Updates-Cabin Fever, etc.

Howdy everyone,

Thought I should write with some Gram news today. A couple of things have been happening.
After I wrote last time, Mary, Tom and I talked about the effects of the memory meds on Gram's functioning. We thought they maybe caused all the extreme sleepiness, loss of balance, and general drop in function. As the disease progresses, it seems like a teeter-totter: now that she is farther along, the memory meds seem to make her groggier than they once did. We recently did a trial of Aricept, but Gram could barely walk while taking that, even at a very reduced dose. We discussed the issue of quality of life vs. longevity--what was the right thing to do? We decided to have a trial period of having Gram off the memory meds, to see how she would be. So far, she has been more 'present'. In the last few days, she has admitted to being 'hornschwoggled' several times! She had  previously quit such little personality expressions. She is back to often doing a quick hula dance when I sing the hokey-pokey to get her to 'turn yourself around' for sitting. Ha! That's fun. She has not said her famous toast lately, but who knows? It is just great to see some of her old self. Gram is not sleeping all day as she was before, so we have taken her back to DayBreak. She is able to participate there somewhat, and they say that her functioning level is appropriate for being there.
We would like the opinion of the rest of you siblings as to what you think is the right thing to do. Post on this blog, so we can get all of our input in one place, if you can-vote for keeping memory meds, or not keeping them.

The next issue I want to tell you about is that Gram has had another fall. I did not hear her get up, and found Gram sitting on the floor in her bathroom at about 4 AM Friday morning. This time, however, she seemed really confused. She was not able to do our 'get up onto a chair' technique of getting on all fours, then climbing onto a chair I bring. We tried for about 45 minutes, but it was beginning to stress her out. I could have called Mary to help me, but thought I should call the hospice nurse to get Gram assessed anyway, so why wake up Mary when the nurse would help me get her up, too? I called hospice, and they sent a nurse, we got Mom up into a chair, and assessed her. It turned out that nothing was broken! Yay! We gave Mom a pain pill just for preventive measure. I went to work, as I had a day of subbing lined up, and she went to DayBreak, where she had a pretty good day. They said that she napped for a couple of hours in the afternoon.

We were tired last night. Gram was up twice in the night, but went to the bathroom and then right back to bed. We did not get up until 10AM! Gram still seems a little tired. About a half-hour ago she began to get short of breath again. I tried the calming techniques, but they did not seem to help, so I gave her an Ativan. She was determined to stand up and walk then, and she was shaky at it. I took her to her bedroom, thinking she could sit in her rocker for a while. She headed for the bed, so that's where we went. I will see how she is doing in a little while. We have to not let her sleep too much in the daytime, or she can't sleep at night. Maybe she is still getting over the stressful fall incident.

Another issue, just so you know the whole picture, is that Gram is continuing to lose weight. She is down to 175 from 205 last spring. We are not sure why this is happening, as she seems to be consuming about the same amount of food. We have had to chop or grind up meat for her, as having to chew a lot exhausts her. I make soup fairly often because it is easy for her to eat, and she seems to like it. I can run that through the blender if we need to, and call it 'creamy chicken soup', and it does not look too weird. On the other hand, some foods do not look very appetizing when ground or pureed. In addition to changing the texture of some of her foods, we have added Boost to her daily intake. Hospice, bless their hearts, sent us 2 cases after I told them of the weight loss. Gram likes it. I even used the vanilla on her oatmeal, instead of milk, and she ate all of it.

There might be something else going on with Gram that is causing her weight loss. At the present time, we are not looking for that. All the procedures, X-rays, scopes, etc. would be so difficult for her. In addition, I do not think we want to put her through a surgery to correct anything we might find, would we? The last time she had surgery, when her knee was replaced, she had a very difficult time recovering from anesthesia. Mary and I felt that she lost a lot of cognitive functioning at that time...it was more like a huge 'dropoff' instead of the gradual loss we had been seeing. So there is the potential for that to happen again, if she has a surgery. I doubt a surgeon would agree to work on her, as she is just not in great health to begin with.
If any of you have any comments on how we are doing things, please weigh in, either here or to our personal emails. We are all in this together, even though we are separated by many miles, in some cases. If you have an opinion or suggestion, please let us know about it.

For this next week, Gram and I will go to DayBreak on Monday for a few hours. I have volunteered to do some valentine art with the participants.  Our hospice social worker is coming on Tues AM to give me some ideas on activities for adults with limited cognitive functioning. I ran out of those, as Gram either could no longer do the ones we had been doing, of seemed uninterested. I have a sub day tentatively lined up for Wed., also, if Gram is doing OK then.
 I love the hospice people. They have been so supportive; I am really glad that the DayBreak nurse suggested we give them a call.

Okee Dokee.....that is about it for now. Hope I covered all the bases. If you want things to be done differently, please email, blog, or call us, so we can talk about it.

We love you,
Annie