It was an emotional weekend with my siblings and nephew and in laws visiting Mom at the Hospice House. They were very shook up seeing Mom so unresponsive and frail.
Dad and I stayed home on Sunday (well, he went to church, and I took the day off from my gig), and I did a lot of weeping off and on all day. Dad and I shared a meal alone on Sunday night.
The doctor told us on Saturday that it appeared to him that Mom may die within the next few weeks. She has been taken off of Haldol all together. Mom has eaten very little, mostly on a liquid diet. She hasn't been eliminating.
I am not a care giver anymore. Just a close family member at the mercy of this passing of time.
Dad and I are going up shortly. We are meeting the minister from his church, who has offered to drive us to the House from there and back.
I am behind on my bills and my banking and my laundry and my kitchen is cleaned out of food. Tough time, this waiting.
Showing posts with label siblings. Show all posts
Showing posts with label siblings. Show all posts
Monday, May 9, 2011
Thursday, May 5, 2011
Visit With Mom Today
Dad and I left at ten in the morning, arriving at the Hospice House at eleven-thirty. Mom was in bed, resting comfortably, with a little smile on her face. She did acknowledge our presence to a point. We were informed that she had complained of pain earlier that morning, so she had been given a small dose of morphine. I had brought a framed photo from their house that had been taken about ten years ago. It's a line up of her and Dad, with us four "kids." She mostly kept her eyes shut, but I think she saw it. I put in on the table by her bedside.
About twenty minutes after we arrived, she somehow communicated to me that she needed to pee. I flagged down the on-call CNA, and together, with much effort, we got her out of the bed. We quickly realized she was too weak and unable to walk, so the CNA brought the portable commode over and placed it right next to the bed. We plopped her down on that, and after a while, she finally peed. We got her back in bed and propped her back up again.
A little after twelve noon, the Hospice House social worker, Jamie, knocked on the door. We three left Mom's room (she was snoozing anyway) and went to another room for a meeting that lasted nearly one hour. We mostly talked about getting Dad signed up with Maine Care, which would help him pay for more help once Mom got back home. Maine Care would pay for up to thirty-two hours a week for extra help. We mostly would need evening help, which makes it a little harder, as we live in such a remote area. Also, the home health workers (which would be separate from our Hospice agency), are not allowed to administer medications. If Mom was to wake up in the middle of the night, Dad would have to be awoken in order to administer the medication.
After our meeting with the social worker, we went back to see Mom. It was a little after one.
By this time, we had run into our friend, Debra, who also happens to be a nurse on our Hospice team. She had had a monthly meeting there at the facility earlier in the day and stuck around in order to spend some time with us. On her free time.
As we hovered around Mom in her bed, the afternoon nurse was in and out, filling us in on some of the last few hours with Mom as well as questioning us more about Mom and her life. As Dad, Debra and I were happily opining on Mom and her many life achievements and accolades (cutting each other off with each new memory of wonderfulness), the team chaplain, Lissa, swung by and joined the crowd. Mom continued to lay there, half doped-up, half ravaged by her disease, her eyes closed but dancing in her sockets, grabbing at as many of the words and trails as she could.
One by one, the crowd gracefully thinned, and again, it was just me and Dad left in the room with Mom. When Mom called for me and expressed she needed to pee, I paged a nurse. We began to move Mom in order to rise her towards the portable commode, but she began to moan in pain, so we let her rest some more. More time went by, then she expressed she really needed to pee. I paged for help again.
A different woman came this time, and we realized we needed the bed pan. With more effort, the nurse and I rolled and shifted Mom onto the bed pan. But she couldn't pee. We tried different methods, we waited, but nothing happened. I asked this nurse if this was common, and she said yes, that sometimes it's hard to get used to. With no luck, we got her comfortable again, and she dozed off, sort of. Then it was time for Dad and me to go. She did not make much of a fuss when we said goodbye. I had told her earlier we would be back on Saturday, with the siblings and a small birthday celebration.
On our way out, we ran into the doctor. He stopped us and told us that Mom has had two calm nights of sleep. She only made a fuss the first afternoon after we left, which was quickly resolved, and then this morning, when she complained of pain. That's when they gave her the small dose of Morphine. She's only been on the 1 mg. of the anti-psychotic drug, Haldol. He said she is not eating much. I said you have to coax her to eat. He stressed that they were.
Then he summed it up. He said "it doesn't look good."
He thought maybe Mom was hovering around stage 6c or 6d of the disease.
I called my sister and sister in law when I got home. My sister, older brother and nephew will come up tomorrow night, and we will go visit Mom on Saturday. My younger brother and sister in law will come up Saturday night, and go visit Mom alone on Sunday. I might go up tomorrow alone, because I wonder how much time is left. And maybe I could read to her a little bit more.
About twenty minutes after we arrived, she somehow communicated to me that she needed to pee. I flagged down the on-call CNA, and together, with much effort, we got her out of the bed. We quickly realized she was too weak and unable to walk, so the CNA brought the portable commode over and placed it right next to the bed. We plopped her down on that, and after a while, she finally peed. We got her back in bed and propped her back up again.
A little after twelve noon, the Hospice House social worker, Jamie, knocked on the door. We three left Mom's room (she was snoozing anyway) and went to another room for a meeting that lasted nearly one hour. We mostly talked about getting Dad signed up with Maine Care, which would help him pay for more help once Mom got back home. Maine Care would pay for up to thirty-two hours a week for extra help. We mostly would need evening help, which makes it a little harder, as we live in such a remote area. Also, the home health workers (which would be separate from our Hospice agency), are not allowed to administer medications. If Mom was to wake up in the middle of the night, Dad would have to be awoken in order to administer the medication.
After our meeting with the social worker, we went back to see Mom. It was a little after one.
By this time, we had run into our friend, Debra, who also happens to be a nurse on our Hospice team. She had had a monthly meeting there at the facility earlier in the day and stuck around in order to spend some time with us. On her free time.
As we hovered around Mom in her bed, the afternoon nurse was in and out, filling us in on some of the last few hours with Mom as well as questioning us more about Mom and her life. As Dad, Debra and I were happily opining on Mom and her many life achievements and accolades (cutting each other off with each new memory of wonderfulness), the team chaplain, Lissa, swung by and joined the crowd. Mom continued to lay there, half doped-up, half ravaged by her disease, her eyes closed but dancing in her sockets, grabbing at as many of the words and trails as she could.
One by one, the crowd gracefully thinned, and again, it was just me and Dad left in the room with Mom. When Mom called for me and expressed she needed to pee, I paged a nurse. We began to move Mom in order to rise her towards the portable commode, but she began to moan in pain, so we let her rest some more. More time went by, then she expressed she really needed to pee. I paged for help again.
A different woman came this time, and we realized we needed the bed pan. With more effort, the nurse and I rolled and shifted Mom onto the bed pan. But she couldn't pee. We tried different methods, we waited, but nothing happened. I asked this nurse if this was common, and she said yes, that sometimes it's hard to get used to. With no luck, we got her comfortable again, and she dozed off, sort of. Then it was time for Dad and me to go. She did not make much of a fuss when we said goodbye. I had told her earlier we would be back on Saturday, with the siblings and a small birthday celebration.
On our way out, we ran into the doctor. He stopped us and told us that Mom has had two calm nights of sleep. She only made a fuss the first afternoon after we left, which was quickly resolved, and then this morning, when she complained of pain. That's when they gave her the small dose of Morphine. She's only been on the 1 mg. of the anti-psychotic drug, Haldol. He said she is not eating much. I said you have to coax her to eat. He stressed that they were.
Then he summed it up. He said "it doesn't look good."
He thought maybe Mom was hovering around stage 6c or 6d of the disease.
I called my sister and sister in law when I got home. My sister, older brother and nephew will come up tomorrow night, and we will go visit Mom on Saturday. My younger brother and sister in law will come up Saturday night, and go visit Mom alone on Sunday. I might go up tomorrow alone, because I wonder how much time is left. And maybe I could read to her a little bit more.
Wednesday, May 4, 2011
Brief Phone Call
Called the facility and spoke with Mom for about one minute at five tonight. She sounded a bit whipped and weak, but she knew who I was, and I was able to tell her I was thinking of her and I loved her. Dad has changed his mind and he and I will head up tomorrow morning to visit, and so I was also able to tell her that as well. While we are there, we may also have a chance to meet with a social worker, the chaplain and perhaps the doctor.
Then the plan is to visit again at least by Saturday, with the rest of the siblings, in laws, and my nephew. They were all planning on coming up for the weekend anyway to celebrate her birthday (May 10, age 79) and Mother's Day. We'll play it real cool and try and visit with her in shifts.
I am hoping to get up there about every other day, at least for the first week or so.
Then the plan is to visit again at least by Saturday, with the rest of the siblings, in laws, and my nephew. They were all planning on coming up for the weekend anyway to celebrate her birthday (May 10, age 79) and Mother's Day. We'll play it real cool and try and visit with her in shifts.
I am hoping to get up there about every other day, at least for the first week or so.
Friday, April 29, 2011
Dreams And Reality
Wednesday night Mom's disease took a strong hold on her and she was a "terror" all night. Dad had to give her a "calming pill" (Ativan) at quarter to seven. Then she had her usual Ativan with her bedtime pills at bedtime at eight. She was sleeping when Dad retired at nine forty-five, then she began to stir and moan, so he gave her a .5 mg. Haloperidol. About an hour and a half later, she was agitated again, so he gave her a third Ativan. Finally she settled into sleep.
Which made for a very groggy, sleepy lady all day yesterday. By the time I arrived, she had risen, taken her pills with some juice, had a small b.m., and was working on a banana. She ate two pieces of the hard boiled egg Dad had prepared for her, then it was to the couch for a long morning slumber.
When the HH aid, Michelle, came around eleven, Mom pulled out of her groggy sleep enough for a little sponge bath and cleaning up, and she even spoke pleasantly with the aide and smiled a little, too. Then, it was back to the couch. At lunch time, Dad snapped her out of her sleep for a second with a slice of bacon.
Later, she began to stir, and I was able to get her up a couple of times for some wobbly walks around. When Nurse Corrin arrived at about three-fifteen, Mom stayed fairly alert for a while in the chair, answering questions and listening to us discuss the last twenty-four hours. She had eaten a couple of crackers with peanut butter and a scone and a couple of glasses of Ensure just before Nurse C. arrived.
At one point, Mom broke into our discussion and wanted to share a dream she remembered from the bad night before. Corrin encouraged her to tell us about it, and asked if there was anyone she knew who appeared in the dream. Mom described something like this: that a whole bunch of people came to the house, mostly strangers, or "types," and Mom was stressed because she was supposed to run a lecture or a panel of sorts. When asked, there was only one person she recognized in the dream, and that was the minister who's memorial service Dad had attended last Saturday. Mom had known him, too. Corrin asked what Dad could do to make her feel better when she awoke from a scary dream like that. Mom's reply? "He could help me line up the chairs."
Dad realized that he should try harder to make Mom feel more secure if she wakes up from a scary or stressful dream like that.
We've been encouraged to continue keeping notes and writing down anything significant (or not) so that perhaps we can find patterns that trigger the agitation days and nights. I left a little after four in the afternoon, with Mom calm, and told Dad to promise to call later in the evening if Mom was too much and I would come over and stay the night. But he never called, and this morning he sent out the email report that she slept like "a baby" all through the night.
Today, some of her gal pals are visiting at ten, and Dad is leaving at ten fifteen for a day down in the city. I'm heading over soon. At least the sun is shining, and it's Friday, and tomorrow we have extra help with the arrival of my sister for an over night visit.
Poor Mom. It's amazing to see how she snaps in and out of her "real" self and the personality created by her damaged brain.
Which made for a very groggy, sleepy lady all day yesterday. By the time I arrived, she had risen, taken her pills with some juice, had a small b.m., and was working on a banana. She ate two pieces of the hard boiled egg Dad had prepared for her, then it was to the couch for a long morning slumber.
When the HH aid, Michelle, came around eleven, Mom pulled out of her groggy sleep enough for a little sponge bath and cleaning up, and she even spoke pleasantly with the aide and smiled a little, too. Then, it was back to the couch. At lunch time, Dad snapped her out of her sleep for a second with a slice of bacon.
Later, she began to stir, and I was able to get her up a couple of times for some wobbly walks around. When Nurse Corrin arrived at about three-fifteen, Mom stayed fairly alert for a while in the chair, answering questions and listening to us discuss the last twenty-four hours. She had eaten a couple of crackers with peanut butter and a scone and a couple of glasses of Ensure just before Nurse C. arrived.
At one point, Mom broke into our discussion and wanted to share a dream she remembered from the bad night before. Corrin encouraged her to tell us about it, and asked if there was anyone she knew who appeared in the dream. Mom described something like this: that a whole bunch of people came to the house, mostly strangers, or "types," and Mom was stressed because she was supposed to run a lecture or a panel of sorts. When asked, there was only one person she recognized in the dream, and that was the minister who's memorial service Dad had attended last Saturday. Mom had known him, too. Corrin asked what Dad could do to make her feel better when she awoke from a scary dream like that. Mom's reply? "He could help me line up the chairs."
Dad realized that he should try harder to make Mom feel more secure if she wakes up from a scary or stressful dream like that.
We've been encouraged to continue keeping notes and writing down anything significant (or not) so that perhaps we can find patterns that trigger the agitation days and nights. I left a little after four in the afternoon, with Mom calm, and told Dad to promise to call later in the evening if Mom was too much and I would come over and stay the night. But he never called, and this morning he sent out the email report that she slept like "a baby" all through the night.
Today, some of her gal pals are visiting at ten, and Dad is leaving at ten fifteen for a day down in the city. I'm heading over soon. At least the sun is shining, and it's Friday, and tomorrow we have extra help with the arrival of my sister for an over night visit.
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| April 29, 2011 |
Poor Mom. It's amazing to see how she snaps in and out of her "real" self and the personality created by her damaged brain.
Monday, April 25, 2011
The Calm And Winding Road
Well, as of right now, Mom has been calm all day. The last three nights, there has not been any dramatic over night episodes.. it appears that she is very comfortable with the hospital bed with the special gel mattress. She has been sleeping a lot during the days, too.
Dad and I both got some respite with the arrival of my brother and my S.I.L. on Saturday at noon. He was able to attend a memorial service in the afternoon, and I was able to take my weekly walk with my neighbor as well as have extra time to prepare for my gig that night. They left Sunday morning, and I stayed with Mom until Dad got home from church, around one forty-five, and then I went home for a couple of hours.
A little after four, my S.O. and I walked over with a basket of dinner fixings, and by five we four were seated at the festively decorated dinning room table and indulged in an Easter Sunday dinner of lamb, mashed potatoes and asparagus, with a little salad. Mom ate fairly well, really enjoyed the lamb (always has been one of her favorites), then began to get antsy as we finished our plates. We managed to convince her to stay with the mention of dessert (a simple lemon cake with fresh strawberries slices), which I quickly served to her and kept her at the table for another five minutes or so. After that, I settled her back onto the couch, and, with Dad dozing off in the chair and the television quietly on, I cleaned up the dishes and the kitchen and left by six.
This morning Nurse Corrin arrived at nine, and she examined Mom right in the bed. Though her vitals were all good, Dad expressed concern about how much Mom is sleeping, and Corrin reminded us that this is part of the progression of the disease. She explained that right now, she is sleeping a lot, only perking up a little at some parts of the day (the afternoons, in our case), but that she may snap out of this phase and begin to be awake more again, too. Of course, there is no telling how things will shift, but I mentioned to Dad later that at least it's not as exhausting on us at the moment. It is much easier with her sleeping a lot, and if it doesn't effect her night time sleeping, which it hasn't in the last three nights, let's not stress about it.
I left today at around two in the afternoon, after having sat with Mom while Dad did some errands down town. In that time, I read two more chapters from "Little Women" to her, got her properly dressed, gave her some more Ensure, and did a load of laundry. When Dad came home, she got up and had a little tiny bit of soup, then it was back to the couch. I cleaned up the dishes and came home.
Just a few minutes ago, Dad called me to say that Mom wanted to go out for a little drive in the car. I just saw them go by.... I had a little flash back to all the times in the past when they were always busy, running off to engagements and parties and dinners and concerts, leaving me free not to worry.
Well, just now, I heard the car beep. They've been "on the road" for about twenty minutes, now they are back home. I guess I'll head back over now and see how bumpy the road towards "crazy hour" is today.
Dad and I both got some respite with the arrival of my brother and my S.I.L. on Saturday at noon. He was able to attend a memorial service in the afternoon, and I was able to take my weekly walk with my neighbor as well as have extra time to prepare for my gig that night. They left Sunday morning, and I stayed with Mom until Dad got home from church, around one forty-five, and then I went home for a couple of hours.
A little after four, my S.O. and I walked over with a basket of dinner fixings, and by five we four were seated at the festively decorated dinning room table and indulged in an Easter Sunday dinner of lamb, mashed potatoes and asparagus, with a little salad. Mom ate fairly well, really enjoyed the lamb (always has been one of her favorites), then began to get antsy as we finished our plates. We managed to convince her to stay with the mention of dessert (a simple lemon cake with fresh strawberries slices), which I quickly served to her and kept her at the table for another five minutes or so. After that, I settled her back onto the couch, and, with Dad dozing off in the chair and the television quietly on, I cleaned up the dishes and the kitchen and left by six.
This morning Nurse Corrin arrived at nine, and she examined Mom right in the bed. Though her vitals were all good, Dad expressed concern about how much Mom is sleeping, and Corrin reminded us that this is part of the progression of the disease. She explained that right now, she is sleeping a lot, only perking up a little at some parts of the day (the afternoons, in our case), but that she may snap out of this phase and begin to be awake more again, too. Of course, there is no telling how things will shift, but I mentioned to Dad later that at least it's not as exhausting on us at the moment. It is much easier with her sleeping a lot, and if it doesn't effect her night time sleeping, which it hasn't in the last three nights, let's not stress about it.
I left today at around two in the afternoon, after having sat with Mom while Dad did some errands down town. In that time, I read two more chapters from "Little Women" to her, got her properly dressed, gave her some more Ensure, and did a load of laundry. When Dad came home, she got up and had a little tiny bit of soup, then it was back to the couch. I cleaned up the dishes and came home.
Just a few minutes ago, Dad called me to say that Mom wanted to go out for a little drive in the car. I just saw them go by.... I had a little flash back to all the times in the past when they were always busy, running off to engagements and parties and dinners and concerts, leaving me free not to worry.
Well, just now, I heard the car beep. They've been "on the road" for about twenty minutes, now they are back home. I guess I'll head back over now and see how bumpy the road towards "crazy hour" is today.
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, March 18, 2011
Better Today
Mom was better today.. Turns out, Dad informed me this morning, that she ended up sleeping on one of the couches in the living room all night. She called for him at six-thirty in the morning, and he helped her into their bed then, where she slept some more until about nine-thirty, I think.
When I got there, she was dozing in her chair, having just had her juice, pills, Ensure, and a banana half, and later, I helped her eat an entire hard boiled egg and drink a glass of orange juice. We were expecting visitors today, but everyone showed up later than expected and our nurse M. ended up rescheduling for Monday. I took off the bandage on her ankle with the pressure wound and let it air for a few hours, then when the P.T. Brian arrived, I applied a simple band aid, her socks and sneakers, and we three went outside for three loops up and down the driveway in the windy but warm late winter air. Then we sat her down on one of the chairs on the front porch in the sunshine, and Brian had her do some leg exercises. After a good half an hour in the sunshine, we went back in, and he had Mom show him how she used the bed bar. Then he let her rest, promising to call next week.
After another forty-five minutes -and by this time, Mom and Dad had already eaten their "dinner" lunch of salmon, rice and green beans - the home health aid Linda showed up and gave Mom a light sponge bath, moisturizer and a fresh shirt. It was a short visit as Mom was tired from her "work out," and we let her settle back down, up right, on the couch with her feet up. Dad had retired to the basement for awhile, and I read aloud from the Cuban travels book.
Four o'clock came, and Dad took his pills and we gave Mom her Haloperidol pill. She was less confused today, and even asked us if it was just the one pill she was to swallow. One more bathroom break later, I settled her back up right onto the couch and went home.
On my walk back, I saw my brother's car at the top of our driveway. He's up skiing with friends and is staying over night with us. He zipped over to spend some time with Mom, and I think it's good for everyone to have more visitors, as tired as Dad is these days.
When I got there, she was dozing in her chair, having just had her juice, pills, Ensure, and a banana half, and later, I helped her eat an entire hard boiled egg and drink a glass of orange juice. We were expecting visitors today, but everyone showed up later than expected and our nurse M. ended up rescheduling for Monday. I took off the bandage on her ankle with the pressure wound and let it air for a few hours, then when the P.T. Brian arrived, I applied a simple band aid, her socks and sneakers, and we three went outside for three loops up and down the driveway in the windy but warm late winter air. Then we sat her down on one of the chairs on the front porch in the sunshine, and Brian had her do some leg exercises. After a good half an hour in the sunshine, we went back in, and he had Mom show him how she used the bed bar. Then he let her rest, promising to call next week.
After another forty-five minutes -and by this time, Mom and Dad had already eaten their "dinner" lunch of salmon, rice and green beans - the home health aid Linda showed up and gave Mom a light sponge bath, moisturizer and a fresh shirt. It was a short visit as Mom was tired from her "work out," and we let her settle back down, up right, on the couch with her feet up. Dad had retired to the basement for awhile, and I read aloud from the Cuban travels book.
Four o'clock came, and Dad took his pills and we gave Mom her Haloperidol pill. She was less confused today, and even asked us if it was just the one pill she was to swallow. One more bathroom break later, I settled her back up right onto the couch and went home.
On my walk back, I saw my brother's car at the top of our driveway. He's up skiing with friends and is staying over night with us. He zipped over to spend some time with Mom, and I think it's good for everyone to have more visitors, as tired as Dad is these days.
Monday, March 14, 2011
Busy Weekend And A Mix Up
Okay, so I don't remember much about Friday, so it must have been fairly normal. I had a gig that night, so I left shortly after Dad returned home from his doctor's appointment and food shopping.
Saturday, my brother and my sister in law arrived around three in the afternoon, bearing gifts and wine and foods. About five, my sister arrived, and she brought fixings for an entire birthday dinner. We were celebrating my birthday (last Monday) and my sister in laws birthday, which is on the sixteenth. They all prepared some appetizers and the fantastic meal, and Mom had a lovely time. She ate well, enjoyed her glass of Riesling wine with ice cubes, and even giggled some, here and there. We ate cake and opened presents, then four of us retreated back to my house. My sister stayed over night at Mom and Dad's, and my brother and sister in law slept over at our house.
Sunday morning, brother and sister in law left early, while my older sister stayed until two in the afternoon. Dad left for church a little after nine, and I checked in next door around noon. All was calm - Mom was mostly dozing on the couch - and we were expecting a friend from church to arrive by one to stay with Mom so that Dad could attend a meeting after church. Before I left, I remembered that Mom was due for a dosage of her Halperidol at two, so I showed my sister where the pills were and she left them out so she wouldn't forget. What I forgot to do was to tell her to leave Dad a note stating that she had given Mom the pill.
This morning, Monday, I got over there by nine thirty so that Dad could run his car down to the mechanics place for an oil change, and then go down town to run some errands. When I got there, he told me that Mom was really lethargic this morning, and only ate half of a banana along with her pills and juice. When I looked at her, she did look groggy, and also pale. He left, I got Mom up and had her help me make their bed. I had her drink a whole glass of orange juice, then I settled her back down to the couch, swept up the kitchen floor and did their breakfast dishes.
When Dad got back, we discussed the weekend and the coming week a little more, and then I brought up with him if he thought we might be able to get away with giving her the Haloperidol pill at four every afternoon, so that it would be easier to remember, as he takes his pills every day at four. He agreed, and then began to tell me that he didn't give her that pill until three thirty in the afternoon on Sunday.
"Wait a minute," I interrupted him. "You gave her a pill on Sunday, too? SHIT! I had my sister give her one at two in the afternoon! I forgot to tell her to leave a note for you! Damn it!"
Needless to say, we understood now why Mom was extra groggy and pale today. She had also complained about feeling "sore all over" and that she couldn't understand why. Trying hard not to feel too guilty about this miscommunication, Dad and I agreed to give her extra slack for today, and also to skip her dose this afternoon. When the home health worker, Linda, showed up just as I was making them up a lunch/dinner, we told her about the mix up, and she advised to get a notebook to keep better track of things. Naturally, our main case worker, Nurse M., had advised us of that, as well, but we let that slip. Today, I brought one over from my house, so we will now keep better track of things.
Mom did get up, though, sit at the table, and ate a good amount of her meal. Then she agreed to let Linda freshen her up with just a little sponge bath and some other pampering. After that, we settled her back down onto the couch, Linda left, and we waited for our visit from Nurse M., who had called to say she would be a little bit late. I waited around for awhile, but then decided to leave, so I could get home to shower and go food shopping and other errands.
When I got back around four, Dad told me that Nurse M. said we could just skip the Haloperidol today, and that we could probably start back up on it tomorrow, if we thought Mom would need it. She seemed to think it wasn't too big of a deal. Phew~!
Mom got a little anxious around four thirty, wanting to start dinner, but when we said it was still a bit too early, she said she just wanted to take a nap then. No problem, Dad and I said, and settled her back into the couch and turned the Oprah show on quietly in the background. Dad and I discussed plans for the next few days, as well as plans for a meal tonight, and then I left. I'll head back over in the morning so that Dad can go back to the hospital for some blood work.
Saturday, my brother and my sister in law arrived around three in the afternoon, bearing gifts and wine and foods. About five, my sister arrived, and she brought fixings for an entire birthday dinner. We were celebrating my birthday (last Monday) and my sister in laws birthday, which is on the sixteenth. They all prepared some appetizers and the fantastic meal, and Mom had a lovely time. She ate well, enjoyed her glass of Riesling wine with ice cubes, and even giggled some, here and there. We ate cake and opened presents, then four of us retreated back to my house. My sister stayed over night at Mom and Dad's, and my brother and sister in law slept over at our house.
Sunday morning, brother and sister in law left early, while my older sister stayed until two in the afternoon. Dad left for church a little after nine, and I checked in next door around noon. All was calm - Mom was mostly dozing on the couch - and we were expecting a friend from church to arrive by one to stay with Mom so that Dad could attend a meeting after church. Before I left, I remembered that Mom was due for a dosage of her Halperidol at two, so I showed my sister where the pills were and she left them out so she wouldn't forget. What I forgot to do was to tell her to leave Dad a note stating that she had given Mom the pill.
This morning, Monday, I got over there by nine thirty so that Dad could run his car down to the mechanics place for an oil change, and then go down town to run some errands. When I got there, he told me that Mom was really lethargic this morning, and only ate half of a banana along with her pills and juice. When I looked at her, she did look groggy, and also pale. He left, I got Mom up and had her help me make their bed. I had her drink a whole glass of orange juice, then I settled her back down to the couch, swept up the kitchen floor and did their breakfast dishes.
When Dad got back, we discussed the weekend and the coming week a little more, and then I brought up with him if he thought we might be able to get away with giving her the Haloperidol pill at four every afternoon, so that it would be easier to remember, as he takes his pills every day at four. He agreed, and then began to tell me that he didn't give her that pill until three thirty in the afternoon on Sunday.
"Wait a minute," I interrupted him. "You gave her a pill on Sunday, too? SHIT! I had my sister give her one at two in the afternoon! I forgot to tell her to leave a note for you! Damn it!"
Needless to say, we understood now why Mom was extra groggy and pale today. She had also complained about feeling "sore all over" and that she couldn't understand why. Trying hard not to feel too guilty about this miscommunication, Dad and I agreed to give her extra slack for today, and also to skip her dose this afternoon. When the home health worker, Linda, showed up just as I was making them up a lunch/dinner, we told her about the mix up, and she advised to get a notebook to keep better track of things. Naturally, our main case worker, Nurse M., had advised us of that, as well, but we let that slip. Today, I brought one over from my house, so we will now keep better track of things.
Mom did get up, though, sit at the table, and ate a good amount of her meal. Then she agreed to let Linda freshen her up with just a little sponge bath and some other pampering. After that, we settled her back down onto the couch, Linda left, and we waited for our visit from Nurse M., who had called to say she would be a little bit late. I waited around for awhile, but then decided to leave, so I could get home to shower and go food shopping and other errands.
When I got back around four, Dad told me that Nurse M. said we could just skip the Haloperidol today, and that we could probably start back up on it tomorrow, if we thought Mom would need it. She seemed to think it wasn't too big of a deal. Phew~!
Mom got a little anxious around four thirty, wanting to start dinner, but when we said it was still a bit too early, she said she just wanted to take a nap then. No problem, Dad and I said, and settled her back into the couch and turned the Oprah show on quietly in the background. Dad and I discussed plans for the next few days, as well as plans for a meal tonight, and then I left. I'll head back over in the morning so that Dad can go back to the hospital for some blood work.
Wednesday, March 9, 2011
The Last Few Days
Just a quick recap for the record.. what I can remember, that is.
I didn't spend a lot of time with Mom on Saturday, as brother was up. He stayed with Mom for awhile so that Dad and I could both go out and run errands during the same time.. a rarity. Naturally, we ran into each other at the market, anyway! This day, too, we started her back up again on correct .5 mg dosage of Haloperidol.
Sunday morning, brother got over there early so Dad could go to church. I was able to have some free time in the morning, then went over and hung with both of them for a couple of hours. Mom was still fussy with food and wanting to sleep a lot.
Monday was my birthday. I visited around eleven-thirty. Mom was okay, a little bit perkier than a week ago, although still fussy about foods. She's also taken to lashing out (verbally) at Dad, very impatient and short with whatever he says. Monday morning, a home health woman came by, Jackie, and gave Mom a sponge bath, washed her hair, and brushed her teeth. I hung around while Dad ran errands that afternoon, and Mom and I did a little reading from a book of travel essays about Cuba. I left around four in the afternoon.
Tuesday got over just before noon. Dad said that Mom was very sleepy the night before, but not too bad behavioral wise. That morning though, he expressed frustration with her "being ornery." It's mostly about her lack of appetite that makes him annoyed, I think. He also mentioned that she had had an "accident," but we think it was just from lack of getting to the bathroom on time, versus incontinence. He cleaned her up and she continued on on the john with a regular bowel movement. She didn't seem too upset by the event.
Nurse M. showed up a little after noon, shortly after Mom nibbled on a couple of pieces of toast and grapes. Nurse M. immediately recognized that Mom appeared to exhibit less anxiety with her arrival, noting Mom's brighter eyes and smile. Though Mom still expressed confusion about Nurse M.'s name, as well as "what road do we live on," she really was less anxious. Her restlessness at the consultation was notably less, I thought, too. Halfway through their meeting, Dad told me he was tired and went downstairs to grab a little nap. Nurse M. checked Mom's ankle and her vitals, after interviewing about the medications and reactions. We decided to maintain the level of the Haloperidol for at the very least a few more days. After next week, Nurse M. will visit less often for a week.
I read more from the Cuba essays to Mom, and encouraged her to drink and eat a little more. Dad came up from his nap and went out to run errands. When he came home, after settling in, he came and sat on the couch and Mom laid her head in his lap. She does seem to get more sleepy in the afternoon, probably because of the drug, but her confusion about where she is seems to be a little bit less.. or, at least, she's bringing the subject up less.
Today, Wednesday March ninth, Maria comes to work with Mom at ten. Dad and I decided that I will got to the monthly Alzheimer's support group at one, down at our local community center. Tonight, Dad has a board meeting, so I will stay with Mom until he comes home. More snow coming later tonight, unfortunately, but switching over to rain by Thursday night.
****
Okay, just got a phone call from Dad now, a little before ten. He was worried because Mom was very groggy this morning and out of it, and she was very wobbly when she first got out of bed. She did eat most of her breakfast, but then had a loose stool, which he had to help clean up. He said she fell back asleep in her chair after all that. I asked if she was drooling or speaking softly, but he didn't think so. I told him to call Nurse M. about all this.
Damn drugs and their damn side effects.
I didn't spend a lot of time with Mom on Saturday, as brother was up. He stayed with Mom for awhile so that Dad and I could both go out and run errands during the same time.. a rarity. Naturally, we ran into each other at the market, anyway! This day, too, we started her back up again on correct .5 mg dosage of Haloperidol.
Sunday morning, brother got over there early so Dad could go to church. I was able to have some free time in the morning, then went over and hung with both of them for a couple of hours. Mom was still fussy with food and wanting to sleep a lot.
Monday was my birthday. I visited around eleven-thirty. Mom was okay, a little bit perkier than a week ago, although still fussy about foods. She's also taken to lashing out (verbally) at Dad, very impatient and short with whatever he says. Monday morning, a home health woman came by, Jackie, and gave Mom a sponge bath, washed her hair, and brushed her teeth. I hung around while Dad ran errands that afternoon, and Mom and I did a little reading from a book of travel essays about Cuba. I left around four in the afternoon.
Tuesday got over just before noon. Dad said that Mom was very sleepy the night before, but not too bad behavioral wise. That morning though, he expressed frustration with her "being ornery." It's mostly about her lack of appetite that makes him annoyed, I think. He also mentioned that she had had an "accident," but we think it was just from lack of getting to the bathroom on time, versus incontinence. He cleaned her up and she continued on on the john with a regular bowel movement. She didn't seem too upset by the event.
Nurse M. showed up a little after noon, shortly after Mom nibbled on a couple of pieces of toast and grapes. Nurse M. immediately recognized that Mom appeared to exhibit less anxiety with her arrival, noting Mom's brighter eyes and smile. Though Mom still expressed confusion about Nurse M.'s name, as well as "what road do we live on," she really was less anxious. Her restlessness at the consultation was notably less, I thought, too. Halfway through their meeting, Dad told me he was tired and went downstairs to grab a little nap. Nurse M. checked Mom's ankle and her vitals, after interviewing about the medications and reactions. We decided to maintain the level of the Haloperidol for at the very least a few more days. After next week, Nurse M. will visit less often for a week.
I read more from the Cuba essays to Mom, and encouraged her to drink and eat a little more. Dad came up from his nap and went out to run errands. When he came home, after settling in, he came and sat on the couch and Mom laid her head in his lap. She does seem to get more sleepy in the afternoon, probably because of the drug, but her confusion about where she is seems to be a little bit less.. or, at least, she's bringing the subject up less.
Today, Wednesday March ninth, Maria comes to work with Mom at ten. Dad and I decided that I will got to the monthly Alzheimer's support group at one, down at our local community center. Tonight, Dad has a board meeting, so I will stay with Mom until he comes home. More snow coming later tonight, unfortunately, but switching over to rain by Thursday night.
****
Okay, just got a phone call from Dad now, a little before ten. He was worried because Mom was very groggy this morning and out of it, and she was very wobbly when she first got out of bed. She did eat most of her breakfast, but then had a loose stool, which he had to help clean up. He said she fell back asleep in her chair after all that. I asked if she was drooling or speaking softly, but he didn't think so. I told him to call Nurse M. about all this.
Damn drugs and their damn side effects.
Friday, March 4, 2011
How Lucky We Are
I got over there close to eleven in the morning today, and Mom greeted me loudly from her chair. "Hi Kate!"
She had eaten a little for breakfast, and we had a big day planned. Three visits from the hospice agency.
I started to read an article to her from an older issue of the New Yorker about the writer George Elliot, and towards the end, we received our first visit from our primary case worker, Nurse M. around twelve fifteen, shortly after Mom ate a few bites of toast with bacon slices on it that Dad had prepared for her. Nurse M. checked her ankle. Both issues were looking better (a rash on the front part of her leg just above the ankle bone, and a bed sore on her ankle bone.) She checked her vitals (BP good, pulse good) and checked her temperature (normal.) She asked a few questions, while Mom wandered from couch to chair to walking about, and then she left, saying she'd call on Monday morning to set up another visit for that day. She also called Mom's primary doctor, Dr. N., to inquire about when it would be okay to start up on the Haloperidol drug. The doctor's assistant did call back later in the afternoon to say that the doctor thought it would be okay to start her up on that Saturday at two in the afternoon.
We had about half an hour or more before our next visit. I settled Mom down again on the couch, and I finished up the George Elliot article, and soon enough, our next professional walked in the door, the physical therapist, Brian, a seasoned, young man with a wonderful and warm bedside manner. He got right down to business with Mom, evaluating her mobility and the space she lives in. Mom became quite animated with Brian, and he was very charming and understanding with her busy bee like urges. When she proclaimed that all she wanted to do was lie in her bed and go to sleep, he told her that that was fine, and followed her to the bedroom and observed how she got in the bed. Then he showed her (and Dad and me) a few exercises, testing her strength in her legs. She did quite well, and seemed to respond favorably to his inquiries. He also recommended we look into purchasing a handle for her side of the bed, which we could purchase on line. It's a rail we can easily add to the bed to aid in her mobility in getting in and out of bed. He was great, and will come back a week from today.
We had another period of respite, where Mom retreated back to the couch and I read aloud to her some more from New Yorker magazines. Finally, our third visitor arrived, a home health aide named Jackie, and she was all business and was ready to give Mom a sponge bath. Mom protested quite a bit, but eventually, she subsided and did quite well. I wasn't one hundred percent thrilled with Jackie, but, she was professional and very nice. Mom, again, was very animated with her and mentioned that she looked familiar to her. Mom got sponge bathed, a new shirt and panties (well, adult diapers), and a little more "get to know each other" conversation, and then Jackie left.
Dad had left to run some errands shortly after Jackie showed up, and after Jackie left, I let Mom settle back into the couch for a well deserved rest. I read aloud a short article from the New Yorker to her, a recount of a man's time spent in a private school in Wales when he was stealing books from the library, and when I finished, I saw that Mom was sleeping, so I just sat there reading alone and let her rest.
Finally, Dad came back with fresh groceries and pills. Mom and I put away the food, Dad took his pills and retrieved wood from the woodpile for tonight's fire in the wood stove, changed his shoes, and then I insisted that he sit with her quietly for awhile on the couch. Then, I was able to leave. I got home a little after four-thirty. A long day for me, and it's not over yet. Phone calls and band business, dinner and visit from my brother, who is coming up tonight out of the kindness and compassion in his heart for his mother. Sister wanted to come up, too, but was too pressured with work obligations, but we'll be just fine. It's probably for the better this weekend anyway. Mom has really been expressing massive confusion the last few days about where she is, where she's from and where she's going. Also, who lives there, where I live, where my siblings live.
Despite all that, she is much more mobile and verbal, and their are small moments of clarity and understanding for her. The only really, really sad part for me today was when at one point, just she and I alone, she asked me, "Am I going to be this way for the rest of my life?"
How could I answer that question? I decided to just go with the truth, counting on her short-term memory to erase my answer. "Sadly, Mom, yes, you will be."
After a long pause, I added, "But that doesn't take away how much we love and care about each other, and how lucky we are to have that."
"Yes," she replied.
She had eaten a little for breakfast, and we had a big day planned. Three visits from the hospice agency.
I started to read an article to her from an older issue of the New Yorker about the writer George Elliot, and towards the end, we received our first visit from our primary case worker, Nurse M. around twelve fifteen, shortly after Mom ate a few bites of toast with bacon slices on it that Dad had prepared for her. Nurse M. checked her ankle. Both issues were looking better (a rash on the front part of her leg just above the ankle bone, and a bed sore on her ankle bone.) She checked her vitals (BP good, pulse good) and checked her temperature (normal.) She asked a few questions, while Mom wandered from couch to chair to walking about, and then she left, saying she'd call on Monday morning to set up another visit for that day. She also called Mom's primary doctor, Dr. N., to inquire about when it would be okay to start up on the Haloperidol drug. The doctor's assistant did call back later in the afternoon to say that the doctor thought it would be okay to start her up on that Saturday at two in the afternoon.
We had about half an hour or more before our next visit. I settled Mom down again on the couch, and I finished up the George Elliot article, and soon enough, our next professional walked in the door, the physical therapist, Brian, a seasoned, young man with a wonderful and warm bedside manner. He got right down to business with Mom, evaluating her mobility and the space she lives in. Mom became quite animated with Brian, and he was very charming and understanding with her busy bee like urges. When she proclaimed that all she wanted to do was lie in her bed and go to sleep, he told her that that was fine, and followed her to the bedroom and observed how she got in the bed. Then he showed her (and Dad and me) a few exercises, testing her strength in her legs. She did quite well, and seemed to respond favorably to his inquiries. He also recommended we look into purchasing a handle for her side of the bed, which we could purchase on line. It's a rail we can easily add to the bed to aid in her mobility in getting in and out of bed. He was great, and will come back a week from today.
We had another period of respite, where Mom retreated back to the couch and I read aloud to her some more from New Yorker magazines. Finally, our third visitor arrived, a home health aide named Jackie, and she was all business and was ready to give Mom a sponge bath. Mom protested quite a bit, but eventually, she subsided and did quite well. I wasn't one hundred percent thrilled with Jackie, but, she was professional and very nice. Mom, again, was very animated with her and mentioned that she looked familiar to her. Mom got sponge bathed, a new shirt and panties (well, adult diapers), and a little more "get to know each other" conversation, and then Jackie left.
Dad had left to run some errands shortly after Jackie showed up, and after Jackie left, I let Mom settle back into the couch for a well deserved rest. I read aloud a short article from the New Yorker to her, a recount of a man's time spent in a private school in Wales when he was stealing books from the library, and when I finished, I saw that Mom was sleeping, so I just sat there reading alone and let her rest.
Finally, Dad came back with fresh groceries and pills. Mom and I put away the food, Dad took his pills and retrieved wood from the woodpile for tonight's fire in the wood stove, changed his shoes, and then I insisted that he sit with her quietly for awhile on the couch. Then, I was able to leave. I got home a little after four-thirty. A long day for me, and it's not over yet. Phone calls and band business, dinner and visit from my brother, who is coming up tonight out of the kindness and compassion in his heart for his mother. Sister wanted to come up, too, but was too pressured with work obligations, but we'll be just fine. It's probably for the better this weekend anyway. Mom has really been expressing massive confusion the last few days about where she is, where she's from and where she's going. Also, who lives there, where I live, where my siblings live.
Despite all that, she is much more mobile and verbal, and their are small moments of clarity and understanding for her. The only really, really sad part for me today was when at one point, just she and I alone, she asked me, "Am I going to be this way for the rest of my life?"
How could I answer that question? I decided to just go with the truth, counting on her short-term memory to erase my answer. "Sadly, Mom, yes, you will be."
After a long pause, I added, "But that doesn't take away how much we love and care about each other, and how lucky we are to have that."
"Yes," she replied.
Saturday, February 26, 2011
Snowy Friday
I trudged back through the falling snow after I had some lunch, arriving back over around twelve thirty. Dad still hadn't had lunch yet, so I put on some of the chicken soup I had made and brought over for him. For Mom, I took a cup of the soup and put it in the blender and pureed it. Then I put it in the microwave and heated it up. She did eat about ten or fifteen small teaspoons of the pureed soup.
She was snotty. We worked on that. She went back to dozing. It was fairly quite there, with the snow falling and the wind howling. The phone did not ring like it had all the day before. I picked up a book of essays on the season of winter that I found in her bookshelf. One of the essays, by John Updike, had notes in it. Dad told me she had recited this essay at a church service a few years back. I could see where she had changed some of the words and lines to fit her message. I read the essay aloud to her, Dad listened in, too. Later, I read another essay on winter by a woman named Anne Dillard, I think it was. We got through most of that essay, when towards the end, Mom began to stir, and we knew it was time for the bathroom.
Through out the afternoon, when she did speak, her voice was very soft. Some of the things she said made sense, other things it was hard to know what she meant. The phone did ring one time in the mid afternoon, our neighbor giving Dad an update on things, and she managed to ask about that. This happened while we were slowly walking back from a bathroom break.
Dad and I were both impressed with her walking yesterday. It was stronger, her legs a little straighter. It still took a while to get going - her head is slumped down, her eyes will not rise, but it was less tottering. We were able to let her go for short moments and she was able to stand alone. But not for long. She peed several times, sometimes she was able to wipe herself, other times, not quite. Her confusion sometimes leads her to put the used toilet paper in the basked next to the throne instead of dropping it in the bowl.
She ate a few slices of canned pear in the later afternoon. Drank some more water. Spoke a little here and there, mostly with eyes closed. As I got ready to leave for the evening, around five, I was feeling kind of hopeful that Mom was getting stronger. Dad and I discussed what he could try and give her to eat, and I told him to call with a report later, if he wanted to.
Around six thirty, he did call. I had just sent a little hopeful email out to my siblings (we had all been emailing throughout the day), and was just beginning to relax a little, when he called sounding exasperated. He had tried to give her some food and drink and she was refusing everything. His back was getting sore from sitting in the little stool by her chair, trying to spoon feed her. By the time we hung up again, he had decided to try and give her some ice cream with perhaps, some sliced pears. He didn't ask me to walk back over on in the dark and snow, but after a few minutes, I decided to go back over. Mostly for moral support for Dad, really.
When I got there, he was proud that she did eat some of the ice cream and pear. I greeted her and asked if she would like any of the drink. NO. After a few minutes, we moved her to the couch. After another fifteen minutes, I helped Dad through the ritual of putting her to bed. The long slow walk to the bathroom. Toilet (nothing). Teeth brushing (she still does it herself, somehow.) Four pills (a little confusion, probably because I was there, but she did get them down.) And finally, into bed. The look on her face for those few moments when Dad has to lift her to get her in position, heart wrenching. We left her with kisses and good nights, on her back in her bed, asleep right away.
I said goodnight, walked back out into the dark and snow, and felt numb. When I got home, my partner said, "How was it, grim?"
"Yep. It's grim." I replied, not for the first time.
Today is another day. Siblings appearing at some point. I have to decide if I want to go to play my gig tonight or not - I have a great friend willing to sub for me at last moments notice. Most important, Mom's well being. Food, drink and comfort. Saturday seems like such a long way away from Monday, when we can finally talk to her doctor again. Dad's post on the message board had quite a few good responses by late last night, and now I'm wondering if she does indeed have a urinary tract infection, or some other kind of infection, after all. She probably needs electrolytes.
Our neighbor is pushing snow around in our driveway now. He'll go down and do Dad and Mom's driveway next. The sun is out. It's only nine in the morning. Got a lot more to do today. I'm okay, though.
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.
Monday, January 31, 2011
Respite And Gratitude
It's been a fairly quite week with Mom. The cold and snow has kept us all in, with short trips in and out for supplies or events for Dad and me in between our times with Mom.
The re-introduction of the Namenda drug seems to have helped bring her back to a little bit of a more calm state, though she is still panting during movement and sleeping most of the time. I can't wait until warmer weather so we can start getting her back outside for little walks.. I do worry that she's sitting and laying down too much. Her eating is still finicky and light, but at least she eats dinner fairly well, from what I hear from Dad.
One of the biggest gifts Dad and I have gotten the last few days is some respite. Friday night, the twenty-eighth of January, I had a big and important gig to perform in, and Dad wanted to attend the ninth anniversary of the open mic held at the basement of his church. One of the women at the church offered to come over to their house at six o'clock on that night to sit with Mom for a few hours. Mom was not too happy about the thought of it, but from what I was told, once the woman got there, she had a nice time.
Then on Sunday, my younger brother and my sister-in-law, two very very busy people who live almost three hours away, drove all the way up here and arrived at Mom and Dad's on Sunday morning at ten forty-five in the morning! I was practically in tears at their effort! I was able to leave early and have plenty of morning time to get ready for my gig, and Dad was able to linger after church and do some errands in the early afternoon. My brother and his wife left sometime around four in the afternoon.. unbelievable! So wonderful. This is the kind of team work that makes such a big difference in caring for a person with Alzheimer's Disease.
I am about halfway through reading aloud "Sons And Lovers," and though Mom still has to stop me to ask for clarification on characters and events at times, we are plugging through the story and both enjoying the dense, yet beautiful, writing. She still stops to correct me when I pronounce a word wrong.
I continue to have warm, empathetic support from friends. I was introduced to an old friend of a good friend of mine at the big gig the other night, and when I shared with him this life stage I am going through with my parents, his comments were so uplifting and soul soothing. To paraphrase;
"Enjoy these moments. Yes, she will die, so what? That doesn't take away her spirit in you, the memories you have of her. She will never go away in your heart..."
I whole heartedly agree.
Thank you to my family and friends for your help and understanding. It is reassuring and uplifting and it eases so much of the sad emotional burden that could so easily weigh me down. I am quite sure Dad would concur.
The re-introduction of the Namenda drug seems to have helped bring her back to a little bit of a more calm state, though she is still panting during movement and sleeping most of the time. I can't wait until warmer weather so we can start getting her back outside for little walks.. I do worry that she's sitting and laying down too much. Her eating is still finicky and light, but at least she eats dinner fairly well, from what I hear from Dad.
One of the biggest gifts Dad and I have gotten the last few days is some respite. Friday night, the twenty-eighth of January, I had a big and important gig to perform in, and Dad wanted to attend the ninth anniversary of the open mic held at the basement of his church. One of the women at the church offered to come over to their house at six o'clock on that night to sit with Mom for a few hours. Mom was not too happy about the thought of it, but from what I was told, once the woman got there, she had a nice time.
Then on Sunday, my younger brother and my sister-in-law, two very very busy people who live almost three hours away, drove all the way up here and arrived at Mom and Dad's on Sunday morning at ten forty-five in the morning! I was practically in tears at their effort! I was able to leave early and have plenty of morning time to get ready for my gig, and Dad was able to linger after church and do some errands in the early afternoon. My brother and his wife left sometime around four in the afternoon.. unbelievable! So wonderful. This is the kind of team work that makes such a big difference in caring for a person with Alzheimer's Disease.
I am about halfway through reading aloud "Sons And Lovers," and though Mom still has to stop me to ask for clarification on characters and events at times, we are plugging through the story and both enjoying the dense, yet beautiful, writing. She still stops to correct me when I pronounce a word wrong.
I continue to have warm, empathetic support from friends. I was introduced to an old friend of a good friend of mine at the big gig the other night, and when I shared with him this life stage I am going through with my parents, his comments were so uplifting and soul soothing. To paraphrase;
"Enjoy these moments. Yes, she will die, so what? That doesn't take away her spirit in you, the memories you have of her. She will never go away in your heart..."
I whole heartedly agree.
Thank you to my family and friends for your help and understanding. It is reassuring and uplifting and it eases so much of the sad emotional burden that could so easily weigh me down. I am quite sure Dad would concur.
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?
Wednesday, December 22, 2010
Fingers Crossed
Mom was back to her "usual" self today. I went over early in the day, in order to be there when Maria showed up for Mom's weekly bath. Maria showed up a few minutes after me, with a nice Christmas cheesecake in hand as a gift to Mom and Dad.
After filling Maria in on what had happened last night, Mom and Maria retreated to the bathroom, which left Dad and me some rare time to talk in private. We discussed some of our conclusions and impressions from last night's events, as well as discussed some of my concerns about what would happen if he became incapacitated or dies before Mom. This was when he filled me on having an appointment for tomorrow morning with an attorney to fill out and sign a Financial Power of Attorney contract, one of the three legal things that should be done in this situation. The other two, which I think are "end of life" and "power of attorney"(I think?) are already settled.
Mom will have to go to the lawyer with him tomorrow morning and make a signature in her very shaky handwriting.
After her bath and Maria left, she practically begged me to read to her from "The Secret Garden." As you can imagine, I was a bit nervous about it, but I started back on the chapter I started last night, and she was engaged until I finished, about three or four chapters later. During this time, Dad drove down town to buy a few staples, and when he came back, I ran home and jumped in the Jeep to go down town myself and get a little last minute Christmas shopping done and shop for tonight's dinner. I told Mom what I had to do, and she accepted it, not without a little bit of pouting.
I zipped back over there about three forty in the afternoon, just when "crazy time" sets in (ha ha, really, "sundowners"), and she and Dad were just finishing up a John Wayne movie on TCM. After the movie, she asked me if I would read to her some more, but I said I was too tired and that I wanted to save the book a little longer. She agreed to that, but I could see her begin to get a little bit anxious again. Dad did a few things while I sat with her, and then I explained to her I had to go. She was cool enough. I kept watching her to make sure she didn't fall back into another episode, but thankfully, this did not happen, at least not while I was there. I think she'll be okay for tonight.
Maria gave us the name of a mild sedative we could get prescribed from their doctor, and it is even available in a cream, so I'm very anxious to get that if we can. Because of the holidays, though, it may be tricky to get it right away.. I'd really like to have that on hand for the next intense episode. We could have really used a mild sedative for her last night!
Maria also told us Mom was dehydrated again, and I suspected that might be the case, but after Maria told us a lot of stuff made sense to me. At the ER last night, when they rolled Mom in her bed to the CT room, she complained of feeling dizzy.. a classic symptom of dehydration.
Today, we made her drink a lot of water, and from now on we will remember to be more vigilant about keeping her hydrated. I know it's probably wrong, but I was surely tempted to mildly "threaten" her that she needed to drink the water so she wouldn't have to go back into the hospital... what else can I do?
So, another day done for me. Meanwhile, Dad is ever so patiently handling the rest. Feeding her, amusing her, answering her endless questions, undressing her for bed, giving her her night time pills, tucking her in. It's a lot, and he's doing such an amazing job.
Tomorrow the fun begins. They go to the attorney, my younger brother and his wife arrive for Christmas, and my partner and I have a gig at night. Friday, my sister, brother in law, older brother and nephew arrive, and we will attempt to get Mom and as many of the gang that can stand to go to the Christmas Eve church service at their church. Saturday is Christmas, Sunday they all go home.
Let the fun begin... (fingers crossed.)
After filling Maria in on what had happened last night, Mom and Maria retreated to the bathroom, which left Dad and me some rare time to talk in private. We discussed some of our conclusions and impressions from last night's events, as well as discussed some of my concerns about what would happen if he became incapacitated or dies before Mom. This was when he filled me on having an appointment for tomorrow morning with an attorney to fill out and sign a Financial Power of Attorney contract, one of the three legal things that should be done in this situation. The other two, which I think are "end of life" and "power of attorney"(I think?) are already settled.
Mom will have to go to the lawyer with him tomorrow morning and make a signature in her very shaky handwriting.
After her bath and Maria left, she practically begged me to read to her from "The Secret Garden." As you can imagine, I was a bit nervous about it, but I started back on the chapter I started last night, and she was engaged until I finished, about three or four chapters later. During this time, Dad drove down town to buy a few staples, and when he came back, I ran home and jumped in the Jeep to go down town myself and get a little last minute Christmas shopping done and shop for tonight's dinner. I told Mom what I had to do, and she accepted it, not without a little bit of pouting.
I zipped back over there about three forty in the afternoon, just when "crazy time" sets in (ha ha, really, "sundowners"), and she and Dad were just finishing up a John Wayne movie on TCM. After the movie, she asked me if I would read to her some more, but I said I was too tired and that I wanted to save the book a little longer. She agreed to that, but I could see her begin to get a little bit anxious again. Dad did a few things while I sat with her, and then I explained to her I had to go. She was cool enough. I kept watching her to make sure she didn't fall back into another episode, but thankfully, this did not happen, at least not while I was there. I think she'll be okay for tonight.
Maria gave us the name of a mild sedative we could get prescribed from their doctor, and it is even available in a cream, so I'm very anxious to get that if we can. Because of the holidays, though, it may be tricky to get it right away.. I'd really like to have that on hand for the next intense episode. We could have really used a mild sedative for her last night!
Maria also told us Mom was dehydrated again, and I suspected that might be the case, but after Maria told us a lot of stuff made sense to me. At the ER last night, when they rolled Mom in her bed to the CT room, she complained of feeling dizzy.. a classic symptom of dehydration.
Today, we made her drink a lot of water, and from now on we will remember to be more vigilant about keeping her hydrated. I know it's probably wrong, but I was surely tempted to mildly "threaten" her that she needed to drink the water so she wouldn't have to go back into the hospital... what else can I do?
So, another day done for me. Meanwhile, Dad is ever so patiently handling the rest. Feeding her, amusing her, answering her endless questions, undressing her for bed, giving her her night time pills, tucking her in. It's a lot, and he's doing such an amazing job.
Tomorrow the fun begins. They go to the attorney, my younger brother and his wife arrive for Christmas, and my partner and I have a gig at night. Friday, my sister, brother in law, older brother and nephew arrive, and we will attempt to get Mom and as many of the gang that can stand to go to the Christmas Eve church service at their church. Saturday is Christmas, Sunday they all go home.
Let the fun begin... (fingers crossed.)
Monday, November 29, 2010
Sad Sunday
We got through the Thanksgiving holiday fairly well. Mom was pretty well engaged and despite the usual confusion about time and schedules, I was happy to see her hang back and let the rest of us handle the duties. She ate a good portion of the mid-day meal, and also ate much of the meals my sister prepared for them while she was there. The afternoon gathering over at Mom's sister's house, just down the road, was very active and busy, but Mom was comfortable enough there to have a nice time. She was especially excited when some of us pulled out some instruments and played a few songs.. she had a ball singing along, and it was very special to see that.
Earlier in the week, she had told my sister that she'd like to go to church on Sunday, so my sister was willing to stay an extra day in order to do that.. but by Saturday, Mom was so fried she changed her mind. Sister and big brother left for home on Saturday morning, not before washing and drying all the sheets and towels and leaving a list of left overs in the fridge for Dad. When I visited Saturday afternoon, Mom seemed somewhat content, but tired and, no doubt, relieved that the house was quite again. Same for Dad.
Sunday morning, I got over there only fifteen minutes after Dad left for church, about nine thirty a.m. She was slumped in her chair, with the television on, and napping with her chin on a pillow. She remarked that "I was early," and I could tell she was depressed, right off the bat.
It turned out to be a very depressing morning for me, too.
The whole morning she dozed off, with a frown on her face, her eyes closed, breathing heavy. I offered an idea for an activity, maybe I could help her write a few Christmas cards? No.
She complained that her back was hurting again. I offered her a Tylenol, but she wanted to wait until later.
I peeled and cut up a grapefruit, and she nibbled on a few pieces.
I reminded her it was her sister's birthday, and I managed to reach her by phone so that Mom could say happy birthday to her. "I love you!" she yelled in her distorted speaking voice.
I did the breakfast dishes, and noted two uneaten halves of cold toast on the cutting board. When Dad called around ten fifteen, he told me she didn't eat much for breakfast. Mom agreed to take a Tylenol for her back pain after Dad said it was okay. He told me to give her some more Ensure, as she only had juice with her small breakfast.
We walked around the dining room table ten times, five rounds in each direction, but I couldn't engage in her in any other exercises or stretches. She went back to her fitful dozing. She was angry that Dad went to church. There is a part of her that understands why he goes, but another part of her that feels like she is abandoned by him when he does.
Her mind is tired, her body is tired, she is caving in.
She ate a whole bowl of white bean and kale soup left over from my sister's batch, and a few crackers and grapes for lunch. A handful of trail mix with chocolate bits for dessert. After lunch, she opted for the couch.
I stayed until Dad came home, a little after one p.m.
I am hoping today she will feel better. I am hoping that yesterday was just a bad day.
She can no longer read or write, play piano or cook, change her clothes. Her sense of time is completely distorted. She does not want pity, and yet she craves comfort from this constant confusion. Her mind no longer belongs to her anymore, it is on it's own poisoned mission.
I just wish I could take away her pain and discomfort, but how does one soothe the brain?
 |
| Thanksgiving 2010 |
Earlier in the week, she had told my sister that she'd like to go to church on Sunday, so my sister was willing to stay an extra day in order to do that.. but by Saturday, Mom was so fried she changed her mind. Sister and big brother left for home on Saturday morning, not before washing and drying all the sheets and towels and leaving a list of left overs in the fridge for Dad. When I visited Saturday afternoon, Mom seemed somewhat content, but tired and, no doubt, relieved that the house was quite again. Same for Dad.
Sunday morning, I got over there only fifteen minutes after Dad left for church, about nine thirty a.m. She was slumped in her chair, with the television on, and napping with her chin on a pillow. She remarked that "I was early," and I could tell she was depressed, right off the bat.
It turned out to be a very depressing morning for me, too.
The whole morning she dozed off, with a frown on her face, her eyes closed, breathing heavy. I offered an idea for an activity, maybe I could help her write a few Christmas cards? No.
She complained that her back was hurting again. I offered her a Tylenol, but she wanted to wait until later.
I peeled and cut up a grapefruit, and she nibbled on a few pieces.
I reminded her it was her sister's birthday, and I managed to reach her by phone so that Mom could say happy birthday to her. "I love you!" she yelled in her distorted speaking voice.
I did the breakfast dishes, and noted two uneaten halves of cold toast on the cutting board. When Dad called around ten fifteen, he told me she didn't eat much for breakfast. Mom agreed to take a Tylenol for her back pain after Dad said it was okay. He told me to give her some more Ensure, as she only had juice with her small breakfast.
We walked around the dining room table ten times, five rounds in each direction, but I couldn't engage in her in any other exercises or stretches. She went back to her fitful dozing. She was angry that Dad went to church. There is a part of her that understands why he goes, but another part of her that feels like she is abandoned by him when he does.
Her mind is tired, her body is tired, she is caving in.
She ate a whole bowl of white bean and kale soup left over from my sister's batch, and a few crackers and grapes for lunch. A handful of trail mix with chocolate bits for dessert. After lunch, she opted for the couch.
I stayed until Dad came home, a little after one p.m.
I am hoping today she will feel better. I am hoping that yesterday was just a bad day.
She can no longer read or write, play piano or cook, change her clothes. Her sense of time is completely distorted. She does not want pity, and yet she craves comfort from this constant confusion. Her mind no longer belongs to her anymore, it is on it's own poisoned mission.
I just wish I could take away her pain and discomfort, but how does one soothe the brain?
Thursday, October 21, 2010
What's Been Happening
Mom's first medication for her AD (pre-official diagnosis) was 5 mg. of Donepezil (Aricept). After about 2-3 months, her doctor, Dr. N., upped the dose to 10 mg. a day. I believe it was at that visit that he also suggest she visit with the neurologist, Dr. D., and get an MRI on her brain. Sometime between those visits, she was also prescribed Remeron to increase her appetite (as with most people with AD, I've learned, one of the symptoms is loss of interest in eating and food) and it also acts as a mild anti-depressant. She added that pill for the first two nights, but didn't like the way it made her feel so groggy in the morning, so Dad allowed her to stop it for about a week. This was all still before "the official diagnosis", the brain scan results. And all this was only a few weeks ago.
On Friday, October 8, 2010, a few days after the test results were shown and Dad began to believe the inevitable truth, Dad left after lunch to fulfill a commitment he had made to work a political booth at the local fair. Being away for this long a period (over 4 -6 hours) was still something he thought he could do. I live next door, and I've been keeping tabs on their whereabouts for quite some time now. Mom was distressed that Dad would be leaving for so long, and when I stopped by to check in on her about an hour later, she complained that she hurt her back. I assumed it was a muscle pull and gave her an Aleve, propped her up in her favorite chair with a book, and went back home to attend to my chores.
Around 4:30 that afternoon, she called and was stressed that Dad was not home yet (I assured her he was on his way, traffic was bad, he was picking up dinner), she agreed to that, but then admitted her back was really bothering her. I offered to bring my heating pad over, and she was very happy about that. This was a holiday weekend, and my older sister Clarissa came up Saturday afternoon (she lives 2 1/2 - 3 hours away in Mass.) for one night to check in on things. She was pretty shocked at what she saw with Mom. We had a long discussion about it on Sunday afternoon in private, and we both agreed things were getting to a critical stage.
It wasn't until Tuesday morning that Dad was able to call Dr. N., the internal medicine doctor, about Mom's back pain. He also told the assistant that Mom hadn't been taking the appetite/anti-depressant drug, Remeron, but somehow, Dad had convinced her to start it up again, but it had only been a couple of nights. Dr. N. suggested she should come in that day for an X ray.
Later that night, Tuesday October 12, the doctors office called with the results. Mom had a compression fracture of the 6th thoracic vertebrate. She was upset and lifting a small tray at the same time, this is how it happened. Because she has lost so much weight and been so inactive for over a year now, she has become very frail. In hindsight, I wish I had been more aggressive with her eating and exercising, however, there is no sense in beating myself up about that now.
Between the alarming reality of this news and the visit with my sister, Dad finally realized it was time to get more proactive and at least gain some extra help. Our neighbor had already suggested a great private home care worker, who lives just down the road, and helped out our other neighbor's life partner in his last year with dementia and AD. Dad was set on calling her, and Mom hadn't had a bath in over two weeks. He had given her a few in the last month, as I had one on the last weekend of September, but now with the back pain and the deep tub, it was time for extra help. He called Maria and she came over for a visit that afternoon (after the X ray visit and before the X ray results phone call.) I met with her, too, and it was agreed that she would come the next morning and give Mom a bath, and at that same time once a week. Maria went to our neighbor's house and got the special bath chair, and I told Dad to go to the local pharmacy and purchase a shower hose.
Maria was great, and in our first visit, also suggested purchasing soy protein powder or Ensure to help boost Mom's caloric intake. She had other suggestions like prunes, broccoli and bananas for potassium. In the last few days, Mom's appetite has seemed to increase, and Dad has been much better about giving her more foods with snacks in between meals. Meanwhile, her back pain is still there, off and on, and a Tylenol every four hours was prescribed for her back pain, as well as movement.
The next Saturday, October 16, my brother Nat came up from Mass. for Saturday night to spend some time with Mom and Dad. He was really great and brought up some food and one of his favorite drinks, soy milk. Every Sunday, Mom and Dad have always gone to church, but, wouldn't you know it, now Mom's coming up on week four of refusing to go anymore. The back pain was the first excuse, but it's also the confusion with singing in the choir and talking with the people, classic symptoms of AD. So, on that Sunday, the second time she missed church, Nat spent most of the morning with her, and even got her up and walking around a bit. Thanks to Nat, she now tears around the dining room table for exercise. It's kind of cute to see.
Later that day, a couple from church, friends who had spent time with Mom before she worsened, came to stay with Mom for the afternoon. Dad was performing in a church concert from 2 - 3 pm, and would not be home until 4 pm. Sadly, he had to do it alone this time. Up until this year, they were always a team in the choir. Because Mom's back pain was still acute, she wanted to stay home, though she hated to miss her husband's performance. The couple from church were very patient and sweet, and just sat and read together while Mom nodded off for a bit. She seems to sleep a lot more now.
So, this pretty much leads me up to yesterday, October 20, where we visited with the neurologist, Dr. D., for a discussion about the results of her brain scan. Right off the bat, the first simple question he asked Mom made it painfully clear she is suffering from this horrible disease. She could not connect her thoughts to her words, she stammered, she got lost, she looked to her husband for help. It was very painful to watch. Finally, after three years of wondering, of assuming that Mom suffers from Alzheimer's Disease, Dr. D. was the first official to come out and say it, directly to her face, that she is experiencing the first stages of Alzheimer's Disease. Finally, somebody said it. Dad said, "this is what I have suspected" and so finally, he said it, too. Mom nodded, she knows.
Dr. D. clearly stated there was no known cure for this disease, but empathetically proclaimed he really wanted to help her. I really believed him. He asked her if she would like to participate in a clinical trial, and when she strongly said "no", he did not push the matter. He could see how uncomfortable Mom was with her back pain, and wrote a letter to Dr. N. to prescribe her a stronger pain medication. Meanwhile, Dr. D. prescribed the next phase in this journey, another drug called Memantine, or Namenda. She will start this drug tonight, and gradually build up to the suggested dosage.
Meanwhile, I need to start getting organized and work out a plan of action with Dad. This is what I'm willing to do and want to do. I am in a position to help, and Dad and Mom need it. So, I'll stop writing for now, and soon I will go over to their house and stay with Mom so Dad can go pick up the pills and buy foods for dinner. Hopefully something with curry. Dr. D. says studies show that curry is good for the brain. :)
On Friday, October 8, 2010, a few days after the test results were shown and Dad began to believe the inevitable truth, Dad left after lunch to fulfill a commitment he had made to work a political booth at the local fair. Being away for this long a period (over 4 -6 hours) was still something he thought he could do. I live next door, and I've been keeping tabs on their whereabouts for quite some time now. Mom was distressed that Dad would be leaving for so long, and when I stopped by to check in on her about an hour later, she complained that she hurt her back. I assumed it was a muscle pull and gave her an Aleve, propped her up in her favorite chair with a book, and went back home to attend to my chores.
Around 4:30 that afternoon, she called and was stressed that Dad was not home yet (I assured her he was on his way, traffic was bad, he was picking up dinner), she agreed to that, but then admitted her back was really bothering her. I offered to bring my heating pad over, and she was very happy about that. This was a holiday weekend, and my older sister Clarissa came up Saturday afternoon (she lives 2 1/2 - 3 hours away in Mass.) for one night to check in on things. She was pretty shocked at what she saw with Mom. We had a long discussion about it on Sunday afternoon in private, and we both agreed things were getting to a critical stage.
It wasn't until Tuesday morning that Dad was able to call Dr. N., the internal medicine doctor, about Mom's back pain. He also told the assistant that Mom hadn't been taking the appetite/anti-depressant drug, Remeron, but somehow, Dad had convinced her to start it up again, but it had only been a couple of nights. Dr. N. suggested she should come in that day for an X ray.
 |
| October 11, 2010 |
Later that night, Tuesday October 12, the doctors office called with the results. Mom had a compression fracture of the 6th thoracic vertebrate. She was upset and lifting a small tray at the same time, this is how it happened. Because she has lost so much weight and been so inactive for over a year now, she has become very frail. In hindsight, I wish I had been more aggressive with her eating and exercising, however, there is no sense in beating myself up about that now.
Between the alarming reality of this news and the visit with my sister, Dad finally realized it was time to get more proactive and at least gain some extra help. Our neighbor had already suggested a great private home care worker, who lives just down the road, and helped out our other neighbor's life partner in his last year with dementia and AD. Dad was set on calling her, and Mom hadn't had a bath in over two weeks. He had given her a few in the last month, as I had one on the last weekend of September, but now with the back pain and the deep tub, it was time for extra help. He called Maria and she came over for a visit that afternoon (after the X ray visit and before the X ray results phone call.) I met with her, too, and it was agreed that she would come the next morning and give Mom a bath, and at that same time once a week. Maria went to our neighbor's house and got the special bath chair, and I told Dad to go to the local pharmacy and purchase a shower hose.
Maria was great, and in our first visit, also suggested purchasing soy protein powder or Ensure to help boost Mom's caloric intake. She had other suggestions like prunes, broccoli and bananas for potassium. In the last few days, Mom's appetite has seemed to increase, and Dad has been much better about giving her more foods with snacks in between meals. Meanwhile, her back pain is still there, off and on, and a Tylenol every four hours was prescribed for her back pain, as well as movement.
The next Saturday, October 16, my brother Nat came up from Mass. for Saturday night to spend some time with Mom and Dad. He was really great and brought up some food and one of his favorite drinks, soy milk. Every Sunday, Mom and Dad have always gone to church, but, wouldn't you know it, now Mom's coming up on week four of refusing to go anymore. The back pain was the first excuse, but it's also the confusion with singing in the choir and talking with the people, classic symptoms of AD. So, on that Sunday, the second time she missed church, Nat spent most of the morning with her, and even got her up and walking around a bit. Thanks to Nat, she now tears around the dining room table for exercise. It's kind of cute to see.
Later that day, a couple from church, friends who had spent time with Mom before she worsened, came to stay with Mom for the afternoon. Dad was performing in a church concert from 2 - 3 pm, and would not be home until 4 pm. Sadly, he had to do it alone this time. Up until this year, they were always a team in the choir. Because Mom's back pain was still acute, she wanted to stay home, though she hated to miss her husband's performance. The couple from church were very patient and sweet, and just sat and read together while Mom nodded off for a bit. She seems to sleep a lot more now.
So, this pretty much leads me up to yesterday, October 20, where we visited with the neurologist, Dr. D., for a discussion about the results of her brain scan. Right off the bat, the first simple question he asked Mom made it painfully clear she is suffering from this horrible disease. She could not connect her thoughts to her words, she stammered, she got lost, she looked to her husband for help. It was very painful to watch. Finally, after three years of wondering, of assuming that Mom suffers from Alzheimer's Disease, Dr. D. was the first official to come out and say it, directly to her face, that she is experiencing the first stages of Alzheimer's Disease. Finally, somebody said it. Dad said, "this is what I have suspected" and so finally, he said it, too. Mom nodded, she knows.
Dr. D. clearly stated there was no known cure for this disease, but empathetically proclaimed he really wanted to help her. I really believed him. He asked her if she would like to participate in a clinical trial, and when she strongly said "no", he did not push the matter. He could see how uncomfortable Mom was with her back pain, and wrote a letter to Dr. N. to prescribe her a stronger pain medication. Meanwhile, Dr. D. prescribed the next phase in this journey, another drug called Memantine, or Namenda. She will start this drug tonight, and gradually build up to the suggested dosage.
Meanwhile, I need to start getting organized and work out a plan of action with Dad. This is what I'm willing to do and want to do. I am in a position to help, and Dad and Mom need it. So, I'll stop writing for now, and soon I will go over to their house and stay with Mom so Dad can go pick up the pills and buy foods for dinner. Hopefully something with curry. Dr. D. says studies show that curry is good for the brain. :)
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