Here are parts of an email that my uncle wrote about our most recent visit to the doctor for Grandma. It gives a good summary of what she is up against now and what basically occupies my life at the moment (for who knows how long).
Britt, Michelle, and I attended Mom's appointment today. We did not have any new revelations from Dr. Mower today, but we did gain a better understanding of where mom is at. Her heart is functioning at or below 20%, which is quite serious. However, there is no timetable on life expectancy due to this number. She could have a rapid decline or remain stable for several months. We will find out more from the heart doctor tomorrow.
(The heart doctor said the same things, pretty much. The top part of her heart started "quivering" again, which has caused her difficulty breathing in the past month. She is stable at this point. It's just a waiting game.)
As for the kidneys, she is functioning at about 35%, which is chronic kidney disease level, but not kidney failure at below 15% which would require dialysis or a transplant...neither of which would be appropriate for mom. This is less likely to be a life-altering factor in the short run than the heart failure.
An additional water pill has been effective over the last 8 days and she has lost 9 lbs. Her legs are less swollen and the doctor noticed marked improvement there. Oxygen = 95% -- encouraging.
The most rapid change for the negative seems to be the dementia. She was tested with questions and scored 14/30. This is not yet severe but it is a problem that is making leaving her alone to herself less than ideal. We have witnessed this decline and yet were somewhat surprised that she had difficulty with such questions as what state she lives in or what year it is.
Dr. Mower was not at all surprised at the rapid decline mentally, though we have been. We feel like we can see it happening. More and more conversations are difficult. She forgets words or cannot complete thoughts. She can't remember the day of the week or whether she has taken her pills. Information given to mom is quickly forgotten and VERY seldom passed on to Michelle or Nick. Britt's favorite part of the memory test was when mom was asked to write a sentence. We were thinking of sentences like "Let me out of here." or "This test is SO stupid." What did mom write? "I love you."
Dr. Mower said she does not yet qualify for hospice care for the dementia, but she does for the heart failure. Once your heart is working at less than 20% you automatically qualify for hospice. We don't feel ready for hospice, but we do feel the need to have an aid come a few times a week to help Mom with shower time. Dr. Mower mentioned the company Symbii that he is the hospice director for, and we all thought it might be good to use that company since it would be easy for the doctor to know what is going on.
Michelle will be starting up work again pretty soon and although Nick is willing to be here for Mom and even help with shower time if needed, Mom is not comfortable with the male assistance in that arena.
Mom gets around fairly well and can physically dress, shower, use the restroom, etc., but the dementia causes problems for her in the dressing department. She forgets what step is next or puts her pajamas on over her clothes, or only partially dresses. She can physically do almost everything when she is reminded step by step what to do. (This also includes when she's showering. I have to tell her step by step what to do, and give some assistance.)
She has begun to resist taking medication. It can take hours to give her her medication. She often asks if she really has to take all that medicine and what the medicine is for. Although she wanted to go to church Sunday, she was very late because she wouldn't take her medication. This morning she said she did not have to go to the doctor. She protested and suggested we go without her for half an hour. So we rolled her rolly chair out to the car and she got in and went without incident after that.
We want Mom to maintain her dignity and whatever independence she is capable of, but it is very trying on the patience of any caregiver if she refuses to do what is good for her. We were pleased with the oxygen level, since that is something she takes off and is without most of the night, even when it is replaced repeatedly by Michelle, or Nick, or I. She does not put her feet up as much as she should, yet the new pills for the water retention have worked so that is not as big a deal as we thought it was either. We can give in on some pills like the less effective "memory" pill, but there are others that if she were to go without, the doctor said we would see a rapid decline. Of course we don't want to see that.
Mom seems mostly content and comfortable and does not really complain. When we first arrived last week she mentioned a few times with a little smirky smile that she isn't going to live very much longer. If there is any kind of rapid decline, per her wishes and living will we do not plan to take her to the hospital or try to revive her.
(When I ask how she is doing or what she is thinking, she says she is fine, but confused about life. So, even though she doesn't or can't verbalize what she is thinking all the time, she is getting more and more confused about the things going on around her.)
Right now, though, she seems physically stable--though she now wants some support as she walks and reaches for walls or chairs to support herself. She still has some sense of humor about the dementia. When we were trying to convince her that she was supposed to go to the doctor's appointment she tried making excuses that didn't make any sense and kept saying we just don't understand, and she was right. This is a learning process for all of us, so I am sure we will make mistakes, but I am very glad that Michelle and Nick are here and trust they will do their best for her. Any help that she can qualify for though I think we ought to take.
When I look at Grandma, her eyes are all watery, and small, and tired looking. She says she's not tired, but that she's fine. It's really hard to see her like this and it makes my heart ache. I really hope she won't suffer for long.
