I am just not sure how to assess the day, but I am sure I don’t like it. The signs pointed to the hallucinations firing up last night. She was restless at first. The hallucinations fired up between 3am and 4:30am. Then she slept for a while.
She did try to get up early, but when I took her to the bathroom, she fainted. I had to put her back into bed and she slept for a while. There has been a pattern that has played itself out all day. When she is lying down, she has often been talking apparently about or to the hallucinations. I described that before. She often has her eyes open when she lying there talking.
When she became alert enough to sit up, usually wanting to go to the bathroom, after a short time her eyes would slam shut and it would cease to be possible to communicate with her. She simply could/would not respond. I had to put her back into bed since there was really no other option.
She did manage to get up for breakfast, but then and most of the rest of the time I tried to talk with her, she could not speak intelligibly. Once this evening when the words she used were recognizable, they did not match what she wanted. She said she needed to cook a meal, when it became clear that she intended to say a drink of water.
[WARNING — GROSS CONTENT] I was barely able to get food into her mouth for the little bit she ate. At breakfast, she did get her pills down with much difficulty. I fed her a few spoons of yogurt before she just didn’t take any more. I found out shortly thereafter that the last bites had not been swallowed. As she sat in her chair for a while, I had to get napkin after napkin to deal with what had not gone down, along with lots of clear fluid. Sorry to include such unpleasant stuff, but it I have passed the will to be delicate and I am too tired to try to think of some cute euphemistic way of saying it. This matter of not swallowing food and uncontrolled saliva production is a new and unsettling issue for me.
The difficulty in dealing with the once or twice a day intestinal activity really is pretty close to being unmanageable by myself. To hold up her weight with one arm, as she is pulling away from me while I am cleaning with the other is just barely doable. That has been continuing for many days now with no sign of improvement.
All of this is becoming a very old story to those of you who read these posts regularly. What seems different to me is that we appear to be losing ground at a pretty rapid rate by comparison to past declines. It seems that every few days something worsens. The changes seem too rapid to me to be a normal part of the disease process. In my mind the evidence still points to medication issues for the rapidity of the decline. The trouble is that there seems to be no clear and definitive approach to medicating those with a form of Lewy Body Dementia that produces consistent results. The same med can produce opposite results in different patients.
I may simply be in denial and the rapid changes may just be a function of the disease. As our Parkinson’s Speicalist once said, after 23 years of the disease and the meds, there is no telling what problems are caused by side effects of meds and which the progression of the disease.
Volunteer Elaine came over to spend time with Mary Ann this morning while I went to the lake to sit and read and ponder and look for birds. Today, it was hard to leave, and I couldn’t let go of concern for Mary Ann lying in bed talking to the hallucinations. Mary Ann ended up sleeping (or just lying there) the entire time I was gone. I just don’t like how much more difficult this is getting and how fast it is moving. It is not so much life threatening as it is that our system here at the house is being threatened.
One bonus this morning was that Elaine surprised us with a Quiche she made for us while at the house. Not only that, but Volunteer Tamara had asked yesterday if she could bring food to us again. When I answered her question about what Mary Ann liked, what popped into my mind was, Quiche. This morning while Elaine was making her Quiche for us, Tamara brought two more. Mary Ann ate a piece of one, although the same thing happened that had happened with the yogurt earlier in the day. I ended up eating a couple of pieces of one and one piece of another by the time the day was over. They all appear to have home made crusts. They are wonderful. One will end up in the freezer in pieces to be heated in the microwave later, but I suspect two of them will be long gone before that happens.
I am hoping for a better day tomorrow since our Son, Daughter-in-Law and Granddaughter are coming over for a while for Memorial Day. The menu will be Quiche — and Glory Days pizza for those who are not into Quiche.
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The Caregiver Calling 
May 31, 2010 at 9:56 am
Do not worry about grossing any of those of us that keep in touch with you through your writtings. When you care, you do not get grossed out.
Also, you are very kind with your comment about some of your company not being into Quiche. For those that do not know, Pete and I have a mutual wonderful Granddaughter that only has ONE FLAW, she is a very picky eater. Quiche will not be on her diet but cheese pizza will. You are not only a good and thoughtful husband but a good and thoughtful Granddad as well. Enjoy the kids and have a better day and night.
May 31, 2010 at 7:34 pm
She brought Macaroni and Cheese with her. We ate the Quiche. She did join us for the Baskin and Robbins ice cream pie!
May 31, 2010 at 11:52 am
My Fred,thank God, doesn’t have Parkinson’s,but we have struggled with lbd since 1997when the dramatic symptoms started. We have dealt with all the things you are dealing with including some PD behaviors. He does the jerking in his sleep, sometimes fighting,sometimes other things. Sometimes he just jerks,but I think mostly he is dealing with hallucinations even in sleep.We have had him stiff and shaking, making a horrible one note sound while defacating all over the floor or the bed. Then of coarse spreading it everywhere when I’m trying to clean him up. We have had Hospice when his organs all begin to shut down.And then he comes back. I have been sure, as was everyone else,that he was dying several times. When he finally goes it will be such a shock,because we have expected it before.We live in a town where there are 60,000 people in the whole area and that includes several tiny towns,so we have no doctors that seem to know anything. They told me to go on the computer. I get suggestions from there and take them to a family practitioner and he prescribes.We are doing a lot of trial and error,but Fred always comes back.I get that he will never be quite my Fred again, but we still have times that he makes me laugh.As hard as this is,I treasure those times.I don’t think losing ground is any more predictable than anything else with this dread disease.My prayers are with you.Please continue blogging.Know that you are helping others just by that. Thank you and best wishes.
May 31, 2010 at 7:32 pm
Jo Ann,
I notice you recently joined the LBD Caregiving Spouses online group. Be sure to read those posts, as hard as it is sometimes. It certainly helps me to see the very same things we are dealing with described by so many others. Thanks for the prayers. I certainly understand the matter of treasuring the times we have as hard as they are.
Peter
May 31, 2010 at 8:33 pm
Peter, your remarks about the varied menu items enjoyed by both you and Mary Ann have never ceased to amaze me, knowing as I do the devastating damage PD plays on all muscle control. After all these years it is no wonder that from time to time she may have difficulty swallowing, I do hope it is only a temporary occurance, perhaps some ‘off’ time due to med timing.
Ev