Monday came with Mom being roused and encouraged to shower. She refused. Many attempts were made, but she fought. She ate some yogurt, after dressing and stayed in her room and ate lunch. She complained of intestinal troubles and they helped her with this. Later, when the masseuse came Mom was eating lunch. They chatted and finally Mom began to warm to the idea of the massage. Alli was able to get her on the floor and Mom began to relax as they talked. This was wonderful. Alli was attuned to Mom’s discomfort and she worked on the areas where Mom stated she was experiencing the most difficulty. We spoke about the possibility of her coming twice a week, but we’ll look into that later.
Also, her doctor’s office phoned to check up on her after Friday’s incident. We had a very nice chat.
I also arranged for Mom’s Service Plan Meeting on Wednesday where we will meet with the team that will help with her needs and services as she continues to decline.
She was put on Miralax and after a short time, this actually cured the problem. Her constipation dissipated and this one problem was solved.
Tuesday, Mom was incontinent after she had dressed. When Leddy stated she needed to change her clothes, Mom was very upset. She changed and went straight to bed. Later that day, while Morina was walking her, Mom had another accident. This was upsetting to her, and they gave her a sponge bath and Mom went to bed. She didn’t eat much that day, though.
Wednesday, my brother, his wife, and I went to the service meeting. It was very helpful. We talked about Mom having a UTI and how they needed a sample to figure out which bacteria was causing it - it does make a difference, as Mom may have had a different strain and the empathic treatment may have helped, but not cured what she was suffering from. Also, we began the discussion of hospice and received more information about this.
What we also learned was that Mom had truly gone way away from what I had believed. While I thought she was doing fine with BINGO and the like, I discovered that she was having troubles with playing at this time. She also had difficulties with choosing her prize. This told me she had gone further down the slope than I had hoped.
We also began the discussion of hospice and received much more information about it, while also making sure we had her DNR and all the pertinent information/forms ready. They gave me a form I didn’t believe I’d been given before, and I took it home to fill out - something for them to post in her room to alert the medics should they be summoned. This will inform them of her wishes.
Apparently, Mom has been switching from her bed to her recliner in the night, and this may be a demonstration of her circadian clock being completely out-of-whack. It may also explain her extreme sleepiness during the day, but who really knows how this dementia truly works.
Mom had wet the bed that morning and had eaten nothing. She wasn’t drinking anything, either. This is alarming as she really hasn’t ingested very much in the past 5 days. So, I was able to feed her some chicken, brussel sprouts, yogurt and some juice, but it didn’t add up to much. She was in a very good mood, but it was one of semi-reality. She was joking with us and quite charming, but she remained in bed under a blanket not wanting to get up.
On Thursday, they were able to get her up, and two of them took her into the shower and scrubbed her down. Mom was very angry at first, but during and afterward she was glowing and singing praises of how good being clean really felt. Victory! Finally! She had a full shower after a little over a month!
She did go out and eat some breakfast, but then retired to her room and went back to bed.
This same day, her doctor phoned me to check in. I had received a call the previous day about bringing Mom in for an appointment - they stated they would be willing to meet with us after hours, if necessary. The doctor told me that from the information I provided, and from what she understood (from Mom’s progression and her knowledge of the disease - which she has dealt with many times) that the UTI was only a small part of the problem. She stated that Mom was truly slipping downhill and that she would come in and pay Mom a visit sometime in the next two weeks as she didn’t believe it would be good for Mom to travel and walk in. Now, how many doctors would be this wonderful?
I told the doctor that from the patterns of Mom’s changes, that I was thinking that we might be looking at Mom losing her battle sometime within the year, or so. She remarked that I was being too generous, but we could be wrong. Mom might suddenly spring up and begin eating regularly for four months! but this was doubtful. She stated that it was quite common with LBD patients that they simply stop eating and drinking and this was the cause of their demise. The brain stops triggering the need that tells them to eat and drink while making them believe they have no such needs. This was a slap of reality. So, with that I asked that I be alerted when she paid her visit so I could also be present.
Also, the doctor remarked that we may be looking at commencing with hospice services at that time. This is actually a relief, as it means she would be receiving more attention and services and it will also be a support for us, as well.
I phoned later and discovered that Mom was still in her room, in bed, and had eaten nothing but a tiny bit of breakfast. She was in bed and wasn’t willing to come out. This is becoming more and more the norm.
Friday morning, Mom was still in bed wearing the same clothes from the previous day. She had not eaten since breakfast, Thursday. She complained of back pain, and she was unwilling to go for a walk or do much of anything else. She was given her pain medication, but that didn’t seem to help much.
Later that morning, Jean came for a visit. Mom still wouldn’t arise, despite Jean’s attempts to encourage her. Jean was told that Mom isn’t reading her paper, anymore, but just scans it. The only times Mom got up was to use the loo.
She hadn’t had any accidents staff knew about, but when Jean went to use the facilities, she found a very wet pair of undergarments in the wastebasket. She snuck them out and told the staff they were in Mom’s room in the basket near the door. This reinforces my hunch that Mom tosses them out to avoid embarrassment.
At one point, Morina joined Mom while she was in the loo. Mom was shocked and said, “Morina! What are you doing here?!”
“I’ve come to help you change your clothes, Norma.”
Apparently, as she reported to Jean, this was the only way they could get her to change her clothes.
Soon, they served Mom lunch, and with Jean’s egging her on, she did consume the shrimp salad and an ice cream cup. That was all her nourishment for the day. When Jean left, she was a little upset that Mom had declined so far so fast. It is rather depressing.
On Saturday, Mom was still abed and wearing the same clothes from Friday. She didn’t want to eat any breakfast and complained that her body was aching all over, which made it difficult to sit up. She did consume water and some juice, though, which is good. However, they were not able to get her to roust herself and change her clothes. She did eat about 80% of her lunch, then went back to bed, and didn’t show signs of getting up until the next morning.
Earlier, it was her beige pants she demanded to wear for days/weeks at a time. Now, it’s her light blue pants. However, we do know Mom looks fresh and clean (as does her garb) when we come to see her.
Her attitude has been light and breezy, and she seems quite chipper, aside from the pain. She does slither, rather, on the bed to move about, and I have a hunch she takes pleasure in the moves.
Sunday came, and Mom was in a good mood. Leddy came in and helped her dress. Then, while Leddy stepped out, Mom took off her shoes and refused to put them back on. She sat down in her recliner and refused to budge. She also refused breakfast.
When I arrived, Mom had her shoes on (much to Leddy’s surprise) but was resting in bed. She was rather groggy. It took some doing, but I managed to get her to rise up and come out for lunch. At first, she stated she needed to remove her shoes, first, but I convinced her it would be improper and unsafe. After nearly 30 minutes of cajoling and thinking of new ways to prop her up, she rolled over to go to the bathroom.
Once she was up and out of the loo, I escorted her to her seat in the dining room. They brought her lunch (baked ham, yams with marshmallow sauce - ugh!, and zucchini something, finally some spice cake with whipped cream). She took her pill with juice (which she drank about half of by the end of lunch) and began to eat slowly and deliberately. I noticed that either the knife wasn’t very good, or her strength was lagging, as she cut the meat. I offered to do it for her but she politely declined. She ate a little over half her lunch, no dessert, and was ready for bed.
I noticed then, as she stood, that her balance wasn’t quite right. I took her by the hand and led her to her room. She once again visited the facilities. Once out, she bent over the bed, stuck. She hadn’t the strength to get in easily. I helped her, once she managed to sit on the bed, by lifting her legs up and over. She was lying in a “V” shape, but stated she was very comfortable and wasn’t about to move.
Her voice is softer and she isn't always on point with her comments. When I asked how her lunch was, she began to tell me about the charges for travel which segued to many other topics. The best I could do was to nod and agree.
I've also learned that instead of asking if anyone visited, to ask specific questions about visits, or trips; this triggers her memory, although not always. Otherwise, she simply states it never occured or goes off into Lalaland about something unrelated.
I had bought her some skin creams last Christmas, and I took out a tube and began to put the cream on her one arm that was easily available. She liked it. Then I did the same to the other hand, as I couldn’t manage to get her arm below her body.
I then put on some Brahms on her cd player, and allowed her to drift off.
She has lost weight, as well as strength. Another resident just passed who did the same thing. I’m not sure how long she will be able to manage at this rate, but the best we can do is to humor her and let her know we love her.
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