I thought I’d have a good block of time to finally write a post, but I can’t get more than a few minutes at a time away from Mary, so this will be written in little pieces and may be a bit disjointed. With the amount of medication I gave her yesterday, I thought I’d have a totally somnolent Mary all day.
But no. She has basically been sundowning for a couple of weeks straight, and we are working on finding the right combination of meds to make her comfortable. Hasn’t happened yet – or the meds work for a couple of days and then Mary changes her MO and the meds no longer touch that restlessness and anxiety. The upshot is that I can never leave her unattended for more than a couple of minutes at a time. She can no longer walk on her own, so I have to be there to assist her every time she wants to move, which is every 10 minutes or so.
I have recently returned from cardiac rehab following open-heart surgery. While my weight restrictions (lifting no more than 5 lbs in each hand) have been eased a bit, lifting a 105-pound woman is not recommended at this point. But I have to lift her numerous times a day. Sometimes she can help, other times she is dead weight. While I was in the hospital and rehab, Mary was in respite at the local nursing home. When she returned home, she showed a marked decline in functioning, including an inability to walk independently safely.
Before she went to the nursing home, she had stopped eating any food except breakfast, and this continues. The amount of food she eats at breakfast is smaller – now only one egg and a piece of bacon or 1/2 piece of toast – and we are encouraged that she has, at least subconsciously, decided that she has had ENOUGH. Seven years of this suffering seems enough to us. Mary is finally beginning to talk about end-of-life matters, which is bizarre, because she is so disoriented all of the time that she cannot carry on a conversation. But this will break through the fog: “This disease makes me feel like my life is just a waste.”
This from a woman who has never, in her whole life, expressed her feelings to anybody (we don’t know if she talked to her husband). Yesterday, during her most restless period, we had a l-o-n-g conversation about her condition, her feelings, and her views about death. Unfortunately, because I never had a minute to myself, I could not write her comments down before I forgot them. And I am so weary that my brain has not retained them. It was pretty interesting stuff from a woman who is known for her rigid refusal to talk of anything more personal than the weather. I can only assume that this is one more inhibition that is being broken down by scrambled neurons, plaques and Lewy Bodies.
Hospice picked Mary up as a client again just before she went into respite, and we had hoped they would support us in our treatment of Mary, which is based on the premise that when she is telling us, through refusal to eat, that she is ready to go, we need to respect that and not force food on her. Au contraire, they seem to feel that we are starving her and that all we need to do is to keep putting luscious meals in front of her and she will decide she wants to eat. Been there, done that for three months before I got sick of throwing away meal after meal. So now I just ask Mary throughout the day if she would like tea, crackers, a sandwich or whatever, and she always says no. I do give her plenty of water, which she drinks. Everyone’s situation with his/her Alzheimer caree is different, and we (the daughters and I) are just pushing ahead based on our knowledge of Mary and her previously-stated wishes that she would never like to live like this.
But I have to admit that I feel very uncomfortable with folks thinking that I am starving her or in any other way trying to hasten her death.
We had two aides who would come in to help, but one has disappeared off the face of the earth and the other is very expensive. We have an aide from Hospice, but she comes just after Mary has had breakfast. undergone the difficult and exhausting process of getting changed and dressed and is fast asleep. I am pretty much up to the challenge now of single-handedly doing the transfers, bed baths and colostomy changes on a person who cannot stand up. It is a little wearing having to watch her every minute of the day because she might try to get up and will fall (why hasn’t someone invented an adult playpen?). Also not being able to go to bed until she is really sound asleep, which could be as late as 1 a.m. is tiring. Overall, though, it is just one more change in a constantly-changing scenario. We keep adapting, and some of the ways in which we have to change are not so comfortable, but soon everything will change again, and this period will look like a piece of cake.