It's late, I should be going to bed.
She was so agitated, all day, and into the night, too, according to an email I just received from Dad.
I nearly lost my mind with impatience today, and poor Dad did, too. This job as caregiver is so damn frustrating and hard sometimes. I, at least, have relief, I can walk away at some point, come home, try to forget. Dad can not. It's exhausting.
Showing posts with label frustration. Show all posts
Showing posts with label frustration. Show all posts
Thursday, April 28, 2011
Friday, April 22, 2011
Scrambled Emotions
Yesterday was a tough day for all three of us. Mom, she's, I think, pissed that she's dying, or maybe still thinks she can get out of this mess, and all the "extra attention" is getting on her nerves. Dad, struggling himself with this mortality stuff and trying to squeeze the most out of his life, which is really hard to do when you're not getting enough sleep. Me, burning out. All day over there, reading aloud, worrying about her every move, not living my own life, really. In the afternoon, when she starts up, "home, home, home, home..." I lost it, tears streaming down my face, the look of desperation on her face so heartbreaking. I made Dad take her out for a drive around the "block," just to get her out of the house for a few minutes. It seemed to help.
We were expecting the hospital bed yesterday afternoon, and it never came. We had already stored the twin bed upstairs under the eaves, and so by six o'clock, after a phone call or two with the agency, it was clear they were not delivering the bed and so we had to bring the twin mattress, box spring and frames back down the stairs, and make the bed again for Mom. It didn't take too much time or effort, but added up with the whole stress of the day, the situation, it was really aggravating. We should get the bed today.
Mom had a visit from Michelle in the morning, then from our Nurse Corrin at one in the afternoon. We discussed more sleep management action plans, and I think Dad feels even more support in that area. Nurse Corrin stressed how vital it is for Dad to get good sleep, because he is Mom's primary care giver.
This Saturday and Saturday night we should have a bit of respite with my brother and SIL, and Sunday my gig has been cancelled. I'll have my gig on Saturday night.. I think I need to get away for a minute.
Today, we meet with a chaplain provided by the agency.
We were expecting the hospital bed yesterday afternoon, and it never came. We had already stored the twin bed upstairs under the eaves, and so by six o'clock, after a phone call or two with the agency, it was clear they were not delivering the bed and so we had to bring the twin mattress, box spring and frames back down the stairs, and make the bed again for Mom. It didn't take too much time or effort, but added up with the whole stress of the day, the situation, it was really aggravating. We should get the bed today.
Mom had a visit from Michelle in the morning, then from our Nurse Corrin at one in the afternoon. We discussed more sleep management action plans, and I think Dad feels even more support in that area. Nurse Corrin stressed how vital it is for Dad to get good sleep, because he is Mom's primary care giver.
This Saturday and Saturday night we should have a bit of respite with my brother and SIL, and Sunday my gig has been cancelled. I'll have my gig on Saturday night.. I think I need to get away for a minute.
Today, we meet with a chaplain provided by the agency.
Tuesday, April 12, 2011
Sleepless Nights, Confusing Days
Saturday my sister came up for an overnight, and later my brother stopped by after skiing. My sister went with Mom and Dad to my Aunt's house down the road for dinner. Sis reported back to me later that Mom was very difficult the whole time. Mom's "sundowners" was peaking when my sister arrived at four-thirty, and apparently, it continued on through the whole night. Dad got very little sleep that night as Mom rose from bed several times, wandering around the living room.
Dad got to church and I went next door at about eleven-thirty on Sunday morning to see how it was going. Sis was a bit overwhelmed - Mom was still undressed and sleeping on the couch. We got her up and dressed and fed her an egg and juice and Ensure and a little fruit. Eventually, she ended up back on the couch. Hearing of the bad night before, I decided to stay home from my gig that afternoon so that I could assist Dad, knowing he was exhausted. He was grateful for that. I stayed until about six, then went back over from seven until eight-thirty, after we put her to bed. That night, she stayed in bed and Dad got to catch up on a little sleep.
Monday I went over at one in the afternoon, after I did my down town errands. Mom was okay for a while, dozing in her usual spot, and I read to her from "Little Women" as Dad ran off to do his errands. But then around two in the afternoon, she started up again.. restless, wanting to go home, moving from couch to chair to bed, moaning. She settled down a little when Dad got back around three-thirty, but that didn't last too long, even with a short jaunt outside, up and down the driveway a couple of times. At pill time, she was still agitated, but eventually, she settled back down, and I, somewhat reluctantly, left around four-thirty. I did feel guilty, but I kept my fingers crossed that she wouldn't be too much trouble the rest of the night.
Naturally, this morning at eight I received an email from Dad saying that she was, once again, up and down all night. He had a tough time getting her to settle into bed.. and once again, lost a lot of sleep.
I'm about to head over there now at eleven and try and keep her up and moving as much as possible so that maybe she'll be more apt to sleep through out the night tonight. I know I'm feeling like pulling my hair out, so I can only imagine how tired and frustrated Dad is.
Hopefully today or tonight we'll get a call from the evaluating nurse for an appointment on Wednesday to see if she'll qualify for long term hospice help. This would, in theory, I hope, provide more assistance. Wednesday night, their friend Debra (the hospice nurse who works for the agency servicing us now) has committed to an overnight (as a friend, "off the clock," God bless her!) so that Dad can get a full night's rest in another bed. We'll see how that works out!
Dad got to church and I went next door at about eleven-thirty on Sunday morning to see how it was going. Sis was a bit overwhelmed - Mom was still undressed and sleeping on the couch. We got her up and dressed and fed her an egg and juice and Ensure and a little fruit. Eventually, she ended up back on the couch. Hearing of the bad night before, I decided to stay home from my gig that afternoon so that I could assist Dad, knowing he was exhausted. He was grateful for that. I stayed until about six, then went back over from seven until eight-thirty, after we put her to bed. That night, she stayed in bed and Dad got to catch up on a little sleep.
Monday I went over at one in the afternoon, after I did my down town errands. Mom was okay for a while, dozing in her usual spot, and I read to her from "Little Women" as Dad ran off to do his errands. But then around two in the afternoon, she started up again.. restless, wanting to go home, moving from couch to chair to bed, moaning. She settled down a little when Dad got back around three-thirty, but that didn't last too long, even with a short jaunt outside, up and down the driveway a couple of times. At pill time, she was still agitated, but eventually, she settled back down, and I, somewhat reluctantly, left around four-thirty. I did feel guilty, but I kept my fingers crossed that she wouldn't be too much trouble the rest of the night.
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| April 11, 2011 |
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| April 11, 2011 |
Naturally, this morning at eight I received an email from Dad saying that she was, once again, up and down all night. He had a tough time getting her to settle into bed.. and once again, lost a lot of sleep.
I'm about to head over there now at eleven and try and keep her up and moving as much as possible so that maybe she'll be more apt to sleep through out the night tonight. I know I'm feeling like pulling my hair out, so I can only imagine how tired and frustrated Dad is.
Hopefully today or tonight we'll get a call from the evaluating nurse for an appointment on Wednesday to see if she'll qualify for long term hospice help. This would, in theory, I hope, provide more assistance. Wednesday night, their friend Debra (the hospice nurse who works for the agency servicing us now) has committed to an overnight (as a friend, "off the clock," God bless her!) so that Dad can get a full night's rest in another bed. We'll see how that works out!
Friday, April 8, 2011
Home
Yesterday I got over early, and once Mom was "up" and dressed, I told Dad to take off for a while and do what he had to do. I read some to Mom, got her up and outside a couple of times, fed her what foods I could get her to eat, and kept encouraging her to drink the high calorie drinks.
She has been more confused and whiney than ever. This is especially true by the late afternoon. After Dad got home in the mid afternoon, I ran down town to bank and thought I'd stop on the way back and pick up a shrimp cocktail. I had had some success with her eating appetizers the day before - making a big deal about it with her watered down wine, so I thought she'd enjoy some shrimps. And she did! She ate about six of them, plus a couple of crackers with spreadable cheese.
However, her confusion is devastating. Before "cocktail hour," she and I were sitting in front of the tube, and an ad for chocolate came on. This made her want a square of chocolate, so I got up and brought her one. She took a bite of it and said, "Here," and pointed to the television with the half-eaten piece in her hand. I replied, "You mean me? I had a bite, I'm all set, thanks." And she said, "No, for the girl!" "What girl, Mom?" "The girl in the t.v.!"
Well, I told her we couldn't give it to the girl in the t.v. because, well, she was in the t.v., and then I added, plus, she just ate a square, so she was all set, too. "Oh."
At another point, when she began to get fidgety in her chair, I asked her if she wanted.. oh, I don't, something like, me to turn on the television. "No!" she said, "I've got work to do!"
Sometimes, I'll try and distract her by having her "help" me with small tasks. They say this is helpful, and I do find it works, though the limited use of her arm still makes it frustrating for her.
The worst part is her confusion about "home." This concept of home, what does it mean to her? I still think it's a cry out to "get her out of her own head." Home means being normal again. And it hurts to not be able to get her back to that.
She cries out for Dad a lot, too, even if he's not there. I have to remind her that he's either out or downstairs or taking a walk or on the phone or in the bathroom taking a leak (like he just said to her a minute earlier.)
Our patience is tested constantly. Our hearts are heavy with her agony and our minds our cluttered with all of the things we are encouraged to do for Mom's comfort and health. Their are small moments of lightness, when her confusion does make her say something funny, or when she does have a tiny moment of clarity. She still has razor sharp hearing, and she does respond well to gentle touch. Just holding her hand or caressing her head or neck is soothing to her.
But the painful reality is that it is so frustrating to be unable to take away her confusion, discomfort and fear.
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| April 8, 2011 |
She has been more confused and whiney than ever. This is especially true by the late afternoon. After Dad got home in the mid afternoon, I ran down town to bank and thought I'd stop on the way back and pick up a shrimp cocktail. I had had some success with her eating appetizers the day before - making a big deal about it with her watered down wine, so I thought she'd enjoy some shrimps. And she did! She ate about six of them, plus a couple of crackers with spreadable cheese.
However, her confusion is devastating. Before "cocktail hour," she and I were sitting in front of the tube, and an ad for chocolate came on. This made her want a square of chocolate, so I got up and brought her one. She took a bite of it and said, "Here," and pointed to the television with the half-eaten piece in her hand. I replied, "You mean me? I had a bite, I'm all set, thanks." And she said, "No, for the girl!" "What girl, Mom?" "The girl in the t.v.!"
Well, I told her we couldn't give it to the girl in the t.v. because, well, she was in the t.v., and then I added, plus, she just ate a square, so she was all set, too. "Oh."
At another point, when she began to get fidgety in her chair, I asked her if she wanted.. oh, I don't, something like, me to turn on the television. "No!" she said, "I've got work to do!"
Sometimes, I'll try and distract her by having her "help" me with small tasks. They say this is helpful, and I do find it works, though the limited use of her arm still makes it frustrating for her.
The worst part is her confusion about "home." This concept of home, what does it mean to her? I still think it's a cry out to "get her out of her own head." Home means being normal again. And it hurts to not be able to get her back to that.
She cries out for Dad a lot, too, even if he's not there. I have to remind her that he's either out or downstairs or taking a walk or on the phone or in the bathroom taking a leak (like he just said to her a minute earlier.)
Our patience is tested constantly. Our hearts are heavy with her agony and our minds our cluttered with all of the things we are encouraged to do for Mom's comfort and health. Their are small moments of lightness, when her confusion does make her say something funny, or when she does have a tiny moment of clarity. She still has razor sharp hearing, and she does respond well to gentle touch. Just holding her hand or caressing her head or neck is soothing to her.
But the painful reality is that it is so frustrating to be unable to take away her confusion, discomfort and fear.
Wednesday, March 30, 2011
Random Observations
The pattern the last few days, from my perspective, seems to be: Mom rises, has her pills and juice and nibbles on some breakfast. Dozes in chair most of the morning. Has lunch. Dozes some more. We try and get her to participate in little activities (a walk, some exercises, yesterday we took her for a little drive in the car), then more dozing, then at four she takes her pill, then she becomes agitated and confused for a while. This is when I usually go home.
Dad has been amazing. We still need to work on creative food ideas. Somebody needs to write a recipe book for people who are caregivers of people with A.D. Don't look at me, I have a hard enough time coming up with ideas for my own meals.
When Mom gets agitated (which she was very much yesterday, she was depressed and snappy), I believe it boils down to this: she's pissed that she can't communicate or do anything, and she's pissed that she is suffering from this disease.
And I don't blame her one bit.
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| March 28, 2011 |
Dad has been amazing. We still need to work on creative food ideas. Somebody needs to write a recipe book for people who are caregivers of people with A.D. Don't look at me, I have a hard enough time coming up with ideas for my own meals.
When Mom gets agitated (which she was very much yesterday, she was depressed and snappy), I believe it boils down to this: she's pissed that she can't communicate or do anything, and she's pissed that she is suffering from this disease.
And I don't blame her one bit.
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.
Thursday, March 17, 2011
Another Bad Day
So, this was what they call "a bad day" for Mom. When I got over there at nine forty-five in the morning, she was still in bed, and Dad was rushing around trying to get his stuff together for another trip down town for an eye appointment and other errands. He got her out of bed, then I took over from there. Before I joined her in the bathroom, though, I read some notes Dad had wrote down in the notebook, both last night and early this morning.
Last night, she had moments of restlessness, then she ate fairly well at dinner and eventually settled down and watched television with Dad. By twenty minutes past eight, she wanted to go to bed. Around four in the morning, he was awoken by her trying to get up. He said she got up and down several times, eventually ending up on the toilet to pee. She had trouble wiping herself, and at one point, he wrote, she tried to put the toilet paper in her mouth. Back in bed, she began to babble, asking to "Go home," "Were the children okay," and even, "Where is my husband?" He finally gave in and gave her two of the Ativan pills (the mild sedatives), but they didn't seem to work, he thought.
After awhile, they fell back asleep, but naturally, it was harder for him to get back into a good sleep. Armed with this new information, I helped her at the toilet, then got her dressed. She moaned horribly about pain in one of her left toes, so once I had her settle in her chair in the living room and gave her her two morning pills and juice, I went and got a wash rag and soaked it in warm water and applied it to her toes. She said this made her feel better. I went on and made her a hard boiled egg, of which she ate three quarters of, plus most of half of a banana and a glass of Ensure. She stayed in the chair for a while with her eyes closed, listening to the music from the movie "Finnegens Wake," which was playing on Turner Classic Movies.
By this time, Dad was gone, and I just sat with Mom, eventually moving her to the couch. Around noon, the occupational therapist, Gwen, arrived, for her third visit with us, and I filled her in on the depressing events of the day. Gwen came and sat with Mom and asked her a few questions, one of them being, "Do you know where you are?" and Mom replied, "I'm home, in Maine." When I asked her that same question yesterday, she replied that she was home in Massachusetts. Go figure.
There wasn't a whole lot Gwen could do today, so I think just having her there, sitting and chatting, made it enough of an event to say something happened today. Mom's eyes were closed most of the time and she was much grumpier and short tempered then usual. Gwen reminded me that their are going to be good days and bad days, and this was one of the latter. We also managed to discuss my concern for Dad's health and sanity, like his inability to get a good night's sleep. She suggested I might consider sleeping over some night, so that Dad could sleep elsewhere in the house. I told her I had already considered that, and when I brought that up with Mom, I asked her if she thought that would be fun, and she said, "No, I don't think so."
The O.T. left, Dad came home, and I left to run some last minute errands for our planned afternoon dinner. When I got home, Dad called and admitted that he was just too tired to pack Mom up and come over here, so we agreed to pack up the meal and haul it over there. I was hoping Mom would perk up a little at the prospect of a little celebratory dinner, like she did last Saturday night with the rest of the family, but she remained kind of cranky and groggy. She did sit at the table with us, though, and ate a decent amount of the corned beef and veggies, and seemed to enjoy it. But soon enough, before any of the rest of us where finished eating, she wanted up, so I helped her up and back to her chair. She got up once or twice more as we finished eating, even coming back to her plate and eating another bite of food with her fingers, and then we cleared the dishes and I put out dessert. I had received a package in the mail yesterday with four speciality cupcakes shipped from California, with a card in the box that said "Thinking of you," from a wonderful friend and her husband up here. My friend just lost her mother to Alzheimer's Disease early last month, so her empathy for my experience is profound. I thought it appropriate to share these treats with my parents today, and they were delicious and unique.
I did the dishes and then stood in the hallway, while Mom was on the couch, and Dad began to share some day to day stuff with me. Soon enough, however, we were interrupted by Mom, who was disturbed by our conversation. So, Dad and I went and sat with her, turning off the television and quietly conversing for a few more minutes. Mom stirred then, and I helped her use the toilet. I was sitting on the bath tub in front of her, waiting for her to finish, and when she was done she said to me, "Tell the girl I'm ready now." "That's me, Mom, here we go," I replied, and helped her pull up her panties and pants. I settled her back onto the couch, and Dad said he thought he'd like to lie down on their bed for a nap, as much as he didn't want to mess up his sleep routine. Mom seemed content, so I decided to go home.
Back home, my partner and I discussed the situation some more. Mom was really confused a lot today, sometimes saying things completely out of context. At one point she said, "Come on, it's time to go." "Where?" I asked. "Next door! To our apartment!" Other times, just stuff that made no sense at all. Is today just a bad day? Will she be better tomorrow? How much longer can Dad go on without seriously jeopardizing his health? We know for a fact this is only going to get worse.
And then you begin to get pissed off about all the drugs. What's the point, you wonder, in "slowing down the disease," when it's only prolonging the confusion and suffering? How long do you try and keep them home, where they are loved and cared for, though they don't even know where they are anymore? How do you make decisions for people who can no longer make decisions for themselves?
My partner and I concluded that there simply is no "right" answer to the multi-faceted questions involved with this disease. Everybody reacts differently to all of the drugs and methods to alleviate the symptoms, and meanwhile, there is no cure and worse, the person continues to suffer a miserable existence until they die. On top of that, the care givers sacrifice and suffer, too. Have we done all we can? Is there more we could do? Who has the answers? Nobody, that's who.
Hopefully, tomorrow we'll see a brighter eyed Mom.
Last night, she had moments of restlessness, then she ate fairly well at dinner and eventually settled down and watched television with Dad. By twenty minutes past eight, she wanted to go to bed. Around four in the morning, he was awoken by her trying to get up. He said she got up and down several times, eventually ending up on the toilet to pee. She had trouble wiping herself, and at one point, he wrote, she tried to put the toilet paper in her mouth. Back in bed, she began to babble, asking to "Go home," "Were the children okay," and even, "Where is my husband?" He finally gave in and gave her two of the Ativan pills (the mild sedatives), but they didn't seem to work, he thought.
After awhile, they fell back asleep, but naturally, it was harder for him to get back into a good sleep. Armed with this new information, I helped her at the toilet, then got her dressed. She moaned horribly about pain in one of her left toes, so once I had her settle in her chair in the living room and gave her her two morning pills and juice, I went and got a wash rag and soaked it in warm water and applied it to her toes. She said this made her feel better. I went on and made her a hard boiled egg, of which she ate three quarters of, plus most of half of a banana and a glass of Ensure. She stayed in the chair for a while with her eyes closed, listening to the music from the movie "Finnegens Wake," which was playing on Turner Classic Movies.
By this time, Dad was gone, and I just sat with Mom, eventually moving her to the couch. Around noon, the occupational therapist, Gwen, arrived, for her third visit with us, and I filled her in on the depressing events of the day. Gwen came and sat with Mom and asked her a few questions, one of them being, "Do you know where you are?" and Mom replied, "I'm home, in Maine." When I asked her that same question yesterday, she replied that she was home in Massachusetts. Go figure.
There wasn't a whole lot Gwen could do today, so I think just having her there, sitting and chatting, made it enough of an event to say something happened today. Mom's eyes were closed most of the time and she was much grumpier and short tempered then usual. Gwen reminded me that their are going to be good days and bad days, and this was one of the latter. We also managed to discuss my concern for Dad's health and sanity, like his inability to get a good night's sleep. She suggested I might consider sleeping over some night, so that Dad could sleep elsewhere in the house. I told her I had already considered that, and when I brought that up with Mom, I asked her if she thought that would be fun, and she said, "No, I don't think so."
The O.T. left, Dad came home, and I left to run some last minute errands for our planned afternoon dinner. When I got home, Dad called and admitted that he was just too tired to pack Mom up and come over here, so we agreed to pack up the meal and haul it over there. I was hoping Mom would perk up a little at the prospect of a little celebratory dinner, like she did last Saturday night with the rest of the family, but she remained kind of cranky and groggy. She did sit at the table with us, though, and ate a decent amount of the corned beef and veggies, and seemed to enjoy it. But soon enough, before any of the rest of us where finished eating, she wanted up, so I helped her up and back to her chair. She got up once or twice more as we finished eating, even coming back to her plate and eating another bite of food with her fingers, and then we cleared the dishes and I put out dessert. I had received a package in the mail yesterday with four speciality cupcakes shipped from California, with a card in the box that said "Thinking of you," from a wonderful friend and her husband up here. My friend just lost her mother to Alzheimer's Disease early last month, so her empathy for my experience is profound. I thought it appropriate to share these treats with my parents today, and they were delicious and unique.
I did the dishes and then stood in the hallway, while Mom was on the couch, and Dad began to share some day to day stuff with me. Soon enough, however, we were interrupted by Mom, who was disturbed by our conversation. So, Dad and I went and sat with her, turning off the television and quietly conversing for a few more minutes. Mom stirred then, and I helped her use the toilet. I was sitting on the bath tub in front of her, waiting for her to finish, and when she was done she said to me, "Tell the girl I'm ready now." "That's me, Mom, here we go," I replied, and helped her pull up her panties and pants. I settled her back onto the couch, and Dad said he thought he'd like to lie down on their bed for a nap, as much as he didn't want to mess up his sleep routine. Mom seemed content, so I decided to go home.
Back home, my partner and I discussed the situation some more. Mom was really confused a lot today, sometimes saying things completely out of context. At one point she said, "Come on, it's time to go." "Where?" I asked. "Next door! To our apartment!" Other times, just stuff that made no sense at all. Is today just a bad day? Will she be better tomorrow? How much longer can Dad go on without seriously jeopardizing his health? We know for a fact this is only going to get worse.
And then you begin to get pissed off about all the drugs. What's the point, you wonder, in "slowing down the disease," when it's only prolonging the confusion and suffering? How long do you try and keep them home, where they are loved and cared for, though they don't even know where they are anymore? How do you make decisions for people who can no longer make decisions for themselves?
My partner and I concluded that there simply is no "right" answer to the multi-faceted questions involved with this disease. Everybody reacts differently to all of the drugs and methods to alleviate the symptoms, and meanwhile, there is no cure and worse, the person continues to suffer a miserable existence until they die. On top of that, the care givers sacrifice and suffer, too. Have we done all we can? Is there more we could do? Who has the answers? Nobody, that's who.
Hopefully, tomorrow we'll see a brighter eyed Mom.
Friday, March 11, 2011
Thursday
Thursday, we just had one visit from the Occupational Therapist. She wanted to observe how Mom used the shower/bath chair, and Mom seemed to pass the test. She asked a few other questions, we asked a few questions about home safety, and then she scooted out (it was snowing and we were all concerned she might not be able to get out and up the road, but she did.)
Mom was pretty calm, for her. My observation is that the "haldol" is working to the point where it takes some of the compulsion to feel anxiety off. The confusion and anxiety is still there, but it is pulled back some by the drug. She wants to care, but now she's just too darn "chill" to care. I wouldn't want to see her on any higher of a dosage, as it's important to have Mom be as true to her core self as possible, I think.
The only other current frustration now is back to food, eating. Her appetite is fickle and Dad tries his best to create tasty, healthy meals. I pitch in when I can, make suggestions when I can, but short of me moving in there, I can't possibly be there and plan and organize every meal, every day, for them as well as my household. Besides, Dad likes to be in charge of all that.
Another rainy day, and today we should see Nurse M. and possibly the home health worker, too. Dad has an appointment with Dr. N. himself today, so I'll be over there with Mom while he goes to that.
Mom was pretty calm, for her. My observation is that the "haldol" is working to the point where it takes some of the compulsion to feel anxiety off. The confusion and anxiety is still there, but it is pulled back some by the drug. She wants to care, but now she's just too darn "chill" to care. I wouldn't want to see her on any higher of a dosage, as it's important to have Mom be as true to her core self as possible, I think.
The only other current frustration now is back to food, eating. Her appetite is fickle and Dad tries his best to create tasty, healthy meals. I pitch in when I can, make suggestions when I can, but short of me moving in there, I can't possibly be there and plan and organize every meal, every day, for them as well as my household. Besides, Dad likes to be in charge of all that.
Another rainy day, and today we should see Nurse M. and possibly the home health worker, too. Dad has an appointment with Dr. N. himself today, so I'll be over there with Mom while he goes to that.
Monday, February 28, 2011
Somewhere Outside Of France
Despite our excitement over the prospect of professional help coming to the house with the Hospice agency, as well as Mom bouncing back a little bit from the over-medication incident, let's face it - she's deep into this disease and it's only getting worse.
As Dad reported in his comment on my post from yesterday, Mom rose early today and went out to the living room for juice and pills, but refused food, except for one or two bites of an egg. Soon after that, she wanted to go back to bed, and that's where she still was when I arrived a little after eleven in the morning. She called out, "Who is that?" when I entered the house, and once I took off my boots and coat and hat and entered the bedroom, she babbled quite a bit. She mentioned something about feeling like she needed to get back home, and finally I just went along with it, asking, "Well, where are you then?" And she replied that she was somewhere outside of France.
After a while, we got her up to the chair, but it wasn't long before she wanted to be on the couch. She would not eat, but she did drink Ensure and water. There were many trips to the bathroom for peeing through out the time I was there, and a little bit of walking around. She did want to have the beautiful bouquet of flowers my sister brought up moved to the dinning room table. She seemed intent on cleaning off the marble table that is next to her regular chair today. Usually it's cluttered with tissues and napkins, toothpicks and water glasses.
She was very cranky and verbally combative today. She complained a lot about her right arm. She continued to say things that made no sense, only to her. We try our best to understand what her true meanings are. It's difficult.
Dad was depressed today. The snow was falling all morning into the afternoon, switching over to a light freezing rain for the last hour or two. We couldn't go anywhere. He's worried about getting enough sleep tonight (and he didn't sleep very well last night), because he's got the appointment with the elder care lawyer tomorrow in the city an hour away. I'm a little worried about being alone with her for the three or four hours he will be away. It's possible we could have someone from the agency come up to assist me with her tomorrow, but it's not confirmed yet. I can probably handle it alone, but you never know where the disease may make her turn next.
And she's not eating. We weighed her during one of the bathroom breaks, and the scale stuck at one hundred pounds. Perhaps the coming week will feel more hopeful, but all in all, this disease blows, and it hurts like hell to see such a beautiful, intelligent woman become so helpless and pathetic.
As Dad reported in his comment on my post from yesterday, Mom rose early today and went out to the living room for juice and pills, but refused food, except for one or two bites of an egg. Soon after that, she wanted to go back to bed, and that's where she still was when I arrived a little after eleven in the morning. She called out, "Who is that?" when I entered the house, and once I took off my boots and coat and hat and entered the bedroom, she babbled quite a bit. She mentioned something about feeling like she needed to get back home, and finally I just went along with it, asking, "Well, where are you then?" And she replied that she was somewhere outside of France.
After a while, we got her up to the chair, but it wasn't long before she wanted to be on the couch. She would not eat, but she did drink Ensure and water. There were many trips to the bathroom for peeing through out the time I was there, and a little bit of walking around. She did want to have the beautiful bouquet of flowers my sister brought up moved to the dinning room table. She seemed intent on cleaning off the marble table that is next to her regular chair today. Usually it's cluttered with tissues and napkins, toothpicks and water glasses.
She was very cranky and verbally combative today. She complained a lot about her right arm. She continued to say things that made no sense, only to her. We try our best to understand what her true meanings are. It's difficult.
Dad was depressed today. The snow was falling all morning into the afternoon, switching over to a light freezing rain for the last hour or two. We couldn't go anywhere. He's worried about getting enough sleep tonight (and he didn't sleep very well last night), because he's got the appointment with the elder care lawyer tomorrow in the city an hour away. I'm a little worried about being alone with her for the three or four hours he will be away. It's possible we could have someone from the agency come up to assist me with her tomorrow, but it's not confirmed yet. I can probably handle it alone, but you never know where the disease may make her turn next.
And she's not eating. We weighed her during one of the bathroom breaks, and the scale stuck at one hundred pounds. Perhaps the coming week will feel more hopeful, but all in all, this disease blows, and it hurts like hell to see such a beautiful, intelligent woman become so helpless and pathetic.
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.
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.
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?
Wednesday, January 5, 2011
Side Effects Of Namenda (Memantine)
What side effects can this medication cause?
Memantine may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
- extreme tiredness
- dizziness
- confusion
- headache
- sleepiness
- constipation
- vomiting
- pain anywhere in your body, especially your back
- coughing
Some side effects can be serious. The following symptoms are uncommon, but if you experience any of them, call your doctor immediately:
- shortness of breath
- hallucination
I found this brief description of the possible side effects of Namenda, a drug used to lessen the symptoms of Alzheimer's Disease on this web site. This is the U.S. National LIbrary of Medicine National Institutes of Health.
Based on this list, from what I've observed since Mom has been on this drug, she has exhibited the following symptoms:
- extreme tiredness
- dizziness
- confusion
- sleepiness
- pain anywhere in your body, especially your back
- coughing (not extreme)
- shortness of breath
- hallucination
Okay. So, Dr. N. decided to cut the Namenda out of her treatment. Good call, I hope, for Mom's sake. The down side is, she could begin to experience more cognitive decline. This is disturbing, indeed, but nothing we shouldn't be surprised about.
Because there is no cure for Alzheimer's Disease.
Today Mom was pretty off. It could have been an after effect of her being at the doctor yesterday, getting examined, leaving the house, stressing out while she and I waited in the car while Dad ran into the market on the way home from the doctor's office - and then this morning, having her weekly bath with Maria. Naturally, Dad, Maria and I discussed some things (with Mom present, of course) and this only aggravated her mood. Dad thought she might be stressed about expecting a planned phone call later in the early afternoon from their very old and dear friends in Holland, but even when I went back over for a visit in the afternoon, all she wanted to do was read her book or be read to by me. As we approached the four o'clock hour, her anxiety really kicked up a notch; pacing, sitting, standing, questioning, expecting, disoriented.
I am hopeful and scared at the same time about the tapering off of the Namenda drug. All we can do is wait and see. Meanwhile, the doctor did prescribe a mild sedative which we can have on hand in case she has another hallucinatory breakdown which we can not calm her down from by words and caressing and reassurance alone.
Snow storms on the horizon, more appointments for Dad over the next two days scheduled, and a busy weekend for me and my partner. If only it wasn't winter, if only we didn't live so remotely, if only Mom didn't have this hateful disease.
Thursday, December 30, 2010
Calm Christmas
The Christmas holiday went well. Mom was a trooper, and so were all the guests. We all contributed to the preparing and clean up of meals, and everybody was respectful towards Mom and Dad's need for relative quite and calm.
One of the highlights was Christmas Eve, when eight of us drove over to the church in two vehicles to attend the Christmas Eve service and watch Dad perform in the choir. When the eight of us strolled in just before the service was to begin, all eyes seemed to be on Mom as she said hello to a few people and waved to her friends in the choir. It was touching to see the kind and loving smiles on their faces. Mom was a bit shaky at first, and it took us a few moments to settle on the second pew in right in front of Dad's place in the choir group. When it came time to sing carols, I helped Mom hold the book and sometimes I followed the verses with my finger so she wouldn't get lost. Luckily, she remembered most of the words by heart. At the end of the service, many of the folks swarmed Mom to give her hugs and Merry Christmas wishes, and she really lit up.
Christmas day was fairly mild and sunny, and we took our time going through the gifts. Eventually, Mom got tired and needed to rest on her bed, and shortly after that, Dad joined her. The rest of us mutually decided to give them some quite, and we all slunk outside and came over to my house. After about an hour, some of them went back to start lunch, and my partner and I began to prepare the Christmas dinner, which was a rich and delicious seafood chowder. Shortly after cleanup, a smaller group of us retreated again back to my house for a video and some jamming, leaving just a few quite people left with Mom and Dad at their house.
Sunday morning, they all left quite early, and Mom and Dad were left not too frazzled at all by the holiday madness! Success!
Secretly, I was preparing myself for a possible bout of depression from Mom in the days following the Christmas weekend, but to my surprise, she was fairly even keeled. The was a huge, hallowing snow blizzard on Sunday night and all day Monday, but even that did not set her back too badly. Over the next two days, I slowly read aloud the final chapters of "The Secret Garden" to her, and when it was over, we discussed one of the themes in the book, which is essentially the power of positive thinking. Before I left there yesterday, she remarked again to me that she still couldn't understand what had caused her to have the breakdown last Tuesday night, which led us to admit her to the local Emergency Room. I think it's good that she still remembers the incident and is aware that it happened at all. She's been fairly diligent to keep hydrated with water, in hopes of avoiding another breakdown. Whether or not being dehydrated was the cause of it is still in question, but keeping her hydrated certainly can't hurt.
Yesterday afternoon, I helped Mom write a birthday card to her oldest son, who has the unfortunate date of birth on January second. Her handwriting has gone from perfect and flowing to scrawled and childlike, and though she was very frustrated writing the words in the card, she did it with our encouragement. Dad looked at the card and seemed profoundly depressed at the site of her handwriting. He admitted to me just before I left yesterday that he was a little depressed. At least he's not afraid to admit it. It's so important to be honest with ourselves about our feelings over this journey.
Today is another mild and sunny day, and I will be heading over there shortly to collect the garbage and recyclables and bring it all to the dump. I'd like to try and get Mom outside for a short walk about today, too.
Mom has an appointment with her primary care physician early next week. Should I go with them?
One of the highlights was Christmas Eve, when eight of us drove over to the church in two vehicles to attend the Christmas Eve service and watch Dad perform in the choir. When the eight of us strolled in just before the service was to begin, all eyes seemed to be on Mom as she said hello to a few people and waved to her friends in the choir. It was touching to see the kind and loving smiles on their faces. Mom was a bit shaky at first, and it took us a few moments to settle on the second pew in right in front of Dad's place in the choir group. When it came time to sing carols, I helped Mom hold the book and sometimes I followed the verses with my finger so she wouldn't get lost. Luckily, she remembered most of the words by heart. At the end of the service, many of the folks swarmed Mom to give her hugs and Merry Christmas wishes, and she really lit up.
 |
| December 24, 2010 |
Christmas day was fairly mild and sunny, and we took our time going through the gifts. Eventually, Mom got tired and needed to rest on her bed, and shortly after that, Dad joined her. The rest of us mutually decided to give them some quite, and we all slunk outside and came over to my house. After about an hour, some of them went back to start lunch, and my partner and I began to prepare the Christmas dinner, which was a rich and delicious seafood chowder. Shortly after cleanup, a smaller group of us retreated again back to my house for a video and some jamming, leaving just a few quite people left with Mom and Dad at their house.
Sunday morning, they all left quite early, and Mom and Dad were left not too frazzled at all by the holiday madness! Success!
Secretly, I was preparing myself for a possible bout of depression from Mom in the days following the Christmas weekend, but to my surprise, she was fairly even keeled. The was a huge, hallowing snow blizzard on Sunday night and all day Monday, but even that did not set her back too badly. Over the next two days, I slowly read aloud the final chapters of "The Secret Garden" to her, and when it was over, we discussed one of the themes in the book, which is essentially the power of positive thinking. Before I left there yesterday, she remarked again to me that she still couldn't understand what had caused her to have the breakdown last Tuesday night, which led us to admit her to the local Emergency Room. I think it's good that she still remembers the incident and is aware that it happened at all. She's been fairly diligent to keep hydrated with water, in hopes of avoiding another breakdown. Whether or not being dehydrated was the cause of it is still in question, but keeping her hydrated certainly can't hurt.
Yesterday afternoon, I helped Mom write a birthday card to her oldest son, who has the unfortunate date of birth on January second. Her handwriting has gone from perfect and flowing to scrawled and childlike, and though she was very frustrated writing the words in the card, she did it with our encouragement. Dad looked at the card and seemed profoundly depressed at the site of her handwriting. He admitted to me just before I left yesterday that he was a little depressed. At least he's not afraid to admit it. It's so important to be honest with ourselves about our feelings over this journey.
Today is another mild and sunny day, and I will be heading over there shortly to collect the garbage and recyclables and bring it all to the dump. I'd like to try and get Mom outside for a short walk about today, too.
Mom has an appointment with her primary care physician early next week. Should I go with them?
Tuesday, December 21, 2010
The Secret Garden
Friday, Maria was able to come and bathe Mom. She dressed her in a green outfit and attached the little Christmas tree pin to her sweater that I had pulled out a few days earlier and left on the dresser.
I don't remember a lot of details about Friday or Saturday, but Mom did do a lot of movie watching and napping.. Saturday night they had dinner at her sister's house. I remember that she was pretty antsy about getting ready to go over there early Saturday afternoon. She kept wanting to sleep, then get ready, then sleep.. She seemed pretty needy that afternoon.. I finally stalled some time by offering to help her put on lipstick and comb her hair and re-pin the Christmas tree pin to her sweater.
Sunday morning I got up early to stay with her while Dad attended choir rehearsal, the church service and caroling with his choir in the afternoon. Mom and I chilled in the morning, with the television and magazines, then I made her a small turkey and cheese sandwich, with a few chips and some tangerine slices. I begged her to finish the last two bites of the second quarter of the sandwich, and she claimed she "didn't like the cheese." I was feeling a bit ornery myself and I argued with her "oh, yes you do." "No I don't!" "Yes you do, now eat it!" "I DON'T LIKE THE CHEESE and I DON'T WANT TO EAT IT!"
Ugh. I messed up there. She got frumpy and we both got teary-eyed. I let it go, returned her lunch tray to the kitchen and we made up by admitting to each other that this is hard for both of us. Then I asked her what could we do to get us "out of this funk."
"Read to me?"
So, I found a book on her shelf, a beautiful copy of "The Secret Garden," by Frances Hodgson Burnett. Perfect. On Friday or Saturday, I think it was, I had read to her from a published local book Dad picked up. In the back of the book is a sermon that Mom had written and read at her church on Easter Sunday in April of 2006. It's called "The Inner Garden," and it talks about the relationship between gardens and your inner life... it also goes into the clues and steps that led her towards her journey of earning a landscape design certificate from Radcliff College and how much she loved her work as a landscape designer. She references "The Secret Garden" story. It is all very beautiful and so very much a light on her passions in her life.
So, we began the lovely tale of the little abandoned Mary Lennox and her discovery of the secret garden at the giant manor on the moors in England. We are both loving it.
Finally, her friend from church arrived to stay with Mom until Dad got home so that I could go to my afternoon gig.
Except I ended up staying home. I was too emotionally drained, crying when I got home in the loving arms of my partner. He encouraged me to stay home if that's what would make me feel better, and I'm glad I did. I got more comfort from my kitties after he left, got something to eat, then walked back over a couple of hours later. Dad was home and Mom was still happily chatting away with their friend, who had a ball staying with Mom, reading to her and having tea. She offered to help in anyway, anytime she could. It was really nice.
Relieved, I went back home to my kitties and a few sappy Christmas movies, flopped on the couch and tried to emotionally regroup.
Monday afternoon I zipped over around two in the afternoon, after finally getting a chance to do a little Christmas present and food shopping. I shut the television off and read to her for almost two hours from
"The Secret Garden." Dad was able to nap, take a short walk, bring in firewood and do some computer stuff. Mom and I are really enjoying the book, and I can't wait to get back to it when I go over later today.
I don't remember a lot of details about Friday or Saturday, but Mom did do a lot of movie watching and napping.. Saturday night they had dinner at her sister's house. I remember that she was pretty antsy about getting ready to go over there early Saturday afternoon. She kept wanting to sleep, then get ready, then sleep.. She seemed pretty needy that afternoon.. I finally stalled some time by offering to help her put on lipstick and comb her hair and re-pin the Christmas tree pin to her sweater.
Sunday morning I got up early to stay with her while Dad attended choir rehearsal, the church service and caroling with his choir in the afternoon. Mom and I chilled in the morning, with the television and magazines, then I made her a small turkey and cheese sandwich, with a few chips and some tangerine slices. I begged her to finish the last two bites of the second quarter of the sandwich, and she claimed she "didn't like the cheese." I was feeling a bit ornery myself and I argued with her "oh, yes you do." "No I don't!" "Yes you do, now eat it!" "I DON'T LIKE THE CHEESE and I DON'T WANT TO EAT IT!"
Ugh. I messed up there. She got frumpy and we both got teary-eyed. I let it go, returned her lunch tray to the kitchen and we made up by admitting to each other that this is hard for both of us. Then I asked her what could we do to get us "out of this funk."
"Read to me?"
So, I found a book on her shelf, a beautiful copy of "The Secret Garden," by Frances Hodgson Burnett. Perfect. On Friday or Saturday, I think it was, I had read to her from a published local book Dad picked up. In the back of the book is a sermon that Mom had written and read at her church on Easter Sunday in April of 2006. It's called "The Inner Garden," and it talks about the relationship between gardens and your inner life... it also goes into the clues and steps that led her towards her journey of earning a landscape design certificate from Radcliff College and how much she loved her work as a landscape designer. She references "The Secret Garden" story. It is all very beautiful and so very much a light on her passions in her life.
So, we began the lovely tale of the little abandoned Mary Lennox and her discovery of the secret garden at the giant manor on the moors in England. We are both loving it.
Finally, her friend from church arrived to stay with Mom until Dad got home so that I could go to my afternoon gig.
Except I ended up staying home. I was too emotionally drained, crying when I got home in the loving arms of my partner. He encouraged me to stay home if that's what would make me feel better, and I'm glad I did. I got more comfort from my kitties after he left, got something to eat, then walked back over a couple of hours later. Dad was home and Mom was still happily chatting away with their friend, who had a ball staying with Mom, reading to her and having tea. She offered to help in anyway, anytime she could. It was really nice.
Relieved, I went back home to my kitties and a few sappy Christmas movies, flopped on the couch and tried to emotionally regroup.
Monday afternoon I zipped over around two in the afternoon, after finally getting a chance to do a little Christmas present and food shopping. I shut the television off and read to her for almost two hours from
"The Secret Garden." Dad was able to nap, take a short walk, bring in firewood and do some computer stuff. Mom and I are really enjoying the book, and I can't wait to get back to it when I go over later today.
Sunday, December 5, 2010
Love And Misery
Two things Mom exclaimed at one point yesterday morning;
"ARG! This is a such a crappy way to die!"
("Yes Mom, it really is. But you are not dead yet, and neither am I or Dad, so let's concentrate on living right now, okay?")
"Are they all coming up here for Christmas? I don't want them to!"
(No comment from me.)
Every single breathing moment, Mom is in angst. While the rest of us are busy making plans for the holidays, living our busy lives, preparing meals and decorating our homes, Mom's life is a big warbled swirl of confusion and frustration and misery.. with only slight moments of murky joy.
All I want to do is comfort her in every moment that I can, in any meager way that I can. Love, understanding, empathy, comfort and love love love..
Such a crappy way to die, indeed.
"ARG! This is a such a crappy way to die!"
("Yes Mom, it really is. But you are not dead yet, and neither am I or Dad, so let's concentrate on living right now, okay?")
"Are they all coming up here for Christmas? I don't want them to!"
(No comment from me.)
Every single breathing moment, Mom is in angst. While the rest of us are busy making plans for the holidays, living our busy lives, preparing meals and decorating our homes, Mom's life is a big warbled swirl of confusion and frustration and misery.. with only slight moments of murky joy.
All I want to do is comfort her in every moment that I can, in any meager way that I can. Love, understanding, empathy, comfort and love love love..
Such a crappy way to die, indeed.
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