Well, as of right now, Mom has been calm all day. The last three nights, there has not been any dramatic over night episodes.. it appears that she is very comfortable with the hospital bed with the special gel mattress. She has been sleeping a lot during the days, too.
Dad and I both got some respite with the arrival of my brother and my S.I.L. on Saturday at noon. He was able to attend a memorial service in the afternoon, and I was able to take my weekly walk with my neighbor as well as have extra time to prepare for my gig that night. They left Sunday morning, and I stayed with Mom until Dad got home from church, around one forty-five, and then I went home for a couple of hours.
A little after four, my S.O. and I walked over with a basket of dinner fixings, and by five we four were seated at the festively decorated dinning room table and indulged in an Easter Sunday dinner of lamb, mashed potatoes and asparagus, with a little salad. Mom ate fairly well, really enjoyed the lamb (always has been one of her favorites), then began to get antsy as we finished our plates. We managed to convince her to stay with the mention of dessert (a simple lemon cake with fresh strawberries slices), which I quickly served to her and kept her at the table for another five minutes or so. After that, I settled her back onto the couch, and, with Dad dozing off in the chair and the television quietly on, I cleaned up the dishes and the kitchen and left by six.
This morning Nurse Corrin arrived at nine, and she examined Mom right in the bed. Though her vitals were all good, Dad expressed concern about how much Mom is sleeping, and Corrin reminded us that this is part of the progression of the disease. She explained that right now, she is sleeping a lot, only perking up a little at some parts of the day (the afternoons, in our case), but that she may snap out of this phase and begin to be awake more again, too. Of course, there is no telling how things will shift, but I mentioned to Dad later that at least it's not as exhausting on us at the moment. It is much easier with her sleeping a lot, and if it doesn't effect her night time sleeping, which it hasn't in the last three nights, let's not stress about it.
I left today at around two in the afternoon, after having sat with Mom while Dad did some errands down town. In that time, I read two more chapters from "Little Women" to her, got her properly dressed, gave her some more Ensure, and did a load of laundry. When Dad came home, she got up and had a little tiny bit of soup, then it was back to the couch. I cleaned up the dishes and came home.
Just a few minutes ago, Dad called me to say that Mom wanted to go out for a little drive in the car. I just saw them go by.... I had a little flash back to all the times in the past when they were always busy, running off to engagements and parties and dinners and concerts, leaving me free not to worry.
Well, just now, I heard the car beep. They've been "on the road" for about twenty minutes, now they are back home. I guess I'll head back over now and see how bumpy the road towards "crazy hour" is today.
Showing posts with label reading. Show all posts
Showing posts with label reading. Show all posts
Monday, April 25, 2011
Wednesday, April 20, 2011
Harmonious Long Day
Mom was not perkier yesterday, at least not until later in the afternoon/early evening.. Then, I wouldn't call it "perky!" She rested on the couch all morning as we switched the beds around. It went very well and smooth, and after the guys left, I spent the rest of the day finishing up the details. Mom was cool about the whole thing, and seemed to like the more opened-up feel to their bedroom. Dad has ordered the hospital bed and it will arrive here on Thursday.
We had a visit from a home health aid, Linda, at around twelve-thirty or so. I told her about what had been going on all morning, and that it was best to just let Mom rest. She was fine with that, and she assisted me move a few books upstairs. She suggested that we order a bed side table to go with the hospital bed. She thought Mom looked pretty colorless that day.
After I went home for an hour for some lunch, I went back around two, and sat with Mom while Dad went out for a walk. I read a chapter or two from "Little Women." Once in a while, she still corrects me when I pronounce a word wrong. Despite how she looks like she is fast asleep, I know she is listening.
Later, after Dad came back and they had taken their four-o'clock pills, I had a chance to finish up the details in the basement from the move. I re-arranged some of the things brought down from their bedroom, both in the guest room down there and in the area of the basement where Mom had her drawing table. On her table and in the drawers are dusty pens and unused paper, old landscape plans rolled up and forgotten, photos of dirt, bushes and plots of lands to be landscaped. I just finishing up when I heard Dad and Mom at the top of the stairs. She wanted to come down, but Dad thought she seemed a little frightened at the top of the steps, she hesitated. Left me just enough time to come up with a basket of old photos, and avoid having her go down the steps.
The basket of photos were mostly a huge collection she took during the time the house they live in was being built. From the foundation, to the framing out, to the detailing, to the painting, to the first few days with minimal furniture.. We showed her one or two, she said she didn't remember. I showed her a photo of her on a landscaping job back in 1993. She said she didn't remember. Then she got a little upset, so we stopped.
At one point she became agitated. I settled her into the couch. After two minutes, she became upset again. She didn't know why. I offered to get her up. "yes!" She hummed the word "home" over and over again. I joined her, quietly, as we walked, then at times I harmonized with her. Then she moved her hum to match my note, then we went up another note together. Then back down again. Then I'd harmonize with her again. And then, just like that, she stops and says something "perfectly normal."
Back to the couch again. At five-thirty, I kissed her good night. Dad was starting dinner. I wished them good luck and hoped they would be comfortable in their new sleeping arrangements, all was calm. At home, I started a small campfire, an activity I've found to be very relaxing. Burning wood from the fallen branches in the woods. Back inside, I was working on some video transfers. Dinner would be ready in ten minutes. The phone rings, it's next door.
Dad hands the phone over to Mom. Mom wants me to come over. Be right there! She was still in bed, Dad trying to console her. She was crying and "toning" and her knees and arms were sticking up. "Do you want to get up? Put on your bathrobe, go in the living room?" "Yes."
So, we did that, and she calmed down. And I left about twenty minutes later, Dad cradling Mom on the couch. I could only hope for the best. It was a long, tiring day, and I was in bed earlier than usual.
It's raining today, and it's bath day.
We had a visit from a home health aid, Linda, at around twelve-thirty or so. I told her about what had been going on all morning, and that it was best to just let Mom rest. She was fine with that, and she assisted me move a few books upstairs. She suggested that we order a bed side table to go with the hospital bed. She thought Mom looked pretty colorless that day.
After I went home for an hour for some lunch, I went back around two, and sat with Mom while Dad went out for a walk. I read a chapter or two from "Little Women." Once in a while, she still corrects me when I pronounce a word wrong. Despite how she looks like she is fast asleep, I know she is listening.
Later, after Dad came back and they had taken their four-o'clock pills, I had a chance to finish up the details in the basement from the move. I re-arranged some of the things brought down from their bedroom, both in the guest room down there and in the area of the basement where Mom had her drawing table. On her table and in the drawers are dusty pens and unused paper, old landscape plans rolled up and forgotten, photos of dirt, bushes and plots of lands to be landscaped. I just finishing up when I heard Dad and Mom at the top of the stairs. She wanted to come down, but Dad thought she seemed a little frightened at the top of the steps, she hesitated. Left me just enough time to come up with a basket of old photos, and avoid having her go down the steps.
The basket of photos were mostly a huge collection she took during the time the house they live in was being built. From the foundation, to the framing out, to the detailing, to the painting, to the first few days with minimal furniture.. We showed her one or two, she said she didn't remember. I showed her a photo of her on a landscaping job back in 1993. She said she didn't remember. Then she got a little upset, so we stopped.
At one point she became agitated. I settled her into the couch. After two minutes, she became upset again. She didn't know why. I offered to get her up. "yes!" She hummed the word "home" over and over again. I joined her, quietly, as we walked, then at times I harmonized with her. Then she moved her hum to match my note, then we went up another note together. Then back down again. Then I'd harmonize with her again. And then, just like that, she stops and says something "perfectly normal."
Back to the couch again. At five-thirty, I kissed her good night. Dad was starting dinner. I wished them good luck and hoped they would be comfortable in their new sleeping arrangements, all was calm. At home, I started a small campfire, an activity I've found to be very relaxing. Burning wood from the fallen branches in the woods. Back inside, I was working on some video transfers. Dinner would be ready in ten minutes. The phone rings, it's next door.
Dad hands the phone over to Mom. Mom wants me to come over. Be right there! She was still in bed, Dad trying to console her. She was crying and "toning" and her knees and arms were sticking up. "Do you want to get up? Put on your bathrobe, go in the living room?" "Yes."
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| April 19, 2011 |
So, we did that, and she calmed down. And I left about twenty minutes later, Dad cradling Mom on the couch. I could only hope for the best. It was a long, tiring day, and I was in bed earlier than usual.
It's raining today, and it's bath day.
Thursday, April 14, 2011
Bittersweet Acceptance
Yesterday, the evaluating nurse from the long-term hospice section of the agency that has been working with us came at ten-thirty in the morning. Dad and I were able to speak with her for about thirty minutes while Maria kept Mom occupied with her weekly bathing ritual, then Mom came out and the new nurse, Corinne, met Mom and checked her vitals and asked her questions. Eventually, Mom got agitated, so I walked her around a bit, then offered to help her into her bed. After a few minutes, Mom moaned again, so I helped her up and back into the living room. She really hates it when we talk about her, around her, but we had no choice. Corinne kept it short though, and promising to call later, she left within the hour.
I read to Mom for another half an hour or so while Dad ran down to the post office. Then, I split and went down town to the local monthly care-givers support group. Their were only three other participants in this meeting, as well as a different facilitator than the last two times I've been present. There was much discussion about coping, frustrations, support, nursing homes, dying. I found it helpful, only in that the other people there could relate, even the facilitator, who had lost her father the Alzheimer's last year.
I raced home after the meeting, unwound for awhile, then went back next door at five. Dad was leaving at five forty-five for his monthly board meeting at the church, and I was concerned that Mom was taxing him. Well, when I arrived, they were sitting at the dining room table, eating dinner of lobster and shrimp stuffed ravioli. Mom seemed relatively calm to me... Dad informed me that he got the call and that we had been accepted into the hospice service. I believe it was based mostly on the fact that Mom has lost more than ten percent of her body weight within the last six months, plus, well, she has Alzheimer's and they all know it doesn't get better.
Dad was told by Corinne that Doctor N. approved of us doubling the dose of the anti-psychotic drug, Haldol, up to 1 mg. a day from .5 mg. a day. Dad did give her a second dose that afternoon, and she did seem a little less nutty, though still very confused. After he left, I quickly washed up the dishes and Mom settled into the couch for awhile, but she still seemed agitated, so I finished working, turned off the television, and got down to reading aloud to her.
This always seems to soothe her, and soon she was snoring away. After another trip to the bathroom and a little walking about, we settled back into the couch, and I read some more until Debra showed up a little after seven. She had offered to come and stay over night so that Dad could sleep in another bed in the house. A SAINT!
Also, she will be on the team of nurses with our new group of providers. She and our lead nurse, Corinne, discussed the "conflict of interest" (she's a friend of Mom and Dad's), and they agreed that it was okay with them if it was okay with us. Of course, I said, no problem!
We will be offered some equipment, some of the meds will be paid for, and we should receive even more home health help, almost daily, I believe. We were told to buy some stool softener for Mom to assist in her eliminations. I'd like to get a "baby gate" for the basement stairs assembled as soon as possible. Dad told me last night that he took a shower at three in the afternoon, told her where he was, and she was settled on the couch. When he came down, Mom was in their bed, all by herself. Later, he found a blanket down on the bed in the basement, meaning she walked down and up there by herself while he was showering! Can't risk her falling.
So, that's where we stand today. Bittersweet.
I read to Mom for another half an hour or so while Dad ran down to the post office. Then, I split and went down town to the local monthly care-givers support group. Their were only three other participants in this meeting, as well as a different facilitator than the last two times I've been present. There was much discussion about coping, frustrations, support, nursing homes, dying. I found it helpful, only in that the other people there could relate, even the facilitator, who had lost her father the Alzheimer's last year.
I raced home after the meeting, unwound for awhile, then went back next door at five. Dad was leaving at five forty-five for his monthly board meeting at the church, and I was concerned that Mom was taxing him. Well, when I arrived, they were sitting at the dining room table, eating dinner of lobster and shrimp stuffed ravioli. Mom seemed relatively calm to me... Dad informed me that he got the call and that we had been accepted into the hospice service. I believe it was based mostly on the fact that Mom has lost more than ten percent of her body weight within the last six months, plus, well, she has Alzheimer's and they all know it doesn't get better.
Dad was told by Corinne that Doctor N. approved of us doubling the dose of the anti-psychotic drug, Haldol, up to 1 mg. a day from .5 mg. a day. Dad did give her a second dose that afternoon, and she did seem a little less nutty, though still very confused. After he left, I quickly washed up the dishes and Mom settled into the couch for awhile, but she still seemed agitated, so I finished working, turned off the television, and got down to reading aloud to her.
This always seems to soothe her, and soon she was snoring away. After another trip to the bathroom and a little walking about, we settled back into the couch, and I read some more until Debra showed up a little after seven. She had offered to come and stay over night so that Dad could sleep in another bed in the house. A SAINT!
Also, she will be on the team of nurses with our new group of providers. She and our lead nurse, Corinne, discussed the "conflict of interest" (she's a friend of Mom and Dad's), and they agreed that it was okay with them if it was okay with us. Of course, I said, no problem!
We will be offered some equipment, some of the meds will be paid for, and we should receive even more home health help, almost daily, I believe. We were told to buy some stool softener for Mom to assist in her eliminations. I'd like to get a "baby gate" for the basement stairs assembled as soon as possible. Dad told me last night that he took a shower at three in the afternoon, told her where he was, and she was settled on the couch. When he came down, Mom was in their bed, all by herself. Later, he found a blanket down on the bed in the basement, meaning she walked down and up there by herself while he was showering! Can't risk her falling.
So, that's where we stand today. Bittersweet.
Friday, March 25, 2011
Persistence And Patience
To be a successful care giver to a person with Alzheimer's Disease, a huge challenge is learning how to read what the person is trying to communicate to you. For what the person says and what the person means is not always in line with one and other.
As an example, just a little while ago, I was sitting in the chair reading, while Mom was laying on the couch, "watching" a movie on Turner Classic and Dad was outside taking a walk. All was quite, until I heard Mom moan, and begin to struggle to try and get up.
"Do you want to get up now, Mom?" I asked.
"Yes."
She grimaced, then she said, "My arm hurts!"
I told her we'd ask Dad if it was okay to give her a Tylenol for the pain when he came back from his walk (she likes to have his approval for this, and I figure it's okay to wait), and I helped her out of the couch. I asked her where she wanted to go, and she decided on the other couch. We decided to sit up in the other couch, instead of laying down. The movie was still on, I settled back into the chair to continue reading, and I told her to keep watching the movie.
She moaned. I asked her if she wanted to continue watching the movie, and she said that she did, but she wanted to watch the other movie, too. She continued to ramble, words coming out that made no sense, and as she went on, she began to get frustrated, and started to weep a little.
So, this is where I had to ask more questions, to find out what she really wanted. Do you want to watch the movie? ("Yes.") Are you comfortable? ("Yes.") Does your arm still hurt? ("Not too bad.") Then she tried to communicate some more, and again, the words made no sense. This is when I said to her something like, "I understand you're trying to tell me something, and you are having a hard time expressing what you really mean. Try not to get frustrated, Mom, let's work this out together."
Finally, it dawned on me what she wanted me to do.
"Do you want me to read to you some more?"
"Yes! I want you to read to me!"
Persistence and patience paid off. I turned off the television, and picked up where I had left off earlier in the day in the book "Little Women," by Louisa May Alcott.
Other times, short-term memory works in your favor. At lunch today, I prepared them both little sandwiches with little sides of fruit, chips and cherry tomatoes. They sat to eat, I did the dishes, then joined them at the table. Mom ate fairly well, for her, then she began to push her plate away, fussing. I asked her to finish chewing before she rose, but no, she wouldn't have it, and she began to say something like, "Don't be like THEM! Let me go!" Agitation rose again.
So, "No problem, let's get up" and we helped her rise. While she was still gaining her balance, I asked her if she'd like to wash down her mouthful of food with her drink. "Yes." She drank. Still standing, I offered her a grape. She ate it. Then a chip. Then she wanted to sit, only at her chair. I helped her to her chair, then brought the plate of food over. I was able to feed her a few more bites of everything with her sitting in her chair. Persistence and patience paid off again.
I noticed Brian, the physical therapist, used the same techniques with her today during his visit. He worked her through a "vigorous" routine, and at times she'd complain, saying she couldn't do it, wanted to stop. Then he'd persist, "Just one more." "You can do, you're stronger than you think." "Great job!" And she'd finish the exercise. Persistence and patience.
Sometimes, you just have to let the person stumble out the words, even if they make no sense, and try and feel the emotion behind the words. If you have any sense of intuition in you at all, you'll get the notion of what the person is trying to say. It could almost be likened to trying to communicate with a person who speaks another language. You listen to the emotion, you read the facial expressions, the hand gestures, read the tone of voice. You apply that to the situation that you are in at that moment. You search and reach and try to find the true meaning behind the words. This requires persistence and patience.
In the end, though, when you do realize what the person is trying to communicate, there is such a great sense of relief and accomplishment. And nothing feels better than letting the person know that you can understand what the person is trying to tell you. The stress is momentarily relieved, and the person suffering with this horrible disease does not feel so misunderstood. For that one moment, the person can feel normal again. That feeling is such a gift for both of you.
As an example, just a little while ago, I was sitting in the chair reading, while Mom was laying on the couch, "watching" a movie on Turner Classic and Dad was outside taking a walk. All was quite, until I heard Mom moan, and begin to struggle to try and get up.
"Do you want to get up now, Mom?" I asked.
"Yes."
She grimaced, then she said, "My arm hurts!"
I told her we'd ask Dad if it was okay to give her a Tylenol for the pain when he came back from his walk (she likes to have his approval for this, and I figure it's okay to wait), and I helped her out of the couch. I asked her where she wanted to go, and she decided on the other couch. We decided to sit up in the other couch, instead of laying down. The movie was still on, I settled back into the chair to continue reading, and I told her to keep watching the movie.
She moaned. I asked her if she wanted to continue watching the movie, and she said that she did, but she wanted to watch the other movie, too. She continued to ramble, words coming out that made no sense, and as she went on, she began to get frustrated, and started to weep a little.
So, this is where I had to ask more questions, to find out what she really wanted. Do you want to watch the movie? ("Yes.") Are you comfortable? ("Yes.") Does your arm still hurt? ("Not too bad.") Then she tried to communicate some more, and again, the words made no sense. This is when I said to her something like, "I understand you're trying to tell me something, and you are having a hard time expressing what you really mean. Try not to get frustrated, Mom, let's work this out together."
Finally, it dawned on me what she wanted me to do.
"Do you want me to read to you some more?"
"Yes! I want you to read to me!"
Persistence and patience paid off. I turned off the television, and picked up where I had left off earlier in the day in the book "Little Women," by Louisa May Alcott.
Other times, short-term memory works in your favor. At lunch today, I prepared them both little sandwiches with little sides of fruit, chips and cherry tomatoes. They sat to eat, I did the dishes, then joined them at the table. Mom ate fairly well, for her, then she began to push her plate away, fussing. I asked her to finish chewing before she rose, but no, she wouldn't have it, and she began to say something like, "Don't be like THEM! Let me go!" Agitation rose again.
So, "No problem, let's get up" and we helped her rise. While she was still gaining her balance, I asked her if she'd like to wash down her mouthful of food with her drink. "Yes." She drank. Still standing, I offered her a grape. She ate it. Then a chip. Then she wanted to sit, only at her chair. I helped her to her chair, then brought the plate of food over. I was able to feed her a few more bites of everything with her sitting in her chair. Persistence and patience paid off again.
I noticed Brian, the physical therapist, used the same techniques with her today during his visit. He worked her through a "vigorous" routine, and at times she'd complain, saying she couldn't do it, wanted to stop. Then he'd persist, "Just one more." "You can do, you're stronger than you think." "Great job!" And she'd finish the exercise. Persistence and patience.
Sometimes, you just have to let the person stumble out the words, even if they make no sense, and try and feel the emotion behind the words. If you have any sense of intuition in you at all, you'll get the notion of what the person is trying to say. It could almost be likened to trying to communicate with a person who speaks another language. You listen to the emotion, you read the facial expressions, the hand gestures, read the tone of voice. You apply that to the situation that you are in at that moment. You search and reach and try to find the true meaning behind the words. This requires persistence and patience.
In the end, though, when you do realize what the person is trying to communicate, there is such a great sense of relief and accomplishment. And nothing feels better than letting the person know that you can understand what the person is trying to tell you. The stress is momentarily relieved, and the person suffering with this horrible disease does not feel so misunderstood. For that one moment, the person can feel normal again. That feeling is such a gift for both of you.
Friday, March 18, 2011
Better Today
Mom was better today.. Turns out, Dad informed me this morning, that she ended up sleeping on one of the couches in the living room all night. She called for him at six-thirty in the morning, and he helped her into their bed then, where she slept some more until about nine-thirty, I think.
When I got there, she was dozing in her chair, having just had her juice, pills, Ensure, and a banana half, and later, I helped her eat an entire hard boiled egg and drink a glass of orange juice. We were expecting visitors today, but everyone showed up later than expected and our nurse M. ended up rescheduling for Monday. I took off the bandage on her ankle with the pressure wound and let it air for a few hours, then when the P.T. Brian arrived, I applied a simple band aid, her socks and sneakers, and we three went outside for three loops up and down the driveway in the windy but warm late winter air. Then we sat her down on one of the chairs on the front porch in the sunshine, and Brian had her do some leg exercises. After a good half an hour in the sunshine, we went back in, and he had Mom show him how she used the bed bar. Then he let her rest, promising to call next week.
After another forty-five minutes -and by this time, Mom and Dad had already eaten their "dinner" lunch of salmon, rice and green beans - the home health aid Linda showed up and gave Mom a light sponge bath, moisturizer and a fresh shirt. It was a short visit as Mom was tired from her "work out," and we let her settle back down, up right, on the couch with her feet up. Dad had retired to the basement for awhile, and I read aloud from the Cuban travels book.
Four o'clock came, and Dad took his pills and we gave Mom her Haloperidol pill. She was less confused today, and even asked us if it was just the one pill she was to swallow. One more bathroom break later, I settled her back up right onto the couch and went home.
On my walk back, I saw my brother's car at the top of our driveway. He's up skiing with friends and is staying over night with us. He zipped over to spend some time with Mom, and I think it's good for everyone to have more visitors, as tired as Dad is these days.
When I got there, she was dozing in her chair, having just had her juice, pills, Ensure, and a banana half, and later, I helped her eat an entire hard boiled egg and drink a glass of orange juice. We were expecting visitors today, but everyone showed up later than expected and our nurse M. ended up rescheduling for Monday. I took off the bandage on her ankle with the pressure wound and let it air for a few hours, then when the P.T. Brian arrived, I applied a simple band aid, her socks and sneakers, and we three went outside for three loops up and down the driveway in the windy but warm late winter air. Then we sat her down on one of the chairs on the front porch in the sunshine, and Brian had her do some leg exercises. After a good half an hour in the sunshine, we went back in, and he had Mom show him how she used the bed bar. Then he let her rest, promising to call next week.
After another forty-five minutes -and by this time, Mom and Dad had already eaten their "dinner" lunch of salmon, rice and green beans - the home health aid Linda showed up and gave Mom a light sponge bath, moisturizer and a fresh shirt. It was a short visit as Mom was tired from her "work out," and we let her settle back down, up right, on the couch with her feet up. Dad had retired to the basement for awhile, and I read aloud from the Cuban travels book.
Four o'clock came, and Dad took his pills and we gave Mom her Haloperidol pill. She was less confused today, and even asked us if it was just the one pill she was to swallow. One more bathroom break later, I settled her back up right onto the couch and went home.
On my walk back, I saw my brother's car at the top of our driveway. He's up skiing with friends and is staying over night with us. He zipped over to spend some time with Mom, and I think it's good for everyone to have more visitors, as tired as Dad is these days.
Thursday, March 17, 2011
Communication And Eating
Yesterday it snowed all day, a warm, big fluffy flaked snow, totaling by the end of the day to nearly four inches. Dad left at ten in the morning, bound for a southeastern town an hour and a half away, check book in pocket. He was off to trade in his 2005 car and come back with a newer (2010) one. This was advise from the lawyer he met with earlier this month - "spend your money on yourself!" No need to twist his arm. Off he went, and knowing this, I allowed myself another forty five minutes at home while Maria was with Mom at the house.
When I arrived, Maria had Mom sitting quietly on the couch, and she was working on Mom's toenails and feet. She is so attentive. Mom's toenails were getting long. I sat with them as Maria changed the bandage on the ankle bone. Then I helped Maria strip the bed sheets on their bed and put fresh sheets on. Maria also quickly cleaned out the bath tub. She always stays later than we pay her for and does extra things. Her standards are high for such an under payed, under appreciated job!
After she left, all Mom was interested in was to lay on the couch with her eyes closed. I settled her in and let her do that as I put in a load of laundry and tidied up around the house a little. Dad called a few times through out the day to let us know where he was at in his process. When he'd call, I speak with him first, and then I'd pass the phone over to Mom, and she'd speak with him in her disjointed, overly loud speaking voice, sometimes stumbling over her words. Damn disease, taking away a person's ability to communicate.
Around one in the afternoon, I sat her down at the dining room table for a plate of brown rice and chicken, with a few heated up carrots on the side. She ate a few bites but quickly lost interest. She does love her cranberry juice though, which she has taken to calling the brown stuff. When she wants to stop, her breathing picks up and her eyes begin to wander. She starts to push the plate away from her and tries to get herself up out of the chair. She usually hasn't even finished chewing the last bite of food she had in her mouth while this is going on. I ask her to finish chewing and to swallow, then I put another bite of food on her fork and encourage her to take one more bite. Sometimes she accepts the food, but when she's done, she is done. She reels her head back and yells out, "I don't want anymore!" So, I drop it.
The rest of the afternoon, she rested on the couch. Towards the last hour or so before Dad got home around four, I read from the Cuba travel essay book. When Dad came home, we got up and went to look at the new car parked in the garage. We said that maybe tomorrow she could go for a ride in the car.
Mom is more confused, some moments are worse then others. Yesterday, when Dad got home, he took his pills at four o'clock, and we gave Mom her Haloperidol pill, too, after a two day break from it. We've started trying to keep better notes in the notebook.
I've bought some corn beef and cabbage and we plan on cooking that up today. The plan is to share that with Mom and Dad, either at our house or at theirs. We'll see how she's doing today. Dad has another appointment this morning, but hopefully, it won't be too long.
When I arrived, Maria had Mom sitting quietly on the couch, and she was working on Mom's toenails and feet. She is so attentive. Mom's toenails were getting long. I sat with them as Maria changed the bandage on the ankle bone. Then I helped Maria strip the bed sheets on their bed and put fresh sheets on. Maria also quickly cleaned out the bath tub. She always stays later than we pay her for and does extra things. Her standards are high for such an under payed, under appreciated job!
After she left, all Mom was interested in was to lay on the couch with her eyes closed. I settled her in and let her do that as I put in a load of laundry and tidied up around the house a little. Dad called a few times through out the day to let us know where he was at in his process. When he'd call, I speak with him first, and then I'd pass the phone over to Mom, and she'd speak with him in her disjointed, overly loud speaking voice, sometimes stumbling over her words. Damn disease, taking away a person's ability to communicate.
Around one in the afternoon, I sat her down at the dining room table for a plate of brown rice and chicken, with a few heated up carrots on the side. She ate a few bites but quickly lost interest. She does love her cranberry juice though, which she has taken to calling the brown stuff. When she wants to stop, her breathing picks up and her eyes begin to wander. She starts to push the plate away from her and tries to get herself up out of the chair. She usually hasn't even finished chewing the last bite of food she had in her mouth while this is going on. I ask her to finish chewing and to swallow, then I put another bite of food on her fork and encourage her to take one more bite. Sometimes she accepts the food, but when she's done, she is done. She reels her head back and yells out, "I don't want anymore!" So, I drop it.
The rest of the afternoon, she rested on the couch. Towards the last hour or so before Dad got home around four, I read from the Cuba travel essay book. When Dad came home, we got up and went to look at the new car parked in the garage. We said that maybe tomorrow she could go for a ride in the car.
Mom is more confused, some moments are worse then others. Yesterday, when Dad got home, he took his pills at four o'clock, and we gave Mom her Haloperidol pill, too, after a two day break from it. We've started trying to keep better notes in the notebook.
I've bought some corn beef and cabbage and we plan on cooking that up today. The plan is to share that with Mom and Dad, either at our house or at theirs. We'll see how she's doing today. Dad has another appointment this morning, but hopefully, it won't be too long.
Wednesday, March 16, 2011
Tuesday
Yesterday I arrived about nine-thirty in the morning. Dad went off to get some stuff done, and I had a calm morning with Mom. She stayed in her chair most of the time, dozing off and on. We watched a movie and then I did some more reading aloud from the travel essays of Cuba. I made her an egg salad sandwich and she ate three or four bites, plus a few Sun Chips and a couple of carrot bites. Then I fed her a medium sized bowl of butter crunch flavored ice cream. I managed to talk her into going outside on the side porch for five minutes to sit in the early spring sunshine. Dad got home around two in the afternoon, and I took the rest of the day "off."
She's had two days off from the Haloperidol, and last night Dad called me after their dinner to say that he noticed Mom was getting antsy that afternoon, so we will start her back up on it this afternoon, probably at four, when he takes his pills.
Dad I discussed a few more things regarding the future. Not easy stuff to talk about.
She's had two days off from the Haloperidol, and last night Dad called me after their dinner to say that he noticed Mom was getting antsy that afternoon, so we will start her back up on it this afternoon, probably at four, when he takes his pills.
Dad I discussed a few more things regarding the future. Not easy stuff to talk about.
Friday, March 4, 2011
How Lucky We Are
I got over there close to eleven in the morning today, and Mom greeted me loudly from her chair. "Hi Kate!"
She had eaten a little for breakfast, and we had a big day planned. Three visits from the hospice agency.
I started to read an article to her from an older issue of the New Yorker about the writer George Elliot, and towards the end, we received our first visit from our primary case worker, Nurse M. around twelve fifteen, shortly after Mom ate a few bites of toast with bacon slices on it that Dad had prepared for her. Nurse M. checked her ankle. Both issues were looking better (a rash on the front part of her leg just above the ankle bone, and a bed sore on her ankle bone.) She checked her vitals (BP good, pulse good) and checked her temperature (normal.) She asked a few questions, while Mom wandered from couch to chair to walking about, and then she left, saying she'd call on Monday morning to set up another visit for that day. She also called Mom's primary doctor, Dr. N., to inquire about when it would be okay to start up on the Haloperidol drug. The doctor's assistant did call back later in the afternoon to say that the doctor thought it would be okay to start her up on that Saturday at two in the afternoon.
We had about half an hour or more before our next visit. I settled Mom down again on the couch, and I finished up the George Elliot article, and soon enough, our next professional walked in the door, the physical therapist, Brian, a seasoned, young man with a wonderful and warm bedside manner. He got right down to business with Mom, evaluating her mobility and the space she lives in. Mom became quite animated with Brian, and he was very charming and understanding with her busy bee like urges. When she proclaimed that all she wanted to do was lie in her bed and go to sleep, he told her that that was fine, and followed her to the bedroom and observed how she got in the bed. Then he showed her (and Dad and me) a few exercises, testing her strength in her legs. She did quite well, and seemed to respond favorably to his inquiries. He also recommended we look into purchasing a handle for her side of the bed, which we could purchase on line. It's a rail we can easily add to the bed to aid in her mobility in getting in and out of bed. He was great, and will come back a week from today.
We had another period of respite, where Mom retreated back to the couch and I read aloud to her some more from New Yorker magazines. Finally, our third visitor arrived, a home health aide named Jackie, and she was all business and was ready to give Mom a sponge bath. Mom protested quite a bit, but eventually, she subsided and did quite well. I wasn't one hundred percent thrilled with Jackie, but, she was professional and very nice. Mom, again, was very animated with her and mentioned that she looked familiar to her. Mom got sponge bathed, a new shirt and panties (well, adult diapers), and a little more "get to know each other" conversation, and then Jackie left.
Dad had left to run some errands shortly after Jackie showed up, and after Jackie left, I let Mom settle back into the couch for a well deserved rest. I read aloud a short article from the New Yorker to her, a recount of a man's time spent in a private school in Wales when he was stealing books from the library, and when I finished, I saw that Mom was sleeping, so I just sat there reading alone and let her rest.
Finally, Dad came back with fresh groceries and pills. Mom and I put away the food, Dad took his pills and retrieved wood from the woodpile for tonight's fire in the wood stove, changed his shoes, and then I insisted that he sit with her quietly for awhile on the couch. Then, I was able to leave. I got home a little after four-thirty. A long day for me, and it's not over yet. Phone calls and band business, dinner and visit from my brother, who is coming up tonight out of the kindness and compassion in his heart for his mother. Sister wanted to come up, too, but was too pressured with work obligations, but we'll be just fine. It's probably for the better this weekend anyway. Mom has really been expressing massive confusion the last few days about where she is, where she's from and where she's going. Also, who lives there, where I live, where my siblings live.
Despite all that, she is much more mobile and verbal, and their are small moments of clarity and understanding for her. The only really, really sad part for me today was when at one point, just she and I alone, she asked me, "Am I going to be this way for the rest of my life?"
How could I answer that question? I decided to just go with the truth, counting on her short-term memory to erase my answer. "Sadly, Mom, yes, you will be."
After a long pause, I added, "But that doesn't take away how much we love and care about each other, and how lucky we are to have that."
"Yes," she replied.
She had eaten a little for breakfast, and we had a big day planned. Three visits from the hospice agency.
I started to read an article to her from an older issue of the New Yorker about the writer George Elliot, and towards the end, we received our first visit from our primary case worker, Nurse M. around twelve fifteen, shortly after Mom ate a few bites of toast with bacon slices on it that Dad had prepared for her. Nurse M. checked her ankle. Both issues were looking better (a rash on the front part of her leg just above the ankle bone, and a bed sore on her ankle bone.) She checked her vitals (BP good, pulse good) and checked her temperature (normal.) She asked a few questions, while Mom wandered from couch to chair to walking about, and then she left, saying she'd call on Monday morning to set up another visit for that day. She also called Mom's primary doctor, Dr. N., to inquire about when it would be okay to start up on the Haloperidol drug. The doctor's assistant did call back later in the afternoon to say that the doctor thought it would be okay to start her up on that Saturday at two in the afternoon.
We had about half an hour or more before our next visit. I settled Mom down again on the couch, and I finished up the George Elliot article, and soon enough, our next professional walked in the door, the physical therapist, Brian, a seasoned, young man with a wonderful and warm bedside manner. He got right down to business with Mom, evaluating her mobility and the space she lives in. Mom became quite animated with Brian, and he was very charming and understanding with her busy bee like urges. When she proclaimed that all she wanted to do was lie in her bed and go to sleep, he told her that that was fine, and followed her to the bedroom and observed how she got in the bed. Then he showed her (and Dad and me) a few exercises, testing her strength in her legs. She did quite well, and seemed to respond favorably to his inquiries. He also recommended we look into purchasing a handle for her side of the bed, which we could purchase on line. It's a rail we can easily add to the bed to aid in her mobility in getting in and out of bed. He was great, and will come back a week from today.
We had another period of respite, where Mom retreated back to the couch and I read aloud to her some more from New Yorker magazines. Finally, our third visitor arrived, a home health aide named Jackie, and she was all business and was ready to give Mom a sponge bath. Mom protested quite a bit, but eventually, she subsided and did quite well. I wasn't one hundred percent thrilled with Jackie, but, she was professional and very nice. Mom, again, was very animated with her and mentioned that she looked familiar to her. Mom got sponge bathed, a new shirt and panties (well, adult diapers), and a little more "get to know each other" conversation, and then Jackie left.
Dad had left to run some errands shortly after Jackie showed up, and after Jackie left, I let Mom settle back into the couch for a well deserved rest. I read aloud a short article from the New Yorker to her, a recount of a man's time spent in a private school in Wales when he was stealing books from the library, and when I finished, I saw that Mom was sleeping, so I just sat there reading alone and let her rest.
Finally, Dad came back with fresh groceries and pills. Mom and I put away the food, Dad took his pills and retrieved wood from the woodpile for tonight's fire in the wood stove, changed his shoes, and then I insisted that he sit with her quietly for awhile on the couch. Then, I was able to leave. I got home a little after four-thirty. A long day for me, and it's not over yet. Phone calls and band business, dinner and visit from my brother, who is coming up tonight out of the kindness and compassion in his heart for his mother. Sister wanted to come up, too, but was too pressured with work obligations, but we'll be just fine. It's probably for the better this weekend anyway. Mom has really been expressing massive confusion the last few days about where she is, where she's from and where she's going. Also, who lives there, where I live, where my siblings live.
Despite all that, she is much more mobile and verbal, and their are small moments of clarity and understanding for her. The only really, really sad part for me today was when at one point, just she and I alone, she asked me, "Am I going to be this way for the rest of my life?"
How could I answer that question? I decided to just go with the truth, counting on her short-term memory to erase my answer. "Sadly, Mom, yes, you will be."
After a long pause, I added, "But that doesn't take away how much we love and care about each other, and how lucky we are to have that."
"Yes," she replied.
No Cheese, Yuck
Thursday, March third, I spent as much time as I could with Mom, so that Dad could be freed up to do other stuff. When I greeted them in the morning, Dad was happy to report that he had caught up on some sleep the night before, and that Mom had gotten up and out of bed by herself, got her self to and on the toilet by herself, and only needed a little help afterwards with tucking in.
Mom greeted me with a big hello, she was dressed and sitting in her chair. She asked how I was, what I had been doing. Throughout the day, I noticed two things - the volume of her voice is stronger, more normal, and her walking and balance is stronger, more normal. I encouraged her to walk an extra loop every time we got up for a bathroom break. Anything, just to keep moving. Take a visit to the window, walk through the kitchen to put down a drinking glass.
She had eaten fairly decently in the morning, too. Their was a little plate of tiny apple bits and one cracker with peanut butter, as well as half a glass of Ensure, on the table next to her chair. I settled in, she asked me to read to her. It's been a couple of weeks since I've had that request, so I grabbed an old New Yorker magazine and found a neat short story called "Blue Roses" by Frances Hwang, and she seemed to listen to the whole thing. Dad drove down to his post office box during that period.
At lunch time, Dad made up a can of a "high fiber" chicken vegetable soup, and she reluctantly got up off the couch and sat at the dining room table, not without some protest. To distract her, I put out a plate of one of the bran muffins cut up into tiny pieces on the table, as well as some cranberry juice. When the soup was ready and served, I offered to feed her, and she didn't protest. "Faster," she said at one point, but not because she likes it, because she wants to get it over with. She ate a little more than about a quarter of a cup of the soup, and wanted out.
I ran home for a little while then. About half an hour later, Dad called to say that the auto body car place called and the fender on his vehicle was replaced and ready for pick up. I zipped back over and then he took off in the big, disgusting rental vehicle.
While he was away, I read some more from the current New Yorker magazine. I started the short story, but it was hard to follow, so we dropped it. I read a theater review. I read a short article about an architect and the tower apartment building he erected near the Brooklyn Bridge. I showed her the photo with the piece. She has told me in the past how she dreamed of being an architect, so I thought she'd enjoy that piece, and she said she did. Lastly, I read a longer article about an artist and the bar that she's run for many years in the Lower East Side. Towards the end of that article, Mom began to stir, and then she said, "Okay, that's enough. Don't you want to stop? It's been hours already!" I told her it hadn't been that long, and that I was going to finish the article anyway, so then she agreed to let me finish the rest of the article out loud. At the end, she admitted that she found it interesting.
After that, she uttered two words I hadn't heard come from her lips in quite a while.
"I'm hungry."
Aha! I leapt from the chair, raced to the kitchen.. she had given me some ideas what she might eat, but NO CRACKERS, NO CHEESE, YUCK. So, I took one slice of whole wheat bread and cut it up into nine small pieces, slapped some peanut butter on them, and added four halved green grapes just for good measure. She started eating, she liked. She asked for some of that "brown stuff," which means cranberry or prune juice, and she drank all that up. She even transferred to the chair to eat her snack.
Then Dad came home with his repaired vehicle, and their was a warm reunion, Mom dramatically relieved that he was home and the car was fixed. I stuck around a little longer so that Dad could take care of a little more stuff, and then I let her lay on the bed for a few minutes. She didn't stay long. By the time I left, she was sitting quietly in her chair again, and Dad was working at the dining room table. I never a heard a peep from them the rest of the night.
Mom greeted me with a big hello, she was dressed and sitting in her chair. She asked how I was, what I had been doing. Throughout the day, I noticed two things - the volume of her voice is stronger, more normal, and her walking and balance is stronger, more normal. I encouraged her to walk an extra loop every time we got up for a bathroom break. Anything, just to keep moving. Take a visit to the window, walk through the kitchen to put down a drinking glass.
She had eaten fairly decently in the morning, too. Their was a little plate of tiny apple bits and one cracker with peanut butter, as well as half a glass of Ensure, on the table next to her chair. I settled in, she asked me to read to her. It's been a couple of weeks since I've had that request, so I grabbed an old New Yorker magazine and found a neat short story called "Blue Roses" by Frances Hwang, and she seemed to listen to the whole thing. Dad drove down to his post office box during that period.
At lunch time, Dad made up a can of a "high fiber" chicken vegetable soup, and she reluctantly got up off the couch and sat at the dining room table, not without some protest. To distract her, I put out a plate of one of the bran muffins cut up into tiny pieces on the table, as well as some cranberry juice. When the soup was ready and served, I offered to feed her, and she didn't protest. "Faster," she said at one point, but not because she likes it, because she wants to get it over with. She ate a little more than about a quarter of a cup of the soup, and wanted out.
I ran home for a little while then. About half an hour later, Dad called to say that the auto body car place called and the fender on his vehicle was replaced and ready for pick up. I zipped back over and then he took off in the big, disgusting rental vehicle.
While he was away, I read some more from the current New Yorker magazine. I started the short story, but it was hard to follow, so we dropped it. I read a theater review. I read a short article about an architect and the tower apartment building he erected near the Brooklyn Bridge. I showed her the photo with the piece. She has told me in the past how she dreamed of being an architect, so I thought she'd enjoy that piece, and she said she did. Lastly, I read a longer article about an artist and the bar that she's run for many years in the Lower East Side. Towards the end of that article, Mom began to stir, and then she said, "Okay, that's enough. Don't you want to stop? It's been hours already!" I told her it hadn't been that long, and that I was going to finish the article anyway, so then she agreed to let me finish the rest of the article out loud. At the end, she admitted that she found it interesting.
After that, she uttered two words I hadn't heard come from her lips in quite a while.
"I'm hungry."
Aha! I leapt from the chair, raced to the kitchen.. she had given me some ideas what she might eat, but NO CRACKERS, NO CHEESE, YUCK. So, I took one slice of whole wheat bread and cut it up into nine small pieces, slapped some peanut butter on them, and added four halved green grapes just for good measure. She started eating, she liked. She asked for some of that "brown stuff," which means cranberry or prune juice, and she drank all that up. She even transferred to the chair to eat her snack.
Then Dad came home with his repaired vehicle, and their was a warm reunion, Mom dramatically relieved that he was home and the car was fixed. I stuck around a little longer so that Dad could take care of a little more stuff, and then I let her lay on the bed for a few minutes. She didn't stay long. By the time I left, she was sitting quietly in her chair again, and Dad was working at the dining room table. I never a heard a peep from them the rest of the night.
Saturday, February 19, 2011
Mystery Solved
Arriving at the house about eleven-thirty in the morning on Friday, I could see Mom was still in the same state as the day before. As I entered the living room to greet Mom, Dad came up the stairs and was eager to tell me of his phone conversations with the doctor's office and the pharmacy. After investigation, it was discovered that the pharmacy was at fault for giving the wrong dosage of the Haloperidol. I was correct in remembering the amount was .5 milligrams.
She ingested 5 milligrams. Once on Tuesday afternoon after the doctor's appointment, and once on Wednesday afternoon after the ladies luncheon.
Short of fantasizing about getting restitution from the pharmacy (who were very embarrassed and apologetic, and naturally, will replace the drug at no cost..), the important thing is we were right, this time, about the drug having that effect on Mom. It's been decided that we will wait several days for the strong dosage to get out of her system, then start back up again with the correct dosage. Because we noticed a remarkable difference in her manner on this drug.. Moments of the "old Mom" showed through, although she could hardly stand up and walk on her own.
Relieved to have made that discovery, I helped Dad get Mom settled at the dining room table so they could eat some soup. Mom was very weak, so I spoon fed her a little bit to get her started, then she ate a few spoonfuls on her own. After lunch and a bathroom break, she settled back into her chair, and eventually, Dad ran out to the market.
While Dad was away, I read a short story out of The New Yorker to her ("Axis" by Alice Munro), and she enjoyed that. Then I turned the television on real low, and helped her settle into the couch. She drifted in and out of sleep. I worked on a crossword puzzle.
The phone rang once. Dad had a question about the grocery list. Mom smiled at the misunderstanding. Later, the phone rang a second time. This time it was Dad informing me that he had just had a fender bender, he was okay, but would be a little bit longer filling out the paper work.
Great, I thought. Just what we need, more stress. But, Mom was either asleep during the phone call or too tired to care, because she never asked me what Dad wanted, so I didn't bother telling her. He was able to drive home in the Suburu, with the whole front of the vehicle's bumper jammed in the back seats. When he got back, he was able to call the insurance company. Mom was still in the dark about the car. Good, no need to worry her any more.
So, I left to go shopping myself. My brother and a friend came up to visit and play music. My sister is arriving this afternoon for an over night and to stay with Mom on Sunday while Dad is in church. So, more respite, a little fun, problems getting worked out, mysteries getting solved.
She ingested 5 milligrams. Once on Tuesday afternoon after the doctor's appointment, and once on Wednesday afternoon after the ladies luncheon.
Short of fantasizing about getting restitution from the pharmacy (who were very embarrassed and apologetic, and naturally, will replace the drug at no cost..), the important thing is we were right, this time, about the drug having that effect on Mom. It's been decided that we will wait several days for the strong dosage to get out of her system, then start back up again with the correct dosage. Because we noticed a remarkable difference in her manner on this drug.. Moments of the "old Mom" showed through, although she could hardly stand up and walk on her own.
Relieved to have made that discovery, I helped Dad get Mom settled at the dining room table so they could eat some soup. Mom was very weak, so I spoon fed her a little bit to get her started, then she ate a few spoonfuls on her own. After lunch and a bathroom break, she settled back into her chair, and eventually, Dad ran out to the market.
While Dad was away, I read a short story out of The New Yorker to her ("Axis" by Alice Munro), and she enjoyed that. Then I turned the television on real low, and helped her settle into the couch. She drifted in and out of sleep. I worked on a crossword puzzle.
The phone rang once. Dad had a question about the grocery list. Mom smiled at the misunderstanding. Later, the phone rang a second time. This time it was Dad informing me that he had just had a fender bender, he was okay, but would be a little bit longer filling out the paper work.
Great, I thought. Just what we need, more stress. But, Mom was either asleep during the phone call or too tired to care, because she never asked me what Dad wanted, so I didn't bother telling her. He was able to drive home in the Suburu, with the whole front of the vehicle's bumper jammed in the back seats. When he got back, he was able to call the insurance company. Mom was still in the dark about the car. Good, no need to worry her any more.
So, I left to go shopping myself. My brother and a friend came up to visit and play music. My sister is arriving this afternoon for an over night and to stay with Mom on Sunday while Dad is in church. So, more respite, a little fun, problems getting worked out, mysteries getting solved.
Thursday, February 3, 2011
Exhausting
We've survived the big snow storm.. two days of snow, really. Four inches or so on Tuesday, then the big fourteen inches or so yesterday. I spent some time with Mom yesterday. She spent most of the day on the couch, as usual. Seeing the snow swirling outside of the window made her anxious. Many times she repeated questions. "Is he going out?" "When will he come back?" And I'd have to reply that he wasn't going anywhere, that he is home.
Dad told me today that he broke down and gave Mom one of the prescription mild sedatives last night. He just could not get her to settle down. Then she retired very early, before eight, and though he tries to keep her up a little later, in a way, I'm sure, it's a relief when she goes to bed, because she is so demanding and tiring to be around.
This morning, we awoke early to begin the big snow clean up. Our angel of a neighbor had done the bulk of our driveways last night, which made our work much lighter, though still, there was a lot. We walked over next door, and while I cleared around the porches and walkways, he skimmed off the top of their driveway with the big scoop. Dad had taken off early to get money, pills and food. When I was done, I went inside to wait with Mom for Maria, who was coming today instead of yesterday during the storm. Once she arrived, I said goodbye and went back to my house to do more snow clearing, then I cleaned up myself and gathered up my redeemable bottles and got my grocery list together.
After running my errands, I went back to sit with Mom for a few hours. They were both napping in front of the television when I got there. Poor Dad. He's got to be exhausted.
Mom asked me if I could read to her from our book, so after I moved the washed load of towels and sheets to the dryer, I settled her into her chair and I began to read. Within ten minutes, she asked me to stop.
I resisted, and continued to read a little more. But then she asked me to stop again. So, we got up, walked around a little bit. Then she wanted to lay on the couch. So, I settled her into the couch, and sat quietly in another chair looking at a book. Five minutes later, she called for me.
"I'm here, Mom."
This was when she said something like,
"I just feel like I need to get going."
"Going where, Mom?"
"Home. I need to get home."
Instead of trying to correct her this time, I just said, "Oh, okay."
So, I went to her, she had half risen from the couch, and she said,
"It's getting dark out."
It was two o'clock in the afternoon, and the sun was shining brightly.
Then she laid back down, and I tucked her in again.
"Read to me?"
So, I took up from the book again, speaking as softly as I could. We got through a few pages, when she wanted to get up again. She repeated the comment about feeling like she needed to get home. She began to arise again, so I offered to take her downstairs so we could see what Dad was doing (though I suspected, correctly, that he was trying to nap on the little bed in the basement.) We waddled down the stairs, and she complained about how cold it was down there. Then she wanted to lie down with Dad on the little bed.. so I helped her settle into the bed next to Dad, and threw a blanket over them. I went back upstairs.
Not even eight or ten minutes later, I heard her panting as she came crawling back up the stairs. I suggested maybe she was resting too much, maybe she'd like to walk around a little. We walked around the table, through the kitchen, into the bathroom, through their bedroom, back around the table. All the while, she is lurching, panting, with a distant look in her eyes.
Finally, she wanted back to the couch again, this time switching directions and facing me while I sat in a chair. I picked up the book again and I was able to read uninterrupted for a good thirty-five to forty minutes. She had her eyes closed the whole time, but I knew she was listening. Many times, I have to explain again to her who was who in the story. Finally, I stopped, getting tired, and remembering that I needed to retrieve and fold the laundry out of the dryer. She wanted to help, so I told her to stay there and I would bring it upstairs and we would fold together. Even this is a big, confusing deal to her, but we did it.
Dad came up again. I tried turning on the television again, but then Dad suggested we turn it off. Dad laid down on her couch, I suggested to Mom that she tuck him in, like he's always doing for her. She got a little snippy about that, but she did it. Then she sat in her chair, and Dad and I tried to engage her in a little light conversation. Mom kept bowing her head, keeping her eyes closed.
By the time I left, Mom was back on the couch. I said my goodbyes, and I asked her to "be good."
"I will."
Like that means anything. Sigh. Oh well. At least I can leave, Dad is twenty-four seven. It is exhausting. Tomorrow is another day.
Dad told me today that he broke down and gave Mom one of the prescription mild sedatives last night. He just could not get her to settle down. Then she retired very early, before eight, and though he tries to keep her up a little later, in a way, I'm sure, it's a relief when she goes to bed, because she is so demanding and tiring to be around.
This morning, we awoke early to begin the big snow clean up. Our angel of a neighbor had done the bulk of our driveways last night, which made our work much lighter, though still, there was a lot. We walked over next door, and while I cleared around the porches and walkways, he skimmed off the top of their driveway with the big scoop. Dad had taken off early to get money, pills and food. When I was done, I went inside to wait with Mom for Maria, who was coming today instead of yesterday during the storm. Once she arrived, I said goodbye and went back to my house to do more snow clearing, then I cleaned up myself and gathered up my redeemable bottles and got my grocery list together.
After running my errands, I went back to sit with Mom for a few hours. They were both napping in front of the television when I got there. Poor Dad. He's got to be exhausted.
Mom asked me if I could read to her from our book, so after I moved the washed load of towels and sheets to the dryer, I settled her into her chair and I began to read. Within ten minutes, she asked me to stop.
I resisted, and continued to read a little more. But then she asked me to stop again. So, we got up, walked around a little bit. Then she wanted to lay on the couch. So, I settled her into the couch, and sat quietly in another chair looking at a book. Five minutes later, she called for me.
"I'm here, Mom."
This was when she said something like,
"I just feel like I need to get going."
"Going where, Mom?"
"Home. I need to get home."
Instead of trying to correct her this time, I just said, "Oh, okay."
So, I went to her, she had half risen from the couch, and she said,
"It's getting dark out."
It was two o'clock in the afternoon, and the sun was shining brightly.
Then she laid back down, and I tucked her in again.
"Read to me?"
So, I took up from the book again, speaking as softly as I could. We got through a few pages, when she wanted to get up again. She repeated the comment about feeling like she needed to get home. She began to arise again, so I offered to take her downstairs so we could see what Dad was doing (though I suspected, correctly, that he was trying to nap on the little bed in the basement.) We waddled down the stairs, and she complained about how cold it was down there. Then she wanted to lie down with Dad on the little bed.. so I helped her settle into the bed next to Dad, and threw a blanket over them. I went back upstairs.
Not even eight or ten minutes later, I heard her panting as she came crawling back up the stairs. I suggested maybe she was resting too much, maybe she'd like to walk around a little. We walked around the table, through the kitchen, into the bathroom, through their bedroom, back around the table. All the while, she is lurching, panting, with a distant look in her eyes.
Finally, she wanted back to the couch again, this time switching directions and facing me while I sat in a chair. I picked up the book again and I was able to read uninterrupted for a good thirty-five to forty minutes. She had her eyes closed the whole time, but I knew she was listening. Many times, I have to explain again to her who was who in the story. Finally, I stopped, getting tired, and remembering that I needed to retrieve and fold the laundry out of the dryer. She wanted to help, so I told her to stay there and I would bring it upstairs and we would fold together. Even this is a big, confusing deal to her, but we did it.
Dad came up again. I tried turning on the television again, but then Dad suggested we turn it off. Dad laid down on her couch, I suggested to Mom that she tuck him in, like he's always doing for her. She got a little snippy about that, but she did it. Then she sat in her chair, and Dad and I tried to engage her in a little light conversation. Mom kept bowing her head, keeping her eyes closed.
By the time I left, Mom was back on the couch. I said my goodbyes, and I asked her to "be good."
"I will."
Like that means anything. Sigh. Oh well. At least I can leave, Dad is twenty-four seven. It is exhausting. Tomorrow is another day.
Monday, January 31, 2011
Respite And Gratitude
It's been a fairly quite week with Mom. The cold and snow has kept us all in, with short trips in and out for supplies or events for Dad and me in between our times with Mom.
The re-introduction of the Namenda drug seems to have helped bring her back to a little bit of a more calm state, though she is still panting during movement and sleeping most of the time. I can't wait until warmer weather so we can start getting her back outside for little walks.. I do worry that she's sitting and laying down too much. Her eating is still finicky and light, but at least she eats dinner fairly well, from what I hear from Dad.
One of the biggest gifts Dad and I have gotten the last few days is some respite. Friday night, the twenty-eighth of January, I had a big and important gig to perform in, and Dad wanted to attend the ninth anniversary of the open mic held at the basement of his church. One of the women at the church offered to come over to their house at six o'clock on that night to sit with Mom for a few hours. Mom was not too happy about the thought of it, but from what I was told, once the woman got there, she had a nice time.
Then on Sunday, my younger brother and my sister-in-law, two very very busy people who live almost three hours away, drove all the way up here and arrived at Mom and Dad's on Sunday morning at ten forty-five in the morning! I was practically in tears at their effort! I was able to leave early and have plenty of morning time to get ready for my gig, and Dad was able to linger after church and do some errands in the early afternoon. My brother and his wife left sometime around four in the afternoon.. unbelievable! So wonderful. This is the kind of team work that makes such a big difference in caring for a person with Alzheimer's Disease.
I am about halfway through reading aloud "Sons And Lovers," and though Mom still has to stop me to ask for clarification on characters and events at times, we are plugging through the story and both enjoying the dense, yet beautiful, writing. She still stops to correct me when I pronounce a word wrong.
I continue to have warm, empathetic support from friends. I was introduced to an old friend of a good friend of mine at the big gig the other night, and when I shared with him this life stage I am going through with my parents, his comments were so uplifting and soul soothing. To paraphrase;
"Enjoy these moments. Yes, she will die, so what? That doesn't take away her spirit in you, the memories you have of her. She will never go away in your heart..."
I whole heartedly agree.
Thank you to my family and friends for your help and understanding. It is reassuring and uplifting and it eases so much of the sad emotional burden that could so easily weigh me down. I am quite sure Dad would concur.
The re-introduction of the Namenda drug seems to have helped bring her back to a little bit of a more calm state, though she is still panting during movement and sleeping most of the time. I can't wait until warmer weather so we can start getting her back outside for little walks.. I do worry that she's sitting and laying down too much. Her eating is still finicky and light, but at least she eats dinner fairly well, from what I hear from Dad.
One of the biggest gifts Dad and I have gotten the last few days is some respite. Friday night, the twenty-eighth of January, I had a big and important gig to perform in, and Dad wanted to attend the ninth anniversary of the open mic held at the basement of his church. One of the women at the church offered to come over to their house at six o'clock on that night to sit with Mom for a few hours. Mom was not too happy about the thought of it, but from what I was told, once the woman got there, she had a nice time.
Then on Sunday, my younger brother and my sister-in-law, two very very busy people who live almost three hours away, drove all the way up here and arrived at Mom and Dad's on Sunday morning at ten forty-five in the morning! I was practically in tears at their effort! I was able to leave early and have plenty of morning time to get ready for my gig, and Dad was able to linger after church and do some errands in the early afternoon. My brother and his wife left sometime around four in the afternoon.. unbelievable! So wonderful. This is the kind of team work that makes such a big difference in caring for a person with Alzheimer's Disease.
I am about halfway through reading aloud "Sons And Lovers," and though Mom still has to stop me to ask for clarification on characters and events at times, we are plugging through the story and both enjoying the dense, yet beautiful, writing. She still stops to correct me when I pronounce a word wrong.
I continue to have warm, empathetic support from friends. I was introduced to an old friend of a good friend of mine at the big gig the other night, and when I shared with him this life stage I am going through with my parents, his comments were so uplifting and soul soothing. To paraphrase;
"Enjoy these moments. Yes, she will die, so what? That doesn't take away her spirit in you, the memories you have of her. She will never go away in your heart..."
I whole heartedly agree.
Thank you to my family and friends for your help and understanding. It is reassuring and uplifting and it eases so much of the sad emotional burden that could so easily weigh me down. I am quite sure Dad would concur.
Tuesday, January 25, 2011
Sleep And Sundowning
Mom's been sleeping a lot. During the day, she alternates between her chair or the couch or a bed. Even in the chair, she keeps her eyes closed a lot.
This afternoon I asked her, "Is it easier for you to have your eyes closed, Mom?"
"Yes," she replied, "it helps me concentrate."
I feel so bad for her. She is in misery.
We picked out a new book to read together from their massive library - "Sons And Lovers," by D.H. Larwrence. Talk about a tongue twister! It makes ME tired reading it out loud. The time keeps shifting back and forth, their are so many characters.. But again, the time period is early nineteenth century and this one is set in England. I have never read it before, but she was excited to be reintroduced to the story again.
Sunday was calm. We spent the first part of the morning "watching" a movie (this is where she lies on the couch with her eyes closed, but I think she is listening.) Then I read for about an hour from the new book. Around twelve-thirty, I sprung on her that my partner was going to come over for about a half hour and sit with her so that I could run home and clean up for our afternoon gig. She didn't take that too badly at all, and she even got up and put on a headband. When he came over, he calmly came in and sat on the couch, and I raced home. Dad got home about one-twenty, so my partner was able to come home and we were able to leave at a decent time this week for the one hour trip to our gig. That went well.
This afternoon, I stayed with her for a few hours. Dad ran down town to get provisions and do banking and post office duties. Mom didn't push for me to read to her today. I don't know if it's the intense cold snap we are experiencing up here in Maine, but she was particularly tired today. The whole time I was there, she laid on the couch while a movie called "The Cardinal" was playing on Turner Classic Movies.
After Dad came home, and four o'clock came and went, she seemed to remain calm. When it came time for me to head out for home, I told her that I was going to go. I sat on the bench by the front door to put on my boots, Dad was in the kitchen, and then she rose from her chair and began to walk towards me. I said, "I'm putting on my coat now, Dad's in the kitchen, what are you doing?"
She said, "I'm going to put on my coat."
"Why?" By this time, Dad had come out to the foyer, too.
"Isn't it time for us to go home now?" she said.
Very calmly and quietly, I said, "No Mom, you are home. I am putting on my coat because I'm going home to where I live next door."
"Oh, I don't live here then?"
Dad said, "No sweetheart, you live here and Kate is going home now."
Mom looked sad and said, "Oh, I am so confused. I thought I lived here."
"You do, Mom. And I live next door, and that's why I am putting on my coat. You live here, so you are staying here."
By this time, Dad and I had led her back over to her chair. When she sat down, Mom said to Dad, "Oh, so you and I eat here together alone tonight?"
"Yes."
Dad remarked aloud that it must be the sundowners making her confused. We got her settled again and it passed. I said goodbye and went out the door, and Dad went back to the kitchen to prepare their meal.
This afternoon I asked her, "Is it easier for you to have your eyes closed, Mom?"
"Yes," she replied, "it helps me concentrate."
I feel so bad for her. She is in misery.
We picked out a new book to read together from their massive library - "Sons And Lovers," by D.H. Larwrence. Talk about a tongue twister! It makes ME tired reading it out loud. The time keeps shifting back and forth, their are so many characters.. But again, the time period is early nineteenth century and this one is set in England. I have never read it before, but she was excited to be reintroduced to the story again.
Sunday was calm. We spent the first part of the morning "watching" a movie (this is where she lies on the couch with her eyes closed, but I think she is listening.) Then I read for about an hour from the new book. Around twelve-thirty, I sprung on her that my partner was going to come over for about a half hour and sit with her so that I could run home and clean up for our afternoon gig. She didn't take that too badly at all, and she even got up and put on a headband. When he came over, he calmly came in and sat on the couch, and I raced home. Dad got home about one-twenty, so my partner was able to come home and we were able to leave at a decent time this week for the one hour trip to our gig. That went well.
This afternoon, I stayed with her for a few hours. Dad ran down town to get provisions and do banking and post office duties. Mom didn't push for me to read to her today. I don't know if it's the intense cold snap we are experiencing up here in Maine, but she was particularly tired today. The whole time I was there, she laid on the couch while a movie called "The Cardinal" was playing on Turner Classic Movies.
After Dad came home, and four o'clock came and went, she seemed to remain calm. When it came time for me to head out for home, I told her that I was going to go. I sat on the bench by the front door to put on my boots, Dad was in the kitchen, and then she rose from her chair and began to walk towards me. I said, "I'm putting on my coat now, Dad's in the kitchen, what are you doing?"
She said, "I'm going to put on my coat."
"Why?" By this time, Dad had come out to the foyer, too.
"Isn't it time for us to go home now?" she said.
Very calmly and quietly, I said, "No Mom, you are home. I am putting on my coat because I'm going home to where I live next door."
"Oh, I don't live here then?"
Dad said, "No sweetheart, you live here and Kate is going home now."
Mom looked sad and said, "Oh, I am so confused. I thought I lived here."
"You do, Mom. And I live next door, and that's why I am putting on my coat. You live here, so you are staying here."
By this time, Dad and I had led her back over to her chair. When she sat down, Mom said to Dad, "Oh, so you and I eat here together alone tonight?"
"Yes."
Dad remarked aloud that it must be the sundowners making her confused. We got her settled again and it passed. I said goodbye and went out the door, and Dad went back to the kitchen to prepare their meal.
Wednesday, January 19, 2011
Experiment Over
Monday morning, I stayed with Mom from nine-thirty until around noon, when Dad got back home from the church. For the first hour with her, she was fine with watching a movie while I quietly read and did a crossword. After that, I picked up the "Sister Anna" book, and before we knew it, Dad was back home. He heated up the chicken noodle soup and I left them to their lunch. I went down town to market and picked up supplies for the next couple of days, in anticipation of another snow / freezing rain fall on Tuesday and Wednesday.
Later on Monday afternoon, I went back over and finished up "Sister Anna." I was a little nervous reading the second to last chapter, because oddly enough, the story turned a bit dark. When we talked about that part the next afternoon, she didn't really remember it anyway, so I lucked out. She was just happy that we finished the story.
I had read until four-thirty, which gave Dad time to do stuff on his computer and what ever else. When he came back up to get wood from the wood shed and start the wood stove, Mom began her usual "sundowners;" getting up, pacing about, sitting back down, lying down, getting back up. She complained about a lot of things.. we got her to sit at the chair by the wood stove, and Dad offered to get her her nightly glass of white Riesling with a couple of ice cubes in it to water it down. She slowly agreed to that. Her hand was shaking as she sipped out the glass. She continued to act anxious. It was quite.
Then, I remembered music. With not enough time to quickly figure out how to switch the television's receiver over to the stereo, and find an appropriate music CD to put in the disc player, I suddenly remembered that the electric piano in the living room had demos on it. Hesitantly, I turned it on.
Mom perked up instantly. At first she thought I was playing the piece, some classical piece in the "Grand Piano" mode. It's the longest one, and as the piece went on, she began to hum along, then even sing out loud. The music was working; it soothed her in the face, it took her mind away. Something clicked in her (undamaged?) sub-conscience mind, and she was calmed, at least more than before. I was quite pleased with that.
As the demos kept playing in their different piano modes and sounds, Mom relaxed, finished up her wine and chewed on her ice cubes, and almost "looked like the old Mom" for a little while. Dad was able to start their dinner and I was able to finally go home without feeling too worried. What a life saver.
Tuesday it snowed all day, a good six to ten inches. I ambled over there in the afternoon, and Mom spent the afternoon between the chair and the couch, mostly watching the old movies on television. She didn't complain about too much, and I left before "crazy hour," but she seemed okay enough to do that. Though I know it's not easy on Dad, still. Later that night, when we had a moment to talk on the phone, he thought that she had had a pretty good day.
Today, Maria showed up for Mom's bath. Our neighbor had cleared our driveways out by nine, a huge gift. I went over a little before noon, greeted Mom, who was on the couch watching HGTV shows, and I told her I was going to do some clearing around their doors and walkways. This took me about forty-five minutes, then I went in just as they were sitting down to some Cream of Mushroom soup and crackers. Mom ate a little, then Dad told me (aloud) that he had checked in with Dr. N. and told him that Mom had not changed much. She is still panting during movements and anxiety, and shaking. So, with that, Dr. N. told Dad to put her back on the Namenda starting tonight, back to 10 mgs. two times a day.
Maybe because we were talking about her, or who knows, but Mom got up, not finished with her soup. She "was done." We tried to get her to finish, but she was too frustrated. Then Dad said, "Well, it must be hard with your right hand so weak and shaking. Why don't you let me feed you?" Mom agreed to that, and I said, "Let me Dad, so you can eat," and so that was what I did. And she actually finished most of her soup that way. Another first for me - spoon feeding Mom.
After lunch, she complained of being tired, so I helped her settle back down onto the couch. As she nodded in and out of sleep, the HGTV programs went on for another hour and a half. I sat quietly on the other couch, and Dad went down stairs for a nap.
When he came back upstairs, he got some wood, then joined us in front of the television. He has a habit of commenting out loud to the things he sees on the programs, and his comments upset Mom. She yelled at him and decided to get up and go to the bedroom. We tried to get her to stay, Dad offered to leave the room, but she insisted, so of course, we obliged. I tucked her in with a throw over the covers. Dad came up and we chatted quietly in the kitchen for a few minutes. Next thing you know, she's up, saying "What about Saturday night?" (She had overheard me talking about my concerns with a gig this weekend.)
Arg. So, we explained what we were talking about, and back to the bedroom we went. I tucked her back in again, and explained that I was going home now and Dad was now in the living room.
"What's the living room?" she said.
"That's the room you were just in, the one with the television in it."
"Oh, yea, okay."
So, perhaps getting her back on the Namenda is good.. Dad and I have noticed little lapses in her cognitive reality the last few days as the drug wore down to nothing (well, today was the first morning of zero Namenda, but the experiment is now over and so back we go.) Dr. N. explained that if there was going to be a change, we would have noticed it right away. We have noticed no change in her behaviors, as well as a drop in her ability to think right (on Monday after lunch, Dad had mentioned to me, she asked him "When were they going to get picked up to go home?" They were home.) And then this question about what the living room was..
Hopefully, the reintroduction of the drug will alleviate some of that again. Naturally, we can't expect much.
Later on Monday afternoon, I went back over and finished up "Sister Anna." I was a little nervous reading the second to last chapter, because oddly enough, the story turned a bit dark. When we talked about that part the next afternoon, she didn't really remember it anyway, so I lucked out. She was just happy that we finished the story.
I had read until four-thirty, which gave Dad time to do stuff on his computer and what ever else. When he came back up to get wood from the wood shed and start the wood stove, Mom began her usual "sundowners;" getting up, pacing about, sitting back down, lying down, getting back up. She complained about a lot of things.. we got her to sit at the chair by the wood stove, and Dad offered to get her her nightly glass of white Riesling with a couple of ice cubes in it to water it down. She slowly agreed to that. Her hand was shaking as she sipped out the glass. She continued to act anxious. It was quite.
Then, I remembered music. With not enough time to quickly figure out how to switch the television's receiver over to the stereo, and find an appropriate music CD to put in the disc player, I suddenly remembered that the electric piano in the living room had demos on it. Hesitantly, I turned it on.
Mom perked up instantly. At first she thought I was playing the piece, some classical piece in the "Grand Piano" mode. It's the longest one, and as the piece went on, she began to hum along, then even sing out loud. The music was working; it soothed her in the face, it took her mind away. Something clicked in her (undamaged?) sub-conscience mind, and she was calmed, at least more than before. I was quite pleased with that.
As the demos kept playing in their different piano modes and sounds, Mom relaxed, finished up her wine and chewed on her ice cubes, and almost "looked like the old Mom" for a little while. Dad was able to start their dinner and I was able to finally go home without feeling too worried. What a life saver.
Tuesday it snowed all day, a good six to ten inches. I ambled over there in the afternoon, and Mom spent the afternoon between the chair and the couch, mostly watching the old movies on television. She didn't complain about too much, and I left before "crazy hour," but she seemed okay enough to do that. Though I know it's not easy on Dad, still. Later that night, when we had a moment to talk on the phone, he thought that she had had a pretty good day.
Today, Maria showed up for Mom's bath. Our neighbor had cleared our driveways out by nine, a huge gift. I went over a little before noon, greeted Mom, who was on the couch watching HGTV shows, and I told her I was going to do some clearing around their doors and walkways. This took me about forty-five minutes, then I went in just as they were sitting down to some Cream of Mushroom soup and crackers. Mom ate a little, then Dad told me (aloud) that he had checked in with Dr. N. and told him that Mom had not changed much. She is still panting during movements and anxiety, and shaking. So, with that, Dr. N. told Dad to put her back on the Namenda starting tonight, back to 10 mgs. two times a day.
Maybe because we were talking about her, or who knows, but Mom got up, not finished with her soup. She "was done." We tried to get her to finish, but she was too frustrated. Then Dad said, "Well, it must be hard with your right hand so weak and shaking. Why don't you let me feed you?" Mom agreed to that, and I said, "Let me Dad, so you can eat," and so that was what I did. And she actually finished most of her soup that way. Another first for me - spoon feeding Mom.
After lunch, she complained of being tired, so I helped her settle back down onto the couch. As she nodded in and out of sleep, the HGTV programs went on for another hour and a half. I sat quietly on the other couch, and Dad went down stairs for a nap.
When he came back upstairs, he got some wood, then joined us in front of the television. He has a habit of commenting out loud to the things he sees on the programs, and his comments upset Mom. She yelled at him and decided to get up and go to the bedroom. We tried to get her to stay, Dad offered to leave the room, but she insisted, so of course, we obliged. I tucked her in with a throw over the covers. Dad came up and we chatted quietly in the kitchen for a few minutes. Next thing you know, she's up, saying "What about Saturday night?" (She had overheard me talking about my concerns with a gig this weekend.)
Arg. So, we explained what we were talking about, and back to the bedroom we went. I tucked her back in again, and explained that I was going home now and Dad was now in the living room.
"What's the living room?" she said.
"That's the room you were just in, the one with the television in it."
"Oh, yea, okay."
So, perhaps getting her back on the Namenda is good.. Dad and I have noticed little lapses in her cognitive reality the last few days as the drug wore down to nothing (well, today was the first morning of zero Namenda, but the experiment is now over and so back we go.) Dr. N. explained that if there was going to be a change, we would have noticed it right away. We have noticed no change in her behaviors, as well as a drop in her ability to think right (on Monday after lunch, Dad had mentioned to me, she asked him "When were they going to get picked up to go home?" They were home.) And then this question about what the living room was..
Hopefully, the reintroduction of the drug will alleviate some of that again. Naturally, we can't expect much.
Monday, January 17, 2011
Sucky Sunday
Sunday morning I arrived a little before ten. Mom had been alone for about forty-five minutes, but she seemed okay with sitting in her chair with a TCM black and white comedy on. I said hello and quickly did some light housekeeping.. Watered the two plants, swept up the tiles, took the Christmas centerpiece apart and made a smaller one out of the pine cones, and did the few breakfast dishes. After about half an hour of that, I settled down and continued reading aloud from the "Sister Anna" book.
Towards eleven-thirty, I took a break. Having decided to give up on making a big ordeal out of a lunch for her, I just peeled and cut up an apple and she nibbled on that. She always claims she's not hungry anyway. I had brought over a batch of chicken and vegetable and noodle soup I had made the night before, so I hoped she and Dad could eat that when he got home.
He finally rang at just a little before one, to tell us he was just heading into the next town but had to stop at a couple of places. Since I had stopped reading, Mom started to get anxious. She began expressing her frustration and anger towards Dad... for what, I'm not sure, but something to do with being angry with him for "not coming home when he says he will."
Reasoning with her doesn't help. He said he would be home in half an hour, so I stalled for another fifteen minutes then asked her if she'd be alright if I left. I always have to race to get ready for my afternoon job.. She said she'd be okay, so I put on my coat and was slowly starting to leave when I heard her moan from the couch.
"What is it, Mom?"
"I'm shaking like a leaf."
I stayed. She started crying, moaning in a wail. I tried to soothe her, I asked her to get up, we walked around a little bit. She said "she didn't know what to do." In the kitchen, she started to put away the small amount of breakfast dishes. I helped her by showing her where the things went, speaking softly. She went to her bed, I helped her in. She had a scowl on her face, a look of worry.
She got back up again, retired back to the couch. She did not want the television on. I stood by the sunny door and watched the driveway. I began to get annoyed with Dad myself, thinking why couldn't he plan to just come straight home from church and plan ahead so he doesn't have to stop on the way home? We both have to compromise on Sunday. He's giving up a lot on the social end of church, I'm giving up my Sunday mornings when I can practice, think about my music, help load gear.
Mom got up to use the bathroom again, it was almost one thirty. Finally, he drove in. On my way out, I asked him why he couldn't plan ahead and not stop on the way home? He snapped at me, said we'd have to find somebody else to stay with her. This upset me, feeling accused of not wanting to be there. It's just I have a commitment, too. I've even stayed home from my gig before.
So, I left upset. I left Mom and Dad upset. My afternoon sucked and now I'm going to head over there shortly so he can go do some work at the church.
Towards eleven-thirty, I took a break. Having decided to give up on making a big ordeal out of a lunch for her, I just peeled and cut up an apple and she nibbled on that. She always claims she's not hungry anyway. I had brought over a batch of chicken and vegetable and noodle soup I had made the night before, so I hoped she and Dad could eat that when he got home.
He finally rang at just a little before one, to tell us he was just heading into the next town but had to stop at a couple of places. Since I had stopped reading, Mom started to get anxious. She began expressing her frustration and anger towards Dad... for what, I'm not sure, but something to do with being angry with him for "not coming home when he says he will."
Reasoning with her doesn't help. He said he would be home in half an hour, so I stalled for another fifteen minutes then asked her if she'd be alright if I left. I always have to race to get ready for my afternoon job.. She said she'd be okay, so I put on my coat and was slowly starting to leave when I heard her moan from the couch.
"What is it, Mom?"
"I'm shaking like a leaf."
I stayed. She started crying, moaning in a wail. I tried to soothe her, I asked her to get up, we walked around a little bit. She said "she didn't know what to do." In the kitchen, she started to put away the small amount of breakfast dishes. I helped her by showing her where the things went, speaking softly. She went to her bed, I helped her in. She had a scowl on her face, a look of worry.
She got back up again, retired back to the couch. She did not want the television on. I stood by the sunny door and watched the driveway. I began to get annoyed with Dad myself, thinking why couldn't he plan to just come straight home from church and plan ahead so he doesn't have to stop on the way home? We both have to compromise on Sunday. He's giving up a lot on the social end of church, I'm giving up my Sunday mornings when I can practice, think about my music, help load gear.
Mom got up to use the bathroom again, it was almost one thirty. Finally, he drove in. On my way out, I asked him why he couldn't plan ahead and not stop on the way home? He snapped at me, said we'd have to find somebody else to stay with her. This upset me, feeling accused of not wanting to be there. It's just I have a commitment, too. I've even stayed home from my gig before.
So, I left upset. I left Mom and Dad upset. My afternoon sucked and now I'm going to head over there shortly so he can go do some work at the church.
Saturday, January 15, 2011
Snowstorm And A New Book
The snowstorm we experienced on Dad's birthday (Wednesday the twelfth) put a stop to most of the planned activities for that day. Dad called Maria and told her to stay home that morning, and they rescheduled for the next morning. The Alzheimer's support group was cancelled. Sometime during the middle of the day, we decided that my partner and I would make the chowder and cornbread at our place, and then, somehow, trudge through the snow with all of it and reheat and eat the meal and Mom at Dad's place.
However, later in the day, our wonderful neighbor, who owns all kinds of vehicles equipped for pushing massive amounts of snow around, showed up in our driveway and pushed much of the snow to the side. Then he went down the road and did the same with Mom and Dad's driveway, so, around four in the afternoon, as we were busy putting together the meal, Dad and I went back and forth over the phone, and at last, made the decision to have the meal at our place after all. My partner got in our four wheel drive "tank" and drove through the deep snow and picked them up. They arrived at five.
I poured Mom and Dad a little wine, and we sat around a couple of small plates of nibbles. At one point, Mom said, "Well, what are we waiting for?" I explained that it was Dad's birthday and he wanted to have a few moments to sit and chat.. but by a little after five thirty, we sat down to the meal.
Mom ate fairly well, but as the dinner wore on, she became more and more tired. When she was finished, I helped her to the toilet, and explained to her we just wanted to give Dad his one little pathetic birthday gift I had hastily thrown together, as well as sing "Happy Birthday" and serve some cake.
By six thirty, Mom was really anxious to go, so we all bundled up, I quickly re-shoveled the porch and walkway to the car, and my partner drove them home.
The next morning was sunny and calm, and I walked over with a snow shovel in hand just a few minutes after Maria showed up to give Mom her weekly bath. I didn't bother saying hello, I just started shoveling. First the path to the front door, then the front porch. Next, the path to the side porch and the oil tank, then the sunny porch off of their bedroom, which was piled the highest with snow drifts. Then it was on to a path to the woodshed, the wood stack area, and the screened in back porch, which is the way for Dad to get wood for their wood stove. Finally, I went over and got most of the snow off of the kitchen porch, which was also high with drifted snow.
I said hello to everybody, then went back home to shower and rest. Later I went back over and, in between finishing up two loads of their laundry, I started a new book with Mom, one I found on their bookshelf, called "Sister Anna." It's a historical novel about a young girl in an unmentioned early time period, living in an unnamed Shaker community. It seems to be set in New England, possibly Maine or Massachusetts, and the city of Boston is mentioned quite a bit. It also features Henry David Thoreau, Nathanial Hawthorne and Ralph Waldo Emerson, as fictionalized characters.
Once again, Mom was all too eager to lay on the couch, with her eyes closed, to listen. The next afternoon was the same. I had spent Friday morning doing my own laundry, and a quick run down to market for groceries for my household for two days. Back at Mom and Dad's, I read for another hour or so, and once again, Mom laid on the couch, her eyes closed, half asleep, but still listening. When it was time for me to leave, she did not protest, and even rose, with some difficulty, to say goodbye. It's getting very hard for her to get up off the couch, and now the chairs, too.
Friday night, my younger brother showed up to their place at nine at night (he had called them at six to let them know he was coming.) She was a little anxious, and we got a call from her a little after eight to see if I knew how long he would be. Luckily, I had just hung up with him (that being the first time I knew he was coming), so I was able to explain to her how long he would be. He hung around until about eleven in the morning, then went off to ski with a friend in New Hampshire.
This morning, Saturday, I ran down to the transfer station to unload some trash, then zipped over to my Aunt's weekend farm house to have a little chat with her. Dad had been stressing all week about my Aunt's invitation for Mom and Dad to go down to her condo just outside of the city for two nights and three days. They had done it last year, and they had gone out to a nice dinner and to see a movie or some other kind of entertainment. Well, this year this notion is impossible, but Dad wasn't sure how to convince my Aunt of this. So, I told him I'd go over and give her the lowdown. She had just come back from the store with some ice cream for their dessert tonight (Mom and Dad are having dinner at her place tonight), and so I sat down in her warm, sunny country kitchen and expressed my concerns and the facts. She understood at once. I'm not sure how much she understands about this disease, but I was easily able to convince her that the idea, though a loving gesture, would be unwise and cause way too much stress for all involved. She lives a very busy life herself, for an eighty year old, and she's got enough to worry about, but I did also suggest to her that she was welcome to come over to their place any time and read to her. She seemed dubious, perhaps because of the unpredictable winter weather, but at least I put the notion out there.
So, at two-thirty, after my weekly walk with my neighbor, I went back over and read for another hour. This time, Dad joined us, sitting in his chair with his eyes closed, too. What a rapt audience I had! A little before four, I stopped, and Mom began to become worried about the impending dinner date. We nipped that in the bud by distracting her in little various ways. When I left for home, they were both sitting in front of the television set, with Turner Classic Movies on, an hour to kill before their dinner date.
When I got home, my partner asked me, "So, how is it today?" I only shrugged. He then said, "Grim?" And I replied, "Yes, it's grim." Couldn't have described it better myself.
However, later in the day, our wonderful neighbor, who owns all kinds of vehicles equipped for pushing massive amounts of snow around, showed up in our driveway and pushed much of the snow to the side. Then he went down the road and did the same with Mom and Dad's driveway, so, around four in the afternoon, as we were busy putting together the meal, Dad and I went back and forth over the phone, and at last, made the decision to have the meal at our place after all. My partner got in our four wheel drive "tank" and drove through the deep snow and picked them up. They arrived at five.
I poured Mom and Dad a little wine, and we sat around a couple of small plates of nibbles. At one point, Mom said, "Well, what are we waiting for?" I explained that it was Dad's birthday and he wanted to have a few moments to sit and chat.. but by a little after five thirty, we sat down to the meal.
Mom ate fairly well, but as the dinner wore on, she became more and more tired. When she was finished, I helped her to the toilet, and explained to her we just wanted to give Dad his one little pathetic birthday gift I had hastily thrown together, as well as sing "Happy Birthday" and serve some cake.
 |
| January 12, 2011 |
By six thirty, Mom was really anxious to go, so we all bundled up, I quickly re-shoveled the porch and walkway to the car, and my partner drove them home.
The next morning was sunny and calm, and I walked over with a snow shovel in hand just a few minutes after Maria showed up to give Mom her weekly bath. I didn't bother saying hello, I just started shoveling. First the path to the front door, then the front porch. Next, the path to the side porch and the oil tank, then the sunny porch off of their bedroom, which was piled the highest with snow drifts. Then it was on to a path to the woodshed, the wood stack area, and the screened in back porch, which is the way for Dad to get wood for their wood stove. Finally, I went over and got most of the snow off of the kitchen porch, which was also high with drifted snow.
I said hello to everybody, then went back home to shower and rest. Later I went back over and, in between finishing up two loads of their laundry, I started a new book with Mom, one I found on their bookshelf, called "Sister Anna." It's a historical novel about a young girl in an unmentioned early time period, living in an unnamed Shaker community. It seems to be set in New England, possibly Maine or Massachusetts, and the city of Boston is mentioned quite a bit. It also features Henry David Thoreau, Nathanial Hawthorne and Ralph Waldo Emerson, as fictionalized characters.
Once again, Mom was all too eager to lay on the couch, with her eyes closed, to listen. The next afternoon was the same. I had spent Friday morning doing my own laundry, and a quick run down to market for groceries for my household for two days. Back at Mom and Dad's, I read for another hour or so, and once again, Mom laid on the couch, her eyes closed, half asleep, but still listening. When it was time for me to leave, she did not protest, and even rose, with some difficulty, to say goodbye. It's getting very hard for her to get up off the couch, and now the chairs, too.
Friday night, my younger brother showed up to their place at nine at night (he had called them at six to let them know he was coming.) She was a little anxious, and we got a call from her a little after eight to see if I knew how long he would be. Luckily, I had just hung up with him (that being the first time I knew he was coming), so I was able to explain to her how long he would be. He hung around until about eleven in the morning, then went off to ski with a friend in New Hampshire.
This morning, Saturday, I ran down to the transfer station to unload some trash, then zipped over to my Aunt's weekend farm house to have a little chat with her. Dad had been stressing all week about my Aunt's invitation for Mom and Dad to go down to her condo just outside of the city for two nights and three days. They had done it last year, and they had gone out to a nice dinner and to see a movie or some other kind of entertainment. Well, this year this notion is impossible, but Dad wasn't sure how to convince my Aunt of this. So, I told him I'd go over and give her the lowdown. She had just come back from the store with some ice cream for their dessert tonight (Mom and Dad are having dinner at her place tonight), and so I sat down in her warm, sunny country kitchen and expressed my concerns and the facts. She understood at once. I'm not sure how much she understands about this disease, but I was easily able to convince her that the idea, though a loving gesture, would be unwise and cause way too much stress for all involved. She lives a very busy life herself, for an eighty year old, and she's got enough to worry about, but I did also suggest to her that she was welcome to come over to their place any time and read to her. She seemed dubious, perhaps because of the unpredictable winter weather, but at least I put the notion out there.
So, at two-thirty, after my weekly walk with my neighbor, I went back over and read for another hour. This time, Dad joined us, sitting in his chair with his eyes closed, too. What a rapt audience I had! A little before four, I stopped, and Mom began to become worried about the impending dinner date. We nipped that in the bud by distracting her in little various ways. When I left for home, they were both sitting in front of the television set, with Turner Classic Movies on, an hour to kill before their dinner date.
When I got home, my partner asked me, "So, how is it today?" I only shrugged. He then said, "Grim?" And I replied, "Yes, it's grim." Couldn't have described it better myself.
Tuesday, January 11, 2011
Calm Again, For Now
Okay, so things are a wee bit more stable this evening.
Yesterday, I went over a couple of times.. reading aloud from "The Maine Hamlet" was most of what I did. I left for awhile, then went back in the early afternoon, and back to reading aloud I went. Towards four, after Dad ran some errands, and I started to get ready to leave, the subject of Wednesday came up, and Mom adamantly and shrilly proclaimed she was NOT GOING down to the community center to sit with the volunteer while Dad and I attend the Alzheimer's support group. She got really stressed about it, and so naturally, we said, fine fine, you don't have to go.. but it stuck with her, and she rose in agitation and protested some more. I was about to leave but I finally snapped at her, though still contained (for me), and yelled back at her to stop, get back in her chair, she does not have to go, we are just trying to work it out, we won't do anything she doesn't want.. As Dad walked down the stairs, her id shouted out, to nobody really (though I was right there in her face to hear it), "He's a fucking asshole!"
Ouch.
I settled her down and left for the night. Again, it's the god damn Alzheimer's, and everybody warns you, it ain't pretty. So there you go.
This morning, I walked in the door and she was half asleep watching a black and white noir film on TCM. I said hello, she seemed alright, and I told her I was going to go downstairs and talk with Dad for a minute. Thankfully, she didn't protest.
Dad was on the phone with his minister from the church, and when he hung up, he told me he decided not to go to the board meeting Wednesday night, and that he had the minister's full hearted blessing on that. First of all, it's Dad's birthday. Second, it's going to be snowing. And most important, it takes the edge off of the stresses with Mom.
I was relieved to hear that he made that decision, and all that was left was to decide that if Dad should be able to get down to the support group at one in the afternoon (unless the day's snowfall makes the travel down town unwise), I will stay with Mom. Better he goes than I.
I had discussed with my partner the idea of having a small birthday dinner for Dad either at our house or theirs, and he and I decided we could throw together another seafood chowder, like the one we made for Christmas, as we all loved it so much. Dad loved the idea, and we both thought it would be worth making the effort to have them come over to our place, in order to give them both a change of scenery.
I told Mom our plans, and she actually liked the idea, in a drowsy, half-aware state of enthusiasm. Hooray. A plan.
So, tomorrow morning, Maria comes (hopefully, what with the snowstorm and all) to give Mom her weekly bath, then (in theory), Dad will go to the support group at one in the afternoon, and somehow, we'll pull together a dinner and a dessert for an intimate birthday celebration at our place in the early evening.
I threw together a lunch for them, then left them to eat so I could get downtown and pull together the ingredients for the chowder and a dinner tonight, thinking ahead to possibly being snowed in for a bit and / or losing power. Then, I went back over a little before four, and spent another hour finishing up the book. Mom was fairly calm, only panting a bit when I had to help her settle back in her chair (I've been trying to say to her "shhhhhh" and "it's okay, breath deep" when I hear her pant), and once I start reading, she closes her eyes and listens.
When we finished the book, I put on my coat and Dad was in the kitchen starting to trim up the green beans he was serving for their dinner. Mom wanted to help, but with her right hand nearly useless these days, all she could do was pick up the ends and toss them in the compost bin. As I went out the door and said goodnight, they were both in the kitchen, puttering about. Calm again, for now.
Yesterday, I went over a couple of times.. reading aloud from "The Maine Hamlet" was most of what I did. I left for awhile, then went back in the early afternoon, and back to reading aloud I went. Towards four, after Dad ran some errands, and I started to get ready to leave, the subject of Wednesday came up, and Mom adamantly and shrilly proclaimed she was NOT GOING down to the community center to sit with the volunteer while Dad and I attend the Alzheimer's support group. She got really stressed about it, and so naturally, we said, fine fine, you don't have to go.. but it stuck with her, and she rose in agitation and protested some more. I was about to leave but I finally snapped at her, though still contained (for me), and yelled back at her to stop, get back in her chair, she does not have to go, we are just trying to work it out, we won't do anything she doesn't want.. As Dad walked down the stairs, her id shouted out, to nobody really (though I was right there in her face to hear it), "He's a fucking asshole!"
Ouch.
I settled her down and left for the night. Again, it's the god damn Alzheimer's, and everybody warns you, it ain't pretty. So there you go.
This morning, I walked in the door and she was half asleep watching a black and white noir film on TCM. I said hello, she seemed alright, and I told her I was going to go downstairs and talk with Dad for a minute. Thankfully, she didn't protest.
Dad was on the phone with his minister from the church, and when he hung up, he told me he decided not to go to the board meeting Wednesday night, and that he had the minister's full hearted blessing on that. First of all, it's Dad's birthday. Second, it's going to be snowing. And most important, it takes the edge off of the stresses with Mom.
I was relieved to hear that he made that decision, and all that was left was to decide that if Dad should be able to get down to the support group at one in the afternoon (unless the day's snowfall makes the travel down town unwise), I will stay with Mom. Better he goes than I.
I had discussed with my partner the idea of having a small birthday dinner for Dad either at our house or theirs, and he and I decided we could throw together another seafood chowder, like the one we made for Christmas, as we all loved it so much. Dad loved the idea, and we both thought it would be worth making the effort to have them come over to our place, in order to give them both a change of scenery.
I told Mom our plans, and she actually liked the idea, in a drowsy, half-aware state of enthusiasm. Hooray. A plan.
So, tomorrow morning, Maria comes (hopefully, what with the snowstorm and all) to give Mom her weekly bath, then (in theory), Dad will go to the support group at one in the afternoon, and somehow, we'll pull together a dinner and a dessert for an intimate birthday celebration at our place in the early evening.
I threw together a lunch for them, then left them to eat so I could get downtown and pull together the ingredients for the chowder and a dinner tonight, thinking ahead to possibly being snowed in for a bit and / or losing power. Then, I went back over a little before four, and spent another hour finishing up the book. Mom was fairly calm, only panting a bit when I had to help her settle back in her chair (I've been trying to say to her "shhhhhh" and "it's okay, breath deep" when I hear her pant), and once I start reading, she closes her eyes and listens.
When we finished the book, I put on my coat and Dad was in the kitchen starting to trim up the green beans he was serving for their dinner. Mom wanted to help, but with her right hand nearly useless these days, all she could do was pick up the ends and toss them in the compost bin. As I went out the door and said goodnight, they were both in the kitchen, puttering about. Calm again, for now.
Monday, January 10, 2011
Day To Day
Still not really out of my Mom funky depression, so I haven't had the heart to write here the last few days.
When I started, I was strong, determined, confident. These last few days, I am feeling hopeless and depressed, wishing "it" would just go away and stop dragging me down. Nothing very dramatic has happened, it's just the day to day grind, seeing Mom so beaten down by the disease. I don't know how Dad does it, he's simply amazing.
We haven't noted too much difference with the drop in the Namenda drug yet, but it is still early in the experiment. She's still nervous, shaking and panting, as well as nodding off a lot. All she wants me to do is read aloud to her. So far I've read to her "The Secret Garden," by Frances Hodgson Burnett; "An Afternoon Walk," by Dorothy Eden; "The Vines Of Yarrabee," also by Dorothy Eden; and now she has started a historical book called "A Maine Hamlet," by Lura Beam. All of these books include a lot of descriptions of flowers and landscape, clothing and foods. Two of them were set in the early 1900's, and the latest book is about life in Maine in the 1800's.
I'll read a chapter aloud to her, and then she'll lift her nodded head and open her closed eyes and stare at me, like a doggie asking for another dog treat. It seems to be the only thing she can concentrate on. My voice lulls her into a world that is the next best thing to the escape of sleep.
Yesterday, I mostly read to her. On a break, I managed to convince her to let me trim and file her fingernails, but she was anxious and bratty the whole time. Though "bratty" is really an unfair word, it's just the closest thing I can come up with to describe the behavior that the Alzheimer's brings out in her. It can be hard to separate the acting out; sometimes I think it's Mom - her real personality, being a brat - but then I have to remind myself that it's not her, it's the brain damage.
We may be getting closer to needing more help soon. I am not sure how Dad is feeling - we hardly get a chance to have a decent conversation without Mom listening and getting upset. You'd think that it would be easy for us to talk, but it's not. Either one of us has to be in her presence all of the time. I'm happy he at least gets the chance to still get out to church every week, try to live "normally" for a couple of hours. However, if he's anything like me, I know Mom is lurking in the forefront of his mind at all times....
Suckfest.
Maybe I'll feel better after today. I'm heading over soon. When I'll get a chance to vacuum, I'll never know. Can't do it with her there anymore.
Oh, and Dad's birthday is on Wednesday.. We are going to try and get all three of us down to the one o'clock AD support group in town that day, and then Dad wants to attend his church board meeting that night. Plus, Mom has her bath that morning. THAT should be a fun day.
NOT.
When I started, I was strong, determined, confident. These last few days, I am feeling hopeless and depressed, wishing "it" would just go away and stop dragging me down. Nothing very dramatic has happened, it's just the day to day grind, seeing Mom so beaten down by the disease. I don't know how Dad does it, he's simply amazing.
We haven't noted too much difference with the drop in the Namenda drug yet, but it is still early in the experiment. She's still nervous, shaking and panting, as well as nodding off a lot. All she wants me to do is read aloud to her. So far I've read to her "The Secret Garden," by Frances Hodgson Burnett; "An Afternoon Walk," by Dorothy Eden; "The Vines Of Yarrabee," also by Dorothy Eden; and now she has started a historical book called "A Maine Hamlet," by Lura Beam. All of these books include a lot of descriptions of flowers and landscape, clothing and foods. Two of them were set in the early 1900's, and the latest book is about life in Maine in the 1800's.
I'll read a chapter aloud to her, and then she'll lift her nodded head and open her closed eyes and stare at me, like a doggie asking for another dog treat. It seems to be the only thing she can concentrate on. My voice lulls her into a world that is the next best thing to the escape of sleep.
Yesterday, I mostly read to her. On a break, I managed to convince her to let me trim and file her fingernails, but she was anxious and bratty the whole time. Though "bratty" is really an unfair word, it's just the closest thing I can come up with to describe the behavior that the Alzheimer's brings out in her. It can be hard to separate the acting out; sometimes I think it's Mom - her real personality, being a brat - but then I have to remind myself that it's not her, it's the brain damage.
We may be getting closer to needing more help soon. I am not sure how Dad is feeling - we hardly get a chance to have a decent conversation without Mom listening and getting upset. You'd think that it would be easy for us to talk, but it's not. Either one of us has to be in her presence all of the time. I'm happy he at least gets the chance to still get out to church every week, try to live "normally" for a couple of hours. However, if he's anything like me, I know Mom is lurking in the forefront of his mind at all times....
Suckfest.
Maybe I'll feel better after today. I'm heading over soon. When I'll get a chance to vacuum, I'll never know. Can't do it with her there anymore.
Oh, and Dad's birthday is on Wednesday.. We are going to try and get all three of us down to the one o'clock AD support group in town that day, and then Dad wants to attend his church board meeting that night. Plus, Mom has her bath that morning. THAT should be a fun day.
NOT.
Friday, January 7, 2011
This Whole Thing Sucks
Yesterday, a frigid morning, I got over to stay with Mom a little after ten, so that Dad could go to the church to do some treasury work, get his blood test at the hospital, and do a little shopping on the way back. Mom was sitting with her book, reading away. I had wanted to try and start cleaning up some of the Christmas decor, and I got started on that right away.
The phone rang, and it was one of Dad's dearest former colleagues, who is aware of the situation. I spoke with him for a minute to explain Dad was out, then he asked to speak with Mom. She agreed, and stood with the phone in her shaking hands and spoke with him for about another minute or two. She was shaking like a leaf. I could see this was not a good day for Mom.
Soon, she asked if I would read aloud to her from the book. She was very impatient and seemed only to want to get back to the story. Like it is the only thing her damaged mind could follow. I read to her for awhile, then took a break. She went back to reading herself, trying in vain to read aloud to me a little while I quickly zipped around and tried to do more work.
I made her a simple lunch of organic chicken soup and grapes and a couple of chips and a small glass of Ensure. I had us sit at the dinning room table so that she wouldn't spill the soup on her lap. She complained a lot about this and that, and rushed through eating. She finds no joy in eating anymore. It's distressing. I don't know how Dad stays so composed day after day.
I cleaned up the dishes after lunch and then went back to reading to her aloud. Dad rang to let us know where he was at, and I continued to read aloud until he came home, sometime around two in the afternoon. While he distracted her with the groceries he brought home, I was able to zip upstairs and grab the box for the little porcelain lighted Christmas tree and as quickly as I could, I disassembled it and packed it up, not before she wandered over and moaned a little about the whole thing. Luckily for me, Dad was there to tell her it was alright and diffuse the event.
She is so worried and sad all the time. I kind of dread hanging out with her this morning, while Dad goes off to his annual physical with Dr. N. However, it's my job and if it weren't for me, who else? I can't stop thinking about her misery. Perhaps when this book she is reading is finished, she'll go back to sleeping or watching television.. but even television seems to be too confusing for her. It's way too frigid out to convince her to go outside for a walk. She's only really happy when Dad is in her view.
This sucks. And that's just me. Imagine how much it sucks for her?
The phone rang, and it was one of Dad's dearest former colleagues, who is aware of the situation. I spoke with him for a minute to explain Dad was out, then he asked to speak with Mom. She agreed, and stood with the phone in her shaking hands and spoke with him for about another minute or two. She was shaking like a leaf. I could see this was not a good day for Mom.
Soon, she asked if I would read aloud to her from the book. She was very impatient and seemed only to want to get back to the story. Like it is the only thing her damaged mind could follow. I read to her for awhile, then took a break. She went back to reading herself, trying in vain to read aloud to me a little while I quickly zipped around and tried to do more work.
I made her a simple lunch of organic chicken soup and grapes and a couple of chips and a small glass of Ensure. I had us sit at the dinning room table so that she wouldn't spill the soup on her lap. She complained a lot about this and that, and rushed through eating. She finds no joy in eating anymore. It's distressing. I don't know how Dad stays so composed day after day.
I cleaned up the dishes after lunch and then went back to reading to her aloud. Dad rang to let us know where he was at, and I continued to read aloud until he came home, sometime around two in the afternoon. While he distracted her with the groceries he brought home, I was able to zip upstairs and grab the box for the little porcelain lighted Christmas tree and as quickly as I could, I disassembled it and packed it up, not before she wandered over and moaned a little about the whole thing. Luckily for me, Dad was there to tell her it was alright and diffuse the event.
She is so worried and sad all the time. I kind of dread hanging out with her this morning, while Dad goes off to his annual physical with Dr. N. However, it's my job and if it weren't for me, who else? I can't stop thinking about her misery. Perhaps when this book she is reading is finished, she'll go back to sleeping or watching television.. but even television seems to be too confusing for her. It's way too frigid out to convince her to go outside for a walk. She's only really happy when Dad is in her view.
This sucks. And that's just me. Imagine how much it sucks for her?
Saturday, January 1, 2011
Give Them What They Want
The last day of the old year and the first day of the new year have been very mild for this region, and Dad was able to gather Mom up for a little afternoon walk up to my place on both days. I missed their visit on New Year's Eve, as I was out to market, but I was told all about the positive little visit by my partner when I came home. Even though part of the message was that I wouldn't need to visit them, I couldn't resist going over anyway for a quick pop in, and to wish them a Happy New Year.
I found Mom with the new book we had started the day before. She was actually reading it, though I am not sure how much she was absorbing, at least she was taking a stab at it. When I asked her to fill me in on what had happened in the story since she took up reading it on her own, she basically reviewed to me the first two chapters which I had already read to her.. but, hey, at least she's trying.
Today's afternoon visit I was here for, and we had them come inside for a minute. Mom and Dad were in good spirits on this mild New Year's Day afternoon, and looking forward to their dinner date later at her sister's weekend farm house down the road. I grabbed my camera and walked them back home, taking a few photos along the way. Mom was quite verbal and they both passionately described the classical music program they had watched and listened to last night.
Earlier in the day, I had received an email from Dad with a link to an article published in the New York Times today. It suggests that the best treatment for AD patients is related to empathetic care giving as opposed to drugs (excluding drugs to relieve pain and discomfort.) To give the patient what they want, when they want, in a loving and attentive manner, is the best way to ease their discomfort and confusion. The success one particular nursing home was having was sited as exemplary in the movement towards this manner of approach with the care of AD patients. It's a beautiful thing, and well worth reading.
Reading this article only strengthens my and Dad's resolve to be as patient and giving with Mom's emotions and wants and needs as we can, in order to reduce her anxiety and confusion. I have seen with my own eyes the positive results this approach to care giving can have with my mother. As long as their are still no proven medical "cures"to this brain disease, the best thing to do is to focus on empathetic caregiving.
Seeing my mother "alive" in the eyes and still trying to do things like read, take walks, put away dishes or fold laundry brings me hope... or perhaps that word is too much wishful thinking.. however, it brings me a little peace of mind in this very moment to moment, day to day existence we are experiencing with her in her journey towards the inevitable darkness of Alzheimers Disease.
I found Mom with the new book we had started the day before. She was actually reading it, though I am not sure how much she was absorbing, at least she was taking a stab at it. When I asked her to fill me in on what had happened in the story since she took up reading it on her own, she basically reviewed to me the first two chapters which I had already read to her.. but, hey, at least she's trying.
Today's afternoon visit I was here for, and we had them come inside for a minute. Mom and Dad were in good spirits on this mild New Year's Day afternoon, and looking forward to their dinner date later at her sister's weekend farm house down the road. I grabbed my camera and walked them back home, taking a few photos along the way. Mom was quite verbal and they both passionately described the classical music program they had watched and listened to last night.
 |
| January 1, 2011 |
Earlier in the day, I had received an email from Dad with a link to an article published in the New York Times today. It suggests that the best treatment for AD patients is related to empathetic care giving as opposed to drugs (excluding drugs to relieve pain and discomfort.) To give the patient what they want, when they want, in a loving and attentive manner, is the best way to ease their discomfort and confusion. The success one particular nursing home was having was sited as exemplary in the movement towards this manner of approach with the care of AD patients. It's a beautiful thing, and well worth reading.
Reading this article only strengthens my and Dad's resolve to be as patient and giving with Mom's emotions and wants and needs as we can, in order to reduce her anxiety and confusion. I have seen with my own eyes the positive results this approach to care giving can have with my mother. As long as their are still no proven medical "cures"to this brain disease, the best thing to do is to focus on empathetic caregiving.
Seeing my mother "alive" in the eyes and still trying to do things like read, take walks, put away dishes or fold laundry brings me hope... or perhaps that word is too much wishful thinking.. however, it brings me a little peace of mind in this very moment to moment, day to day existence we are experiencing with her in her journey towards the inevitable darkness of Alzheimers Disease.
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