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 food. Show all posts
Showing posts with label food. 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.
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 8, 2011
Home
Yesterday I got over early, and once Mom was "up" and dressed, I told Dad to take off for a while and do what he had to do. I read some to Mom, got her up and outside a couple of times, fed her what foods I could get her to eat, and kept encouraging her to drink the high calorie drinks.
She has been more confused and whiney than ever. This is especially true by the late afternoon. After Dad got home in the mid afternoon, I ran down town to bank and thought I'd stop on the way back and pick up a shrimp cocktail. I had had some success with her eating appetizers the day before - making a big deal about it with her watered down wine, so I thought she'd enjoy some shrimps. And she did! She ate about six of them, plus a couple of crackers with spreadable cheese.
However, her confusion is devastating. Before "cocktail hour," she and I were sitting in front of the tube, and an ad for chocolate came on. This made her want a square of chocolate, so I got up and brought her one. She took a bite of it and said, "Here," and pointed to the television with the half-eaten piece in her hand. I replied, "You mean me? I had a bite, I'm all set, thanks." And she said, "No, for the girl!" "What girl, Mom?" "The girl in the t.v.!"
Well, I told her we couldn't give it to the girl in the t.v. because, well, she was in the t.v., and then I added, plus, she just ate a square, so she was all set, too. "Oh."
At another point, when she began to get fidgety in her chair, I asked her if she wanted.. oh, I don't, something like, me to turn on the television. "No!" she said, "I've got work to do!"
Sometimes, I'll try and distract her by having her "help" me with small tasks. They say this is helpful, and I do find it works, though the limited use of her arm still makes it frustrating for her.
The worst part is her confusion about "home." This concept of home, what does it mean to her? I still think it's a cry out to "get her out of her own head." Home means being normal again. And it hurts to not be able to get her back to that.
She cries out for Dad a lot, too, even if he's not there. I have to remind her that he's either out or downstairs or taking a walk or on the phone or in the bathroom taking a leak (like he just said to her a minute earlier.)
Our patience is tested constantly. Our hearts are heavy with her agony and our minds our cluttered with all of the things we are encouraged to do for Mom's comfort and health. Their are small moments of lightness, when her confusion does make her say something funny, or when she does have a tiny moment of clarity. She still has razor sharp hearing, and she does respond well to gentle touch. Just holding her hand or caressing her head or neck is soothing to her.
But the painful reality is that it is so frustrating to be unable to take away her confusion, discomfort and fear.
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| April 8, 2011 |
She has been more confused and whiney than ever. This is especially true by the late afternoon. After Dad got home in the mid afternoon, I ran down town to bank and thought I'd stop on the way back and pick up a shrimp cocktail. I had had some success with her eating appetizers the day before - making a big deal about it with her watered down wine, so I thought she'd enjoy some shrimps. And she did! She ate about six of them, plus a couple of crackers with spreadable cheese.
However, her confusion is devastating. Before "cocktail hour," she and I were sitting in front of the tube, and an ad for chocolate came on. This made her want a square of chocolate, so I got up and brought her one. She took a bite of it and said, "Here," and pointed to the television with the half-eaten piece in her hand. I replied, "You mean me? I had a bite, I'm all set, thanks." And she said, "No, for the girl!" "What girl, Mom?" "The girl in the t.v.!"
Well, I told her we couldn't give it to the girl in the t.v. because, well, she was in the t.v., and then I added, plus, she just ate a square, so she was all set, too. "Oh."
At another point, when she began to get fidgety in her chair, I asked her if she wanted.. oh, I don't, something like, me to turn on the television. "No!" she said, "I've got work to do!"
Sometimes, I'll try and distract her by having her "help" me with small tasks. They say this is helpful, and I do find it works, though the limited use of her arm still makes it frustrating for her.
The worst part is her confusion about "home." This concept of home, what does it mean to her? I still think it's a cry out to "get her out of her own head." Home means being normal again. And it hurts to not be able to get her back to that.
She cries out for Dad a lot, too, even if he's not there. I have to remind her that he's either out or downstairs or taking a walk or on the phone or in the bathroom taking a leak (like he just said to her a minute earlier.)
Our patience is tested constantly. Our hearts are heavy with her agony and our minds our cluttered with all of the things we are encouraged to do for Mom's comfort and health. Their are small moments of lightness, when her confusion does make her say something funny, or when she does have a tiny moment of clarity. She still has razor sharp hearing, and she does respond well to gentle touch. Just holding her hand or caressing her head or neck is soothing to her.
But the painful reality is that it is so frustrating to be unable to take away her confusion, discomfort and fear.
Sunday, April 3, 2011
Sunday Afternoon In Early April
Another short post. Mom has been sleeping a lot, eating little, but still drinking fluids, walking a little, and in the afternoons, mostly, still has her wit.
Thursday a friend of theirs from the church, who just also happens to be a professional hospice nurse and works for the very agency that has been giving us interem help, offered to give Dad and me a break and stayed with Mom from ten in the morning until nearly five in the afternoon. Amazing, and she was happy to do it. During that time, I was able to learn more about how hospice (long term) works, and meanwhile, Dad visited a nursing home facility in the town where their doctor and their church is, and learned more about that. He stressed that they did not pressure him to admit her, in fact, they gave him a lot of information on in-home, long term hospice care, too.
This is where we are at right now.. sort of waiting.. and then we need to get an evaluation as well as the okay from the doctor to see if we can qualify for this hospice service. I'd like to keep Mom at home as long as possible, though it's taking a toll on Dad.
Today, another friend, Chris, came at noon. She is a ball of sunshine and good vibes, she brought a meal of rice and chicken, and Mom is in good hands while Dad and I are away.
As crappy as it all is, things could be a lot worse.
Thursday a friend of theirs from the church, who just also happens to be a professional hospice nurse and works for the very agency that has been giving us interem help, offered to give Dad and me a break and stayed with Mom from ten in the morning until nearly five in the afternoon. Amazing, and she was happy to do it. During that time, I was able to learn more about how hospice (long term) works, and meanwhile, Dad visited a nursing home facility in the town where their doctor and their church is, and learned more about that. He stressed that they did not pressure him to admit her, in fact, they gave him a lot of information on in-home, long term hospice care, too.
This is where we are at right now.. sort of waiting.. and then we need to get an evaluation as well as the okay from the doctor to see if we can qualify for this hospice service. I'd like to keep Mom at home as long as possible, though it's taking a toll on Dad.
Today, another friend, Chris, came at noon. She is a ball of sunshine and good vibes, she brought a meal of rice and chicken, and Mom is in good hands while Dad and I are away.
As crappy as it all is, things could be a lot worse.
Friday, March 25, 2011
Even Steven
No news is good news, right?
That's how it has felt the last few days. We seem to be at an even keel right now, with the sunnier, warmer days (though a few snow showers here and there), and Mom just kicking along, nibbling on foods here and there, sleeping a lot, and some little walks thrown in for good measure. Looking forward to warmer days so I can get her out for more sunshine and exercise. We had our last visit from the occupational therapist, Gwen, yesterday, and right now, the physical therapist is visiting while I am still at home. I suspect we may see Nurse M. later today, too, but maybe not. I'm heading over there within the hour so that Dad can run down town and get his hair cut and go food shopping. I think my sister is coming up tomorrow for the night and hopefully to stay with Mom on Sunday.
That's how it has felt the last few days. We seem to be at an even keel right now, with the sunnier, warmer days (though a few snow showers here and there), and Mom just kicking along, nibbling on foods here and there, sleeping a lot, and some little walks thrown in for good measure. Looking forward to warmer days so I can get her out for more sunshine and exercise. We had our last visit from the occupational therapist, Gwen, yesterday, and right now, the physical therapist is visiting while I am still at home. I suspect we may see Nurse M. later today, too, but maybe not. I'm heading over there within the hour so that Dad can run down town and get his hair cut and go food shopping. I think my sister is coming up tomorrow for the night and hopefully to stay with Mom on Sunday.
Friday, March 18, 2011
Better Today
Mom was better today.. Turns out, Dad informed me this morning, that she ended up sleeping on one of the couches in the living room all night. She called for him at six-thirty in the morning, and he helped her into their bed then, where she slept some more until about nine-thirty, I think.
When I got there, she was dozing in her chair, having just had her juice, pills, Ensure, and a banana half, and later, I helped her eat an entire hard boiled egg and drink a glass of orange juice. We were expecting visitors today, but everyone showed up later than expected and our nurse M. ended up rescheduling for Monday. I took off the bandage on her ankle with the pressure wound and let it air for a few hours, then when the P.T. Brian arrived, I applied a simple band aid, her socks and sneakers, and we three went outside for three loops up and down the driveway in the windy but warm late winter air. Then we sat her down on one of the chairs on the front porch in the sunshine, and Brian had her do some leg exercises. After a good half an hour in the sunshine, we went back in, and he had Mom show him how she used the bed bar. Then he let her rest, promising to call next week.
After another forty-five minutes -and by this time, Mom and Dad had already eaten their "dinner" lunch of salmon, rice and green beans - the home health aid Linda showed up and gave Mom a light sponge bath, moisturizer and a fresh shirt. It was a short visit as Mom was tired from her "work out," and we let her settle back down, up right, on the couch with her feet up. Dad had retired to the basement for awhile, and I read aloud from the Cuban travels book.
Four o'clock came, and Dad took his pills and we gave Mom her Haloperidol pill. She was less confused today, and even asked us if it was just the one pill she was to swallow. One more bathroom break later, I settled her back up right onto the couch and went home.
On my walk back, I saw my brother's car at the top of our driveway. He's up skiing with friends and is staying over night with us. He zipped over to spend some time with Mom, and I think it's good for everyone to have more visitors, as tired as Dad is these days.
When I got there, she was dozing in her chair, having just had her juice, pills, Ensure, and a banana half, and later, I helped her eat an entire hard boiled egg and drink a glass of orange juice. We were expecting visitors today, but everyone showed up later than expected and our nurse M. ended up rescheduling for Monday. I took off the bandage on her ankle with the pressure wound and let it air for a few hours, then when the P.T. Brian arrived, I applied a simple band aid, her socks and sneakers, and we three went outside for three loops up and down the driveway in the windy but warm late winter air. Then we sat her down on one of the chairs on the front porch in the sunshine, and Brian had her do some leg exercises. After a good half an hour in the sunshine, we went back in, and he had Mom show him how she used the bed bar. Then he let her rest, promising to call next week.
After another forty-five minutes -and by this time, Mom and Dad had already eaten their "dinner" lunch of salmon, rice and green beans - the home health aid Linda showed up and gave Mom a light sponge bath, moisturizer and a fresh shirt. It was a short visit as Mom was tired from her "work out," and we let her settle back down, up right, on the couch with her feet up. Dad had retired to the basement for awhile, and I read aloud from the Cuban travels book.
Four o'clock came, and Dad took his pills and we gave Mom her Haloperidol pill. She was less confused today, and even asked us if it was just the one pill she was to swallow. One more bathroom break later, I settled her back up right onto the couch and went home.
On my walk back, I saw my brother's car at the top of our driveway. He's up skiing with friends and is staying over night with us. He zipped over to spend some time with Mom, and I think it's good for everyone to have more visitors, as tired as Dad is these days.
Thursday, March 17, 2011
Another Bad Day
So, this was what they call "a bad day" for Mom. When I got over there at nine forty-five in the morning, she was still in bed, and Dad was rushing around trying to get his stuff together for another trip down town for an eye appointment and other errands. He got her out of bed, then I took over from there. Before I joined her in the bathroom, though, I read some notes Dad had wrote down in the notebook, both last night and early this morning.
Last night, she had moments of restlessness, then she ate fairly well at dinner and eventually settled down and watched television with Dad. By twenty minutes past eight, she wanted to go to bed. Around four in the morning, he was awoken by her trying to get up. He said she got up and down several times, eventually ending up on the toilet to pee. She had trouble wiping herself, and at one point, he wrote, she tried to put the toilet paper in her mouth. Back in bed, she began to babble, asking to "Go home," "Were the children okay," and even, "Where is my husband?" He finally gave in and gave her two of the Ativan pills (the mild sedatives), but they didn't seem to work, he thought.
After awhile, they fell back asleep, but naturally, it was harder for him to get back into a good sleep. Armed with this new information, I helped her at the toilet, then got her dressed. She moaned horribly about pain in one of her left toes, so once I had her settle in her chair in the living room and gave her her two morning pills and juice, I went and got a wash rag and soaked it in warm water and applied it to her toes. She said this made her feel better. I went on and made her a hard boiled egg, of which she ate three quarters of, plus most of half of a banana and a glass of Ensure. She stayed in the chair for a while with her eyes closed, listening to the music from the movie "Finnegens Wake," which was playing on Turner Classic Movies.
By this time, Dad was gone, and I just sat with Mom, eventually moving her to the couch. Around noon, the occupational therapist, Gwen, arrived, for her third visit with us, and I filled her in on the depressing events of the day. Gwen came and sat with Mom and asked her a few questions, one of them being, "Do you know where you are?" and Mom replied, "I'm home, in Maine." When I asked her that same question yesterday, she replied that she was home in Massachusetts. Go figure.
There wasn't a whole lot Gwen could do today, so I think just having her there, sitting and chatting, made it enough of an event to say something happened today. Mom's eyes were closed most of the time and she was much grumpier and short tempered then usual. Gwen reminded me that their are going to be good days and bad days, and this was one of the latter. We also managed to discuss my concern for Dad's health and sanity, like his inability to get a good night's sleep. She suggested I might consider sleeping over some night, so that Dad could sleep elsewhere in the house. I told her I had already considered that, and when I brought that up with Mom, I asked her if she thought that would be fun, and she said, "No, I don't think so."
The O.T. left, Dad came home, and I left to run some last minute errands for our planned afternoon dinner. When I got home, Dad called and admitted that he was just too tired to pack Mom up and come over here, so we agreed to pack up the meal and haul it over there. I was hoping Mom would perk up a little at the prospect of a little celebratory dinner, like she did last Saturday night with the rest of the family, but she remained kind of cranky and groggy. She did sit at the table with us, though, and ate a decent amount of the corned beef and veggies, and seemed to enjoy it. But soon enough, before any of the rest of us where finished eating, she wanted up, so I helped her up and back to her chair. She got up once or twice more as we finished eating, even coming back to her plate and eating another bite of food with her fingers, and then we cleared the dishes and I put out dessert. I had received a package in the mail yesterday with four speciality cupcakes shipped from California, with a card in the box that said "Thinking of you," from a wonderful friend and her husband up here. My friend just lost her mother to Alzheimer's Disease early last month, so her empathy for my experience is profound. I thought it appropriate to share these treats with my parents today, and they were delicious and unique.
I did the dishes and then stood in the hallway, while Mom was on the couch, and Dad began to share some day to day stuff with me. Soon enough, however, we were interrupted by Mom, who was disturbed by our conversation. So, Dad and I went and sat with her, turning off the television and quietly conversing for a few more minutes. Mom stirred then, and I helped her use the toilet. I was sitting on the bath tub in front of her, waiting for her to finish, and when she was done she said to me, "Tell the girl I'm ready now." "That's me, Mom, here we go," I replied, and helped her pull up her panties and pants. I settled her back onto the couch, and Dad said he thought he'd like to lie down on their bed for a nap, as much as he didn't want to mess up his sleep routine. Mom seemed content, so I decided to go home.
Back home, my partner and I discussed the situation some more. Mom was really confused a lot today, sometimes saying things completely out of context. At one point she said, "Come on, it's time to go." "Where?" I asked. "Next door! To our apartment!" Other times, just stuff that made no sense at all. Is today just a bad day? Will she be better tomorrow? How much longer can Dad go on without seriously jeopardizing his health? We know for a fact this is only going to get worse.
And then you begin to get pissed off about all the drugs. What's the point, you wonder, in "slowing down the disease," when it's only prolonging the confusion and suffering? How long do you try and keep them home, where they are loved and cared for, though they don't even know where they are anymore? How do you make decisions for people who can no longer make decisions for themselves?
My partner and I concluded that there simply is no "right" answer to the multi-faceted questions involved with this disease. Everybody reacts differently to all of the drugs and methods to alleviate the symptoms, and meanwhile, there is no cure and worse, the person continues to suffer a miserable existence until they die. On top of that, the care givers sacrifice and suffer, too. Have we done all we can? Is there more we could do? Who has the answers? Nobody, that's who.
Hopefully, tomorrow we'll see a brighter eyed Mom.
Last night, she had moments of restlessness, then she ate fairly well at dinner and eventually settled down and watched television with Dad. By twenty minutes past eight, she wanted to go to bed. Around four in the morning, he was awoken by her trying to get up. He said she got up and down several times, eventually ending up on the toilet to pee. She had trouble wiping herself, and at one point, he wrote, she tried to put the toilet paper in her mouth. Back in bed, she began to babble, asking to "Go home," "Were the children okay," and even, "Where is my husband?" He finally gave in and gave her two of the Ativan pills (the mild sedatives), but they didn't seem to work, he thought.
After awhile, they fell back asleep, but naturally, it was harder for him to get back into a good sleep. Armed with this new information, I helped her at the toilet, then got her dressed. She moaned horribly about pain in one of her left toes, so once I had her settle in her chair in the living room and gave her her two morning pills and juice, I went and got a wash rag and soaked it in warm water and applied it to her toes. She said this made her feel better. I went on and made her a hard boiled egg, of which she ate three quarters of, plus most of half of a banana and a glass of Ensure. She stayed in the chair for a while with her eyes closed, listening to the music from the movie "Finnegens Wake," which was playing on Turner Classic Movies.
By this time, Dad was gone, and I just sat with Mom, eventually moving her to the couch. Around noon, the occupational therapist, Gwen, arrived, for her third visit with us, and I filled her in on the depressing events of the day. Gwen came and sat with Mom and asked her a few questions, one of them being, "Do you know where you are?" and Mom replied, "I'm home, in Maine." When I asked her that same question yesterday, she replied that she was home in Massachusetts. Go figure.
There wasn't a whole lot Gwen could do today, so I think just having her there, sitting and chatting, made it enough of an event to say something happened today. Mom's eyes were closed most of the time and she was much grumpier and short tempered then usual. Gwen reminded me that their are going to be good days and bad days, and this was one of the latter. We also managed to discuss my concern for Dad's health and sanity, like his inability to get a good night's sleep. She suggested I might consider sleeping over some night, so that Dad could sleep elsewhere in the house. I told her I had already considered that, and when I brought that up with Mom, I asked her if she thought that would be fun, and she said, "No, I don't think so."
The O.T. left, Dad came home, and I left to run some last minute errands for our planned afternoon dinner. When I got home, Dad called and admitted that he was just too tired to pack Mom up and come over here, so we agreed to pack up the meal and haul it over there. I was hoping Mom would perk up a little at the prospect of a little celebratory dinner, like she did last Saturday night with the rest of the family, but she remained kind of cranky and groggy. She did sit at the table with us, though, and ate a decent amount of the corned beef and veggies, and seemed to enjoy it. But soon enough, before any of the rest of us where finished eating, she wanted up, so I helped her up and back to her chair. She got up once or twice more as we finished eating, even coming back to her plate and eating another bite of food with her fingers, and then we cleared the dishes and I put out dessert. I had received a package in the mail yesterday with four speciality cupcakes shipped from California, with a card in the box that said "Thinking of you," from a wonderful friend and her husband up here. My friend just lost her mother to Alzheimer's Disease early last month, so her empathy for my experience is profound. I thought it appropriate to share these treats with my parents today, and they were delicious and unique.
I did the dishes and then stood in the hallway, while Mom was on the couch, and Dad began to share some day to day stuff with me. Soon enough, however, we were interrupted by Mom, who was disturbed by our conversation. So, Dad and I went and sat with her, turning off the television and quietly conversing for a few more minutes. Mom stirred then, and I helped her use the toilet. I was sitting on the bath tub in front of her, waiting for her to finish, and when she was done she said to me, "Tell the girl I'm ready now." "That's me, Mom, here we go," I replied, and helped her pull up her panties and pants. I settled her back onto the couch, and Dad said he thought he'd like to lie down on their bed for a nap, as much as he didn't want to mess up his sleep routine. Mom seemed content, so I decided to go home.
Back home, my partner and I discussed the situation some more. Mom was really confused a lot today, sometimes saying things completely out of context. At one point she said, "Come on, it's time to go." "Where?" I asked. "Next door! To our apartment!" Other times, just stuff that made no sense at all. Is today just a bad day? Will she be better tomorrow? How much longer can Dad go on without seriously jeopardizing his health? We know for a fact this is only going to get worse.
And then you begin to get pissed off about all the drugs. What's the point, you wonder, in "slowing down the disease," when it's only prolonging the confusion and suffering? How long do you try and keep them home, where they are loved and cared for, though they don't even know where they are anymore? How do you make decisions for people who can no longer make decisions for themselves?
My partner and I concluded that there simply is no "right" answer to the multi-faceted questions involved with this disease. Everybody reacts differently to all of the drugs and methods to alleviate the symptoms, and meanwhile, there is no cure and worse, the person continues to suffer a miserable existence until they die. On top of that, the care givers sacrifice and suffer, too. Have we done all we can? Is there more we could do? Who has the answers? Nobody, that's who.
Hopefully, tomorrow we'll see a brighter eyed Mom.
Communication And Eating
Yesterday it snowed all day, a warm, big fluffy flaked snow, totaling by the end of the day to nearly four inches. Dad left at ten in the morning, bound for a southeastern town an hour and a half away, check book in pocket. He was off to trade in his 2005 car and come back with a newer (2010) one. This was advise from the lawyer he met with earlier this month - "spend your money on yourself!" No need to twist his arm. Off he went, and knowing this, I allowed myself another forty five minutes at home while Maria was with Mom at the house.
When I arrived, Maria had Mom sitting quietly on the couch, and she was working on Mom's toenails and feet. She is so attentive. Mom's toenails were getting long. I sat with them as Maria changed the bandage on the ankle bone. Then I helped Maria strip the bed sheets on their bed and put fresh sheets on. Maria also quickly cleaned out the bath tub. She always stays later than we pay her for and does extra things. Her standards are high for such an under payed, under appreciated job!
After she left, all Mom was interested in was to lay on the couch with her eyes closed. I settled her in and let her do that as I put in a load of laundry and tidied up around the house a little. Dad called a few times through out the day to let us know where he was at in his process. When he'd call, I speak with him first, and then I'd pass the phone over to Mom, and she'd speak with him in her disjointed, overly loud speaking voice, sometimes stumbling over her words. Damn disease, taking away a person's ability to communicate.
Around one in the afternoon, I sat her down at the dining room table for a plate of brown rice and chicken, with a few heated up carrots on the side. She ate a few bites but quickly lost interest. She does love her cranberry juice though, which she has taken to calling the brown stuff. When she wants to stop, her breathing picks up and her eyes begin to wander. She starts to push the plate away from her and tries to get herself up out of the chair. She usually hasn't even finished chewing the last bite of food she had in her mouth while this is going on. I ask her to finish chewing and to swallow, then I put another bite of food on her fork and encourage her to take one more bite. Sometimes she accepts the food, but when she's done, she is done. She reels her head back and yells out, "I don't want anymore!" So, I drop it.
The rest of the afternoon, she rested on the couch. Towards the last hour or so before Dad got home around four, I read from the Cuba travel essay book. When Dad came home, we got up and went to look at the new car parked in the garage. We said that maybe tomorrow she could go for a ride in the car.
Mom is more confused, some moments are worse then others. Yesterday, when Dad got home, he took his pills at four o'clock, and we gave Mom her Haloperidol pill, too, after a two day break from it. We've started trying to keep better notes in the notebook.
I've bought some corn beef and cabbage and we plan on cooking that up today. The plan is to share that with Mom and Dad, either at our house or at theirs. We'll see how she's doing today. Dad has another appointment this morning, but hopefully, it won't be too long.
When I arrived, Maria had Mom sitting quietly on the couch, and she was working on Mom's toenails and feet. She is so attentive. Mom's toenails were getting long. I sat with them as Maria changed the bandage on the ankle bone. Then I helped Maria strip the bed sheets on their bed and put fresh sheets on. Maria also quickly cleaned out the bath tub. She always stays later than we pay her for and does extra things. Her standards are high for such an under payed, under appreciated job!
After she left, all Mom was interested in was to lay on the couch with her eyes closed. I settled her in and let her do that as I put in a load of laundry and tidied up around the house a little. Dad called a few times through out the day to let us know where he was at in his process. When he'd call, I speak with him first, and then I'd pass the phone over to Mom, and she'd speak with him in her disjointed, overly loud speaking voice, sometimes stumbling over her words. Damn disease, taking away a person's ability to communicate.
Around one in the afternoon, I sat her down at the dining room table for a plate of brown rice and chicken, with a few heated up carrots on the side. She ate a few bites but quickly lost interest. She does love her cranberry juice though, which she has taken to calling the brown stuff. When she wants to stop, her breathing picks up and her eyes begin to wander. She starts to push the plate away from her and tries to get herself up out of the chair. She usually hasn't even finished chewing the last bite of food she had in her mouth while this is going on. I ask her to finish chewing and to swallow, then I put another bite of food on her fork and encourage her to take one more bite. Sometimes she accepts the food, but when she's done, she is done. She reels her head back and yells out, "I don't want anymore!" So, I drop it.
The rest of the afternoon, she rested on the couch. Towards the last hour or so before Dad got home around four, I read from the Cuba travel essay book. When Dad came home, we got up and went to look at the new car parked in the garage. We said that maybe tomorrow she could go for a ride in the car.
Mom is more confused, some moments are worse then others. Yesterday, when Dad got home, he took his pills at four o'clock, and we gave Mom her Haloperidol pill, too, after a two day break from it. We've started trying to keep better notes in the notebook.
I've bought some corn beef and cabbage and we plan on cooking that up today. The plan is to share that with Mom and Dad, either at our house or at theirs. We'll see how she's doing today. Dad has another appointment this morning, but hopefully, it won't be too long.
Wednesday, March 16, 2011
Tuesday
Yesterday I arrived about nine-thirty in the morning. Dad went off to get some stuff done, and I had a calm morning with Mom. She stayed in her chair most of the time, dozing off and on. We watched a movie and then I did some more reading aloud from the travel essays of Cuba. I made her an egg salad sandwich and she ate three or four bites, plus a few Sun Chips and a couple of carrot bites. Then I fed her a medium sized bowl of butter crunch flavored ice cream. I managed to talk her into going outside on the side porch for five minutes to sit in the early spring sunshine. Dad got home around two in the afternoon, and I took the rest of the day "off."
She's had two days off from the Haloperidol, and last night Dad called me after their dinner to say that he noticed Mom was getting antsy that afternoon, so we will start her back up on it this afternoon, probably at four, when he takes his pills.
Dad I discussed a few more things regarding the future. Not easy stuff to talk about.
She's had two days off from the Haloperidol, and last night Dad called me after their dinner to say that he noticed Mom was getting antsy that afternoon, so we will start her back up on it this afternoon, probably at four, when he takes his pills.
Dad I discussed a few more things regarding the future. Not easy stuff to talk about.
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.
Friday, March 11, 2011
Thursday
Thursday, we just had one visit from the Occupational Therapist. She wanted to observe how Mom used the shower/bath chair, and Mom seemed to pass the test. She asked a few other questions, we asked a few questions about home safety, and then she scooted out (it was snowing and we were all concerned she might not be able to get out and up the road, but she did.)
Mom was pretty calm, for her. My observation is that the "haldol" is working to the point where it takes some of the compulsion to feel anxiety off. The confusion and anxiety is still there, but it is pulled back some by the drug. She wants to care, but now she's just too darn "chill" to care. I wouldn't want to see her on any higher of a dosage, as it's important to have Mom be as true to her core self as possible, I think.
The only other current frustration now is back to food, eating. Her appetite is fickle and Dad tries his best to create tasty, healthy meals. I pitch in when I can, make suggestions when I can, but short of me moving in there, I can't possibly be there and plan and organize every meal, every day, for them as well as my household. Besides, Dad likes to be in charge of all that.
Another rainy day, and today we should see Nurse M. and possibly the home health worker, too. Dad has an appointment with Dr. N. himself today, so I'll be over there with Mom while he goes to that.
Mom was pretty calm, for her. My observation is that the "haldol" is working to the point where it takes some of the compulsion to feel anxiety off. The confusion and anxiety is still there, but it is pulled back some by the drug. She wants to care, but now she's just too darn "chill" to care. I wouldn't want to see her on any higher of a dosage, as it's important to have Mom be as true to her core self as possible, I think.
The only other current frustration now is back to food, eating. Her appetite is fickle and Dad tries his best to create tasty, healthy meals. I pitch in when I can, make suggestions when I can, but short of me moving in there, I can't possibly be there and plan and organize every meal, every day, for them as well as my household. Besides, Dad likes to be in charge of all that.
Another rainy day, and today we should see Nurse M. and possibly the home health worker, too. Dad has an appointment with Dr. N. himself today, so I'll be over there with Mom while he goes to that.
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
No Cheese, Yuck
Thursday, March third, I spent as much time as I could with Mom, so that Dad could be freed up to do other stuff. When I greeted them in the morning, Dad was happy to report that he had caught up on some sleep the night before, and that Mom had gotten up and out of bed by herself, got her self to and on the toilet by herself, and only needed a little help afterwards with tucking in.
Mom greeted me with a big hello, she was dressed and sitting in her chair. She asked how I was, what I had been doing. Throughout the day, I noticed two things - the volume of her voice is stronger, more normal, and her walking and balance is stronger, more normal. I encouraged her to walk an extra loop every time we got up for a bathroom break. Anything, just to keep moving. Take a visit to the window, walk through the kitchen to put down a drinking glass.
She had eaten fairly decently in the morning, too. Their was a little plate of tiny apple bits and one cracker with peanut butter, as well as half a glass of Ensure, on the table next to her chair. I settled in, she asked me to read to her. It's been a couple of weeks since I've had that request, so I grabbed an old New Yorker magazine and found a neat short story called "Blue Roses" by Frances Hwang, and she seemed to listen to the whole thing. Dad drove down to his post office box during that period.
At lunch time, Dad made up a can of a "high fiber" chicken vegetable soup, and she reluctantly got up off the couch and sat at the dining room table, not without some protest. To distract her, I put out a plate of one of the bran muffins cut up into tiny pieces on the table, as well as some cranberry juice. When the soup was ready and served, I offered to feed her, and she didn't protest. "Faster," she said at one point, but not because she likes it, because she wants to get it over with. She ate a little more than about a quarter of a cup of the soup, and wanted out.
I ran home for a little while then. About half an hour later, Dad called to say that the auto body car place called and the fender on his vehicle was replaced and ready for pick up. I zipped back over and then he took off in the big, disgusting rental vehicle.
While he was away, I read some more from the current New Yorker magazine. I started the short story, but it was hard to follow, so we dropped it. I read a theater review. I read a short article about an architect and the tower apartment building he erected near the Brooklyn Bridge. I showed her the photo with the piece. She has told me in the past how she dreamed of being an architect, so I thought she'd enjoy that piece, and she said she did. Lastly, I read a longer article about an artist and the bar that she's run for many years in the Lower East Side. Towards the end of that article, Mom began to stir, and then she said, "Okay, that's enough. Don't you want to stop? It's been hours already!" I told her it hadn't been that long, and that I was going to finish the article anyway, so then she agreed to let me finish the rest of the article out loud. At the end, she admitted that she found it interesting.
After that, she uttered two words I hadn't heard come from her lips in quite a while.
"I'm hungry."
Aha! I leapt from the chair, raced to the kitchen.. she had given me some ideas what she might eat, but NO CRACKERS, NO CHEESE, YUCK. So, I took one slice of whole wheat bread and cut it up into nine small pieces, slapped some peanut butter on them, and added four halved green grapes just for good measure. She started eating, she liked. She asked for some of that "brown stuff," which means cranberry or prune juice, and she drank all that up. She even transferred to the chair to eat her snack.
Then Dad came home with his repaired vehicle, and their was a warm reunion, Mom dramatically relieved that he was home and the car was fixed. I stuck around a little longer so that Dad could take care of a little more stuff, and then I let her lay on the bed for a few minutes. She didn't stay long. By the time I left, she was sitting quietly in her chair again, and Dad was working at the dining room table. I never a heard a peep from them the rest of the night.
Mom greeted me with a big hello, she was dressed and sitting in her chair. She asked how I was, what I had been doing. Throughout the day, I noticed two things - the volume of her voice is stronger, more normal, and her walking and balance is stronger, more normal. I encouraged her to walk an extra loop every time we got up for a bathroom break. Anything, just to keep moving. Take a visit to the window, walk through the kitchen to put down a drinking glass.
She had eaten fairly decently in the morning, too. Their was a little plate of tiny apple bits and one cracker with peanut butter, as well as half a glass of Ensure, on the table next to her chair. I settled in, she asked me to read to her. It's been a couple of weeks since I've had that request, so I grabbed an old New Yorker magazine and found a neat short story called "Blue Roses" by Frances Hwang, and she seemed to listen to the whole thing. Dad drove down to his post office box during that period.
At lunch time, Dad made up a can of a "high fiber" chicken vegetable soup, and she reluctantly got up off the couch and sat at the dining room table, not without some protest. To distract her, I put out a plate of one of the bran muffins cut up into tiny pieces on the table, as well as some cranberry juice. When the soup was ready and served, I offered to feed her, and she didn't protest. "Faster," she said at one point, but not because she likes it, because she wants to get it over with. She ate a little more than about a quarter of a cup of the soup, and wanted out.
I ran home for a little while then. About half an hour later, Dad called to say that the auto body car place called and the fender on his vehicle was replaced and ready for pick up. I zipped back over and then he took off in the big, disgusting rental vehicle.
While he was away, I read some more from the current New Yorker magazine. I started the short story, but it was hard to follow, so we dropped it. I read a theater review. I read a short article about an architect and the tower apartment building he erected near the Brooklyn Bridge. I showed her the photo with the piece. She has told me in the past how she dreamed of being an architect, so I thought she'd enjoy that piece, and she said she did. Lastly, I read a longer article about an artist and the bar that she's run for many years in the Lower East Side. Towards the end of that article, Mom began to stir, and then she said, "Okay, that's enough. Don't you want to stop? It's been hours already!" I told her it hadn't been that long, and that I was going to finish the article anyway, so then she agreed to let me finish the rest of the article out loud. At the end, she admitted that she found it interesting.
After that, she uttered two words I hadn't heard come from her lips in quite a while.
"I'm hungry."
Aha! I leapt from the chair, raced to the kitchen.. she had given me some ideas what she might eat, but NO CRACKERS, NO CHEESE, YUCK. So, I took one slice of whole wheat bread and cut it up into nine small pieces, slapped some peanut butter on them, and added four halved green grapes just for good measure. She started eating, she liked. She asked for some of that "brown stuff," which means cranberry or prune juice, and she drank all that up. She even transferred to the chair to eat her snack.
Then Dad came home with his repaired vehicle, and their was a warm reunion, Mom dramatically relieved that he was home and the car was fixed. I stuck around a little longer so that Dad could take care of a little more stuff, and then I let her lay on the bed for a few minutes. She didn't stay long. By the time I left, she was sitting quietly in her chair again, and Dad was working at the dining room table. I never a heard a peep from them the rest of the night.
Wednesday, March 2, 2011
Morning Update From Dad
An email of morning updates from Dad, received a short while ago. I'm heading over now. Dad has to drive a half an hour away to pick up a rental car so he can have his car repaired.
She ate all but 4 pieces of the fried egg I chopped up into pieces, finished a glass of cranberry juice, took the 2 pills and finished a glass of Ensure (half bottle left over from yesterday).
I threw away the depends and gave her a second pair yesterday. She took off her black shirt last night before I could stop her and I had to put it back on again. That green t-shirt I got out might be a good replacement?
Maria actually called last night and I told her a little about the "new team." Mom was agitated in bed when she called so I put the phone in front of her and she said to Maria, "I've been shouting!". She said she had pain, like she often does, so Maria said to give her a Tylenol with apple sauce which I did. About a half hour prior I had given her an Ativan but it didn't seem to do much. I had to get her up after the Tylenol and let her sit in her chair. About 9:30pm I got her back in bed. She was still agitated off and on during the night.
In Like A Lion
Yesterday, Tuesday March first, Mom slept the whole day, in between bathroom breaks. I got there just as Dad was getting ready to leave for his appointment. The phone rang, and it was one of the occupational therapists from the agency, offering to come to bathe Mom, so I put her on the phone with Dad and they agreed to put it off. Not that Mom doesn't need a good cleaning up, but Dad was going to be gone for most of the day time, and this being her first time up, we decided it would be better to wait. Maria is still coming this morning, as well.
Shortly after Dad drove off in his car, the nurse we met on Sunday called, returning the call Dad had made the day before. She asked how Mom was and I told her she was just resting and not too bad. I thanked her for calling, and we will be seeing her later this afternoon.
I visited with Mom, and immediately she indicated that she wanted to use the bathroom. She is getting up better, though not without help. She's even able to stand alone, too. She strained a little to produce a decent sized bowel movement, then I watched her to make sure she wiped well. Dad has put on a pair of adult diapers on her, and she doesn't seem to notice.
The rest of the day was like that. Small drinks of water or juice, no eating, bathroom breaks, sleep. On the couch mostly, but once she wanted to sleep in bed. I helped her into that for a while, then she called out for me. "Do you want me to close the curtains, Mom?" "No, just make them straight!" When I closed them she was content.
Later she wanted me to lay next to her in the bed. I agreed to do that for a few minutes, but when I realized it created even more confusion for her (she started getting confused about where she was, where she lives, where I live, all kinds of stuff), I suggested we get up and go to the couch, that it would be less confusing for her. She agreed to that.
At one point I was able to get her to eat four sliced grapes. When Dad got home around three, she ate some peeled and sliced apple. "Do you want some cheese, Mom?" "NO!"
Two things we've noticed. She'll only eat when we feed her like a baby. Some of that is her sore hand, but how much is it the Alzheimer's and how much is it her? Oh, I don't know. The other thing is she has started to moan and howl when she wants attention. This is a sign of losing words, which does indicate she is slipping into Stage Seven.
We anticipate some improvement with the extra help, which will really get started in the next few days. They will help us decide when we can try the correct dosage of the Haloperidol, which may help with some of her obnoxious behaviors. I used to read to her, but now all she does is sleep. She used to watch movies a little. Her sleeping patterns are getting all turned around, too.
Let's see what today brings.
 |
| March 1, 2011 |
Shortly after Dad drove off in his car, the nurse we met on Sunday called, returning the call Dad had made the day before. She asked how Mom was and I told her she was just resting and not too bad. I thanked her for calling, and we will be seeing her later this afternoon.
I visited with Mom, and immediately she indicated that she wanted to use the bathroom. She is getting up better, though not without help. She's even able to stand alone, too. She strained a little to produce a decent sized bowel movement, then I watched her to make sure she wiped well. Dad has put on a pair of adult diapers on her, and she doesn't seem to notice.
The rest of the day was like that. Small drinks of water or juice, no eating, bathroom breaks, sleep. On the couch mostly, but once she wanted to sleep in bed. I helped her into that for a while, then she called out for me. "Do you want me to close the curtains, Mom?" "No, just make them straight!" When I closed them she was content.
Later she wanted me to lay next to her in the bed. I agreed to do that for a few minutes, but when I realized it created even more confusion for her (she started getting confused about where she was, where she lives, where I live, all kinds of stuff), I suggested we get up and go to the couch, that it would be less confusing for her. She agreed to that.
At one point I was able to get her to eat four sliced grapes. When Dad got home around three, she ate some peeled and sliced apple. "Do you want some cheese, Mom?" "NO!"
Two things we've noticed. She'll only eat when we feed her like a baby. Some of that is her sore hand, but how much is it the Alzheimer's and how much is it her? Oh, I don't know. The other thing is she has started to moan and howl when she wants attention. This is a sign of losing words, which does indicate she is slipping into Stage Seven.
We anticipate some improvement with the extra help, which will really get started in the next few days. They will help us decide when we can try the correct dosage of the Haloperidol, which may help with some of her obnoxious behaviors. I used to read to her, but now all she does is sleep. She used to watch movies a little. Her sleeping patterns are getting all turned around, too.
Let's see what today brings.
Monday, February 28, 2011
Somewhere Outside Of France
Despite our excitement over the prospect of professional help coming to the house with the Hospice agency, as well as Mom bouncing back a little bit from the over-medication incident, let's face it - she's deep into this disease and it's only getting worse.
As Dad reported in his comment on my post from yesterday, Mom rose early today and went out to the living room for juice and pills, but refused food, except for one or two bites of an egg. Soon after that, she wanted to go back to bed, and that's where she still was when I arrived a little after eleven in the morning. She called out, "Who is that?" when I entered the house, and once I took off my boots and coat and hat and entered the bedroom, she babbled quite a bit. She mentioned something about feeling like she needed to get back home, and finally I just went along with it, asking, "Well, where are you then?" And she replied that she was somewhere outside of France.
After a while, we got her up to the chair, but it wasn't long before she wanted to be on the couch. She would not eat, but she did drink Ensure and water. There were many trips to the bathroom for peeing through out the time I was there, and a little bit of walking around. She did want to have the beautiful bouquet of flowers my sister brought up moved to the dinning room table. She seemed intent on cleaning off the marble table that is next to her regular chair today. Usually it's cluttered with tissues and napkins, toothpicks and water glasses.
She was very cranky and verbally combative today. She complained a lot about her right arm. She continued to say things that made no sense, only to her. We try our best to understand what her true meanings are. It's difficult.
Dad was depressed today. The snow was falling all morning into the afternoon, switching over to a light freezing rain for the last hour or two. We couldn't go anywhere. He's worried about getting enough sleep tonight (and he didn't sleep very well last night), because he's got the appointment with the elder care lawyer tomorrow in the city an hour away. I'm a little worried about being alone with her for the three or four hours he will be away. It's possible we could have someone from the agency come up to assist me with her tomorrow, but it's not confirmed yet. I can probably handle it alone, but you never know where the disease may make her turn next.
And she's not eating. We weighed her during one of the bathroom breaks, and the scale stuck at one hundred pounds. Perhaps the coming week will feel more hopeful, but all in all, this disease blows, and it hurts like hell to see such a beautiful, intelligent woman become so helpless and pathetic.
As Dad reported in his comment on my post from yesterday, Mom rose early today and went out to the living room for juice and pills, but refused food, except for one or two bites of an egg. Soon after that, she wanted to go back to bed, and that's where she still was when I arrived a little after eleven in the morning. She called out, "Who is that?" when I entered the house, and once I took off my boots and coat and hat and entered the bedroom, she babbled quite a bit. She mentioned something about feeling like she needed to get back home, and finally I just went along with it, asking, "Well, where are you then?" And she replied that she was somewhere outside of France.
After a while, we got her up to the chair, but it wasn't long before she wanted to be on the couch. She would not eat, but she did drink Ensure and water. There were many trips to the bathroom for peeing through out the time I was there, and a little bit of walking around. She did want to have the beautiful bouquet of flowers my sister brought up moved to the dinning room table. She seemed intent on cleaning off the marble table that is next to her regular chair today. Usually it's cluttered with tissues and napkins, toothpicks and water glasses.
She was very cranky and verbally combative today. She complained a lot about her right arm. She continued to say things that made no sense, only to her. We try our best to understand what her true meanings are. It's difficult.
Dad was depressed today. The snow was falling all morning into the afternoon, switching over to a light freezing rain for the last hour or two. We couldn't go anywhere. He's worried about getting enough sleep tonight (and he didn't sleep very well last night), because he's got the appointment with the elder care lawyer tomorrow in the city an hour away. I'm a little worried about being alone with her for the three or four hours he will be away. It's possible we could have someone from the agency come up to assist me with her tomorrow, but it's not confirmed yet. I can probably handle it alone, but you never know where the disease may make her turn next.
And she's not eating. We weighed her during one of the bathroom breaks, and the scale stuck at one hundred pounds. Perhaps the coming week will feel more hopeful, but all in all, this disease blows, and it hurts like hell to see such a beautiful, intelligent woman become so helpless and pathetic.
Saturday, February 26, 2011
Saturday's Small Improvements
Perhaps the drug in her system is finally getting out of her blood stream?
All I know is, she was a lot more alert this morning, in between dozing in the chair. Just got back from lunch with them. Dad ran down town and got some pre-made frozen lobster bisque, along with a few other foods. We had discussed it with her earlier and she said she would like to have some of the bisque. When he got back with it, she was anxious to eat it. It took a while to heat it up. She complained of a headache, so we gave her a Tylenol.
She had a small bowel movement in the morning, and peed a few more times. One of those times was a false alarm. Just before lunch, she thought she needed to go poop again, but nothing came out. She wanted to sit at the table, but the bisque wasn't ready yet, so Dad gave her a small plate with some cheese and crackers and a couple of sliced grapes on it.. and she ate them! And swallowed them!
Then she got anxious, so I helped her up again, and we walked around a little, and finally the bisque was done. She gobbled up a good portion of it, then proclaimed she was done. Back to her chair and napping.
She's still frail as hell, speaking and walking feebly, and confused about stuff, but still, there does seem to be a bit more oomph in her today. I've decided that I can play my gig tonight, especially because my brother and sister will be around tonight to assist Dad in her moment by moment care. She is still a little sniffly off and on, but I managed to sneak a packet of Emergen-C vitamin C powder into a glass of cranberry juice, and she drank all that up.
I left her dozing in the chair, post lunch, and Dad sorting mail. I just saw my brother drive by, heading for their house. I can rest for a little while myself now.
All I know is, she was a lot more alert this morning, in between dozing in the chair. Just got back from lunch with them. Dad ran down town and got some pre-made frozen lobster bisque, along with a few other foods. We had discussed it with her earlier and she said she would like to have some of the bisque. When he got back with it, she was anxious to eat it. It took a while to heat it up. She complained of a headache, so we gave her a Tylenol.
She had a small bowel movement in the morning, and peed a few more times. One of those times was a false alarm. Just before lunch, she thought she needed to go poop again, but nothing came out. She wanted to sit at the table, but the bisque wasn't ready yet, so Dad gave her a small plate with some cheese and crackers and a couple of sliced grapes on it.. and she ate them! And swallowed them!
Then she got anxious, so I helped her up again, and we walked around a little, and finally the bisque was done. She gobbled up a good portion of it, then proclaimed she was done. Back to her chair and napping.
She's still frail as hell, speaking and walking feebly, and confused about stuff, but still, there does seem to be a bit more oomph in her today. I've decided that I can play my gig tonight, especially because my brother and sister will be around tonight to assist Dad in her moment by moment care. She is still a little sniffly off and on, but I managed to sneak a packet of Emergen-C vitamin C powder into a glass of cranberry juice, and she drank all that up.
I left her dozing in the chair, post lunch, and Dad sorting mail. I just saw my brother drive by, heading for their house. I can rest for a little while myself now.
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.
Friday, February 25, 2011
Waiting
Just got back from being over there for a couple of hours. Dad had got her in her chair, she drank some juice and took some pills but that's about all. She's been dozing in her chair this whole time. We put on the light classical music, and I also read a few poems to her, even though she did not respond.
No word yet from the hospice people. Snow is coming down hard today. Dad is hanging in there. He posted on the Alz.org forum, in the caregivers section, about our experience with the over dose and the decline into what appears to be Stage 7. A few people replied, saying to keep her hydrated, keep in touch with the doctor, and that nobody knows for sure if this leads to the end. Sometimes they bounce back, other times they don't.
So, we are in a waiting zone for now.
No word yet from the hospice people. Snow is coming down hard today. Dad is hanging in there. He posted on the Alz.org forum, in the caregivers section, about our experience with the over dose and the decline into what appears to be Stage 7. A few people replied, saying to keep her hydrated, keep in touch with the doctor, and that nobody knows for sure if this leads to the end. Sometimes they bounce back, other times they don't.
So, we are in a waiting zone for now.
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