Random Observations

The pattern the last few days, from my perspective, seems to be: Mom rises, has her pills and juice and nibbles on some breakfast. Dozes in chair most of the morning. Has lunch. Dozes some more. We try and get her to participate in little activities (a walk, some exercises, yesterday we took her for a little drive in the car), then more dozing, then at four she takes her pill, then she becomes agitated and confused for a while. This is when I usually go home.

March 28, 2011

Dad has been amazing. We still need to work on creative food ideas. Somebody needs to write a recipe book for people who are caregivers of people with A.D. Don't look at me, I have a hard enough time coming up with ideas for my own meals.

When Mom gets agitated (which she was very much yesterday, she was depressed and snappy), I believe it boils down to this: she's pissed that she can't communicate or do anything, and she's pissed that she is suffering from this disease.

And I don't blame her one bit.

Persistence And Patience

To be a successful care giver to a person with Alzheimer's Disease, a huge challenge is learning how to read what the person is trying to communicate to you. For what the person says and what the person means is not always in line with one and other.

As an example, just a little while ago, I was sitting in the chair reading, while Mom was laying on the couch, "watching" a movie on Turner Classic and Dad was outside taking a walk. All was quite, until I heard Mom moan, and begin to struggle to try and get up.

"Do you want to get up now, Mom?" I asked.

"Yes."

She grimaced, then she said, "My arm hurts!"

I told her we'd ask Dad if it was okay to give her a Tylenol for the pain when he came back from his walk (she likes to have his approval for this, and I figure it's okay to wait), and I helped her out of the couch. I asked her where she wanted to go, and she decided on the other couch. We decided to sit up in the other couch, instead of laying down. The movie was still on, I settled back into the chair to continue reading, and I told her to keep watching the movie.

She moaned. I asked her if she wanted to continue watching the movie, and she said that she did, but she wanted to watch the other movie, too. She continued to ramble, words coming out that made no sense, and as she went on, she began to get frustrated, and started to weep a little.

So, this is where I had to ask more questions, to find out what she really wanted. Do you want to watch the movie? ("Yes.") Are you comfortable? ("Yes.") Does your arm still hurt? ("Not too bad.") Then she tried to communicate some more, and again, the words made no sense. This is when I said to her something like, "I understand you're trying to tell me something, and you are having a hard time expressing what you really mean. Try not to get frustrated, Mom, let's work this out together."

Finally, it dawned on me what she wanted me to do.

"Do you want me to read to you some more?"

"Yes! I want you to read to me!"

Persistence and patience paid off. I turned off the television, and picked up where I had left off earlier in the day in the book "Little Women," by Louisa May Alcott.

Other times, short-term memory works in your favor. At lunch today, I prepared them both little sandwiches with little sides of fruit, chips and cherry tomatoes. They sat to eat, I did the dishes, then joined them at the table. Mom ate fairly well, for her, then she began to push her plate away, fussing. I asked her to finish chewing before she rose, but no, she wouldn't have it, and she began to say something like, "Don't be like THEM! Let me go!" Agitation rose again.

So, "No problem, let's get up" and we helped her rise. While she was still gaining her balance, I asked her if she'd like to wash down her mouthful of food with her drink. "Yes." She drank. Still standing, I offered her a grape. She ate it. Then a chip. Then she wanted to sit, only at her chair. I helped her to her chair, then brought the plate of food over. I was able to feed her a few more bites of everything with her sitting in her chair. Persistence and patience paid off again.

I noticed Brian, the physical therapist, used the same techniques with her today during his visit. He worked her through a "vigorous" routine, and at times she'd complain, saying she couldn't do it, wanted to stop. Then he'd persist, "Just one more." "You can do, you're stronger than you think." "Great job!" And she'd finish the exercise. Persistence and patience.

Sometimes, you just have to let the person stumble out the words, even if they make no sense, and try and feel the emotion behind the words. If you have any sense of intuition in you at all, you'll get the notion of what the person is trying to say. It could almost be likened to trying to communicate with a person who speaks another language. You listen to the emotion, you read the facial expressions, the hand gestures, read the tone of voice. You apply that to the situation that you are in at that moment. You search and reach and try to find the true meaning behind the words. This requires persistence and patience.

In the end, though, when you do realize what the person is trying to communicate, there is such a great sense of relief and accomplishment. And nothing feels better than letting the person know that you can understand what the person is trying to tell you. The stress is momentarily relieved, and the person suffering with this horrible disease does not feel so misunderstood. For that one moment, the person can feel normal again. That feeling is such a gift for both of you.

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.

Short Entry

I didn't spend a whole lot of time with Mom over the weekend.

Dad's been writing down journal-esque entries in the spiral bound notebook I brought over... jotting down random things like what has happened over night with sleep (or lack there of for him) and trips to the bathroom, as well as what Mom may or may not have eaten.

From what I can see, Mom is back to a "baseline" of sorts, where she can walk fairly well (though I still tend to aid her, as she can be wobbly), her confusion is lessened, and she eats sporadically. Two things she does do a lot of is drink fluids and sleep. Yesterday, she slept throughout most of the day, while snow fell all afternoon. Finally, I got her up and had her walk around the house a bunch of times.

Yesterday, we had a short visit from a home health aid, Linda, and today we should see Nurse M.

I wasn't feeling well yesterday.

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.

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.

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.

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.

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.

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.

Support All Around

When I arrived yesterday morning, Maria was kneeling by Mom, who was sitting in a chair, and plucking a few hairs off her chin. Mom was all cleaned up from her bath, and the two were very quiet and peaceful. Let me just say here that I think Maria is very special. She has empathy and genuinely cares about the well fare of others, especially seniors with dementia and Alzheimer Disease. She goes above and beyond, and for that, I am inspired and grateful.

As Maria was finishing up, Dad came up and expressed his concern about Mom's lack of spunk, but Maria did not think we needed to worry. She did think, though, that we needed to bring up the rash on the front part of Mom's leg, just above the ankle, to the nurse again. Nurse M. had told us to apply Cortezone on it, which I have been doing once a day, but Maria seemed concerned that it was still not better.

After she left, Mom sat quietly for awhile, and Dad went to the post office. When he came back, he was excited to show us the giant box he received. It was the bed bar he ordered, and perfect timing, because Brian, the physical therapist who suggested we get it, was due to arrive at any moment. Dad and I took it out of the boxes, and when Brian showed up, the first thing we did with his help was strap it on the bed. Once it was on, Brian showed Mom how to use it. He then did a bunch of exercises with her. She really seems to respond well to him, and she seems to enjoy doing the little routines, counting out loud. It is really cute how she sometimes skips numbers ahead. Well, cute might be trivializing her condition, but sorry. It just is.

After the P.T. finished his exercises with Mom, he wrote up his report on his little computer, and told us that the next time he comes, he'll have a little routine and sketches to leave with us so that we can help Mom with strengthening exercises in the future. Then I left and drove down town to the little community center to attend the care-givers support group. Their were seven other women in attendance, in addition to the woman who runs the group, and almost everybody is a caregiver for somebody with Alzheimer's or dementia. The session involved a lot of sharing, a little bit of crying, and plenty of empathetic support.

I stopped at the store on the way home and picked up a few groceries for my household, as well as some cans of organic soups, bananas and a little potted spring plant for Mom and Dad, then went home to rest for a couple of hours. At five forty-five, I drove back next door and stayed with Mom so that Dad could attend his board meeting at the church. Mom was real mellow and sat in the chair while I did their dinner dishes and a few other little things, then I helped her get settled on the couch around six forty-five, and that was were she stayed until almost nine at night, when Dad got home. She slept for most of the time.

Just before Dad got home, I roused her from the couch and suggested we start getting ready for bed. I wanted to get as much done as possible before Dad got home, because I knew he was tired. However, he got home before we could begin the ritual, so I let him take over, for her sake. As I was putting on my boots, I could hear them in the bathroom, and Dad lamented, "How am I going to take this sweater off?" (It was a thick blue turtle neck sweater, but still fairly loose.) When I entered the bathroom to assist, Mom was so tired and defeated, she just started crying like a little baby. No tears, just whimpering. It was so sad. We told her it was okay, and somehow, Dad and I managed to pull the sweater off her head. I kissed her on the cheek and told her it was okay, and that I'd see them both in the morning. She stopped crying and said good night.

Dad just called, and we'll have a visit from the occupational therapist, Gwen, within the hour.

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.

How Lucky We Are

I got over there close to eleven in the morning today, and Mom greeted me loudly from her chair. "Hi Kate!"

She had eaten a little for breakfast, and we had a big day planned. Three visits from the hospice agency.

I started to read an article to her from an older issue of the New Yorker about the writer George Elliot, and towards the end, we received our first visit from our primary case worker, Nurse M. around twelve fifteen, shortly after Mom ate a few bites of toast with bacon slices on it that Dad had prepared for her. Nurse M. checked her ankle. Both issues were looking better (a rash on the front part of her leg just above the ankle bone, and a bed sore on her ankle bone.) She checked her vitals (BP good, pulse good) and checked her temperature (normal.) She asked a few questions, while Mom wandered from couch to chair to walking about, and then she left, saying she'd call on Monday morning to set up another visit for that day. She also called Mom's primary doctor, Dr. N., to inquire about when it would be okay to start up on the Haloperidol drug. The doctor's assistant did call back later in the afternoon to say that the doctor thought it would be okay to start her up on that Saturday at two in the afternoon.

We had about half an hour or more before our next visit. I settled Mom down again on the couch, and I finished up the George Elliot article, and soon enough, our next professional walked in the door, the physical therapist, Brian, a seasoned, young man with a wonderful and warm bedside manner. He got right down to business with Mom, evaluating her mobility and the space she lives in. Mom became quite animated with Brian, and he was very charming and understanding with her busy bee like urges. When she proclaimed that all she wanted to do was lie in her bed and go to sleep, he told her that that was fine, and followed her to the bedroom and observed how she got in the bed. Then he showed her (and Dad and me) a few exercises, testing her strength in her legs. She did quite well, and seemed to respond favorably to his inquiries. He also recommended we look into purchasing a handle for her side of the bed, which we could purchase on line. It's a rail we can easily add to the bed to aid in her mobility in getting in and out of bed. He was great, and will come back a week from today.

We had another period of respite, where Mom retreated back to the couch and I read aloud to her some more from New Yorker magazines. Finally, our third visitor arrived, a home health aide named Jackie, and she was all business and was ready to give Mom a sponge bath. Mom protested quite a bit, but eventually, she subsided and did quite well. I wasn't one hundred percent thrilled with Jackie, but, she was professional and very nice. Mom, again, was very animated with her and mentioned that she looked familiar to her. Mom got sponge bathed, a new shirt and panties (well, adult diapers), and a little more "get to know each other" conversation, and then Jackie left.

Dad had left to run some errands shortly after Jackie showed up, and after Jackie left, I let Mom settle back into the couch for a well deserved rest. I read aloud a short article from the New Yorker to her, a recount of a man's time spent in a private school in Wales when he was stealing books from the library, and when I finished, I saw that Mom was sleeping, so I just sat there reading alone and let her rest.

Finally, Dad came back with fresh groceries and pills. Mom and I put away the food, Dad took his pills and retrieved wood from the woodpile for tonight's fire in the wood stove, changed his shoes, and then I insisted that he sit with her quietly for awhile on the couch. Then, I was able to leave. I got home a little after four-thirty. A long day for me, and it's not over yet. Phone calls and band business, dinner and visit from my brother, who is coming up tonight out of the kindness and compassion in his heart for his mother. Sister wanted to come up, too, but was too pressured with work obligations, but we'll be just fine. It's probably for the better this weekend anyway. Mom has really been expressing massive confusion the last few days about where she is, where she's from and where she's going. Also, who lives there, where I live, where my siblings live.

Despite all that, she is much more mobile and verbal, and their are small moments of clarity and understanding for her. The only really, really sad part for me today was when at one point, just she and I alone, she asked me, "Am I going to be this way for the rest of my life?"

How could I answer that question? I decided to just go with the truth, counting on her short-term memory to erase my answer. "Sadly, Mom, yes, you will be."

After a long pause, I added, "But that doesn't take away how much we love and care about each other, and how lucky we are to have that."

"Yes," she replied.

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.

Busy Day

Yesterday, we had the weekly visit from Maria. Mom got all cleaned up and in fresh duds. She had been wearing the old black "Ireland" tee shirt, panties, socks and the purple bathrobe for an entire week now, so it was nice to see her in clothes again. Maria did her usual wonderful job working with Mom. Maria told me that when Mom yells, to tell her quietly not to yell. She is always full of wonderful practical pieces of information and suggestions, such as offering Mom a dollop of peanut butter on a cracker, or tuna on a very small piece of bread.. anything to get a little bit of protein in her.

Dad had left to go drop off his car at the auto body shop, and Maria stayed on a bit longer than she needed to, but that's how helpful she is. After Mom was dressed and pampered, we managed to get her to sit on the other couch for awhile, in a somewhat upright position.. but nothing lasted for long. She was terribly disorientated all day... expressing a lot of confusion about where she was, where she was going, how we got here.. who we are.. At one point, Maria told me she thought Mom was heading into the final stage, stage seven. I told her I agreed.

After Maria left, one of the therapists called for an initial meeting with us. Though I wasn't sure if Dad was going to be back yet, I agreed for a one o'clock appointment. Luckily, Dad did arrive home a few minutes before one, and not a moment too soon, because Mom was beginning to get really agitated at that point. She made a big deal out of Dad coming home. He has been tied up lately, not to mention exhausted.

The new occupational therapist arrived a little after one, Gwen, and she was wonderful, patient and calm. At this point, Mom was really agitated. Up and down and babbling lot's of things. It's heartbreaking to see how confused she has become. We tried having a four-way meeting in the living room, but eventually, Gwen suggested she and Dad go somewhere else. They went into the bedroom and talked while I kept Mom occupied. She just could not sit still, yet all she really wanted to do was sleep, to get away from the confusion.

After Gwen left around two-thirty, I ran home for a half an hour. When I got back, Mom and Dad were sitting quietly at the dining room table eating a bran muffin. Maria had brought over four bran muffins and a whole lemon meringue pie (of which we managed to get a few bites into Mom while Maria was there.) By this time, Dad really need to rest a bit himself, so again, I tried to keep Mom occupied so Dad could have a few moments to himself.

Then, a little after three, our nurse showed up. Mom seemed happy to see her, despite her exhaustion. She asked some more questions, and I pointed out the rash and the sore on Mom's right ankle bone that Maria had discovered. Nurse M. put a salve and a bandage on the ankle bone, and suggested some cortisone cream for the rash. Dad was able to bring up that Mom's sleep patterns are shifting and keeping him awake. Nurse M. suggested we try and keep her more active throughout the day, and to not be shy from giving Mom two of the Ativan (Lorazepam) sedative's instead of just one.

Nurse M. left and plans to come again on Friday. Friday we will also meet the physical therapist for the first time. Today, Thursday, nobody is coming, so I plan on getting over there as soon as I can to keep Mom occupied as much as I can. She did spend a lot of time sleeping on the couch when I stayed with her alone on Tuesday, so that could explain some of the irregular sleep patterns.

After Nurse M. left, around four-thirty, I stayed with Mom a little longer so that Dad could just sit quietly for a moment. She is walking better now, so we walked a bit, sang our "Left left" march, and I brought her into the kitchen to help put away the dishes from the dry rack. I gave her a napkin and told her to wipe up around the counters. She did all this without any complaint. We looked out the front door at the snow and ice melting. We walked around the first floor. Finally, we waked by their bed and she asked me to let her lie down there. I decided this wouldn't be so bad, so up she went, and when I tucked her in under the blanket she said to me, "You don't know how grateful I am for this."

Indeed, for us, too. She stayed quiet for a while, Dad came to from his little snooze in the chair, and I headed home. I told him to call if he needed me, but I never heard from him. Hopefully, they both got a decent night's rest.

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.

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.