This week our focus is on moving John's aunt's things out of her assisted living apartment, as she has moved permanently to the nursing home at her retirement community. We have one helper who is very good at sorting through things and making decisions. John is not so good at that but he did arrange several people to pick up things.
I've been trying to set up an alternative for our son, who is in his first semester of college and flunking out. I wanted to make sure he had another choice and doesn't have to stay home and deal with his father's illness unless he chooses to. And today I heard the good news that he is accepted to what was originally his second choice college for the spring. I'm hoping he has had enough time to learn his lesson, but I think a fresh start will be a relief for him.
John was complaining yesterday that I don't tell him things. Actually, I make a pretty good effort to keep him informed. Sometimes he forgets, sometimes I don't tell him because I don't want to spend the time and answer his questions and have him second-guess me, and sometimes I don't tell him because of my resentment that he doesn't share the burdens more. He said he thinks I am angry at him for getting sick. I said I am angry at what has happened to my life but he is just going to have to live with my strengths and weaknesses. I'm good at working things out practically, but I'm sometimes going to be impatient or irritated.
LEWY BODY DAILY JOURNAL
This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.
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Tuesday, December 15, 2009
tired
Tuesday, December 2, 2008
appreciating what I have
I have trouble enjoying what I do still have with John, which is a lot, because I am grieving so what is lost. Instead of appreciating what he can still do, I resent what I now have to do. I've been trying to work through this by accepting my feelings. What has worked for me in the past with difficult feelings is to go through my anger and resentment, let myself feel those feelings, and eventually I will be able to get past them (while if I try to suppress them they will never go away). But it doesn't seem to be working.
I think the reason it is not working is that I have not been able to fully get past my resentment over the things I didn't get from my mother (like a safe childhood). I'm not willing to appreciate the things she did/does give me because she didn't give me things I critically needed as a child. So I easily get stuck in child feelings of "it isn't enough." But I don't know how to heal that further with my mother either.
So I am beating myself up about being stuck in anger and resentment. John used to express concern that I was feeling bad about feeling bad. Maybe I just need to give it more time. But I'm wondering what other ways out there might be.
Labels: anger, grief, Lewy Body Dementia
Wednesday, July 16, 2008
talking about my anger
John and I did meet together with the therapist today. John and I had talked about it beforehand, and I said I would try to let out my feelings in levels so that he could say stop when he couldn't take any more. He thought it would work best for him to just listen, not respond.
I talked about:
- I find the current situation very confusing--I don't feel confident in my own evaluation of what John can do and what I should do, much less how much it is progressing.
- I feel burdened by having to take over responsibility for that he used to do, plus going with him to his doctor's appointments and reminding him of things. I feel like it is more than I can manage.
- I feel trapped--I'm not likely to get the deeper relationship I wanted to build but now there is no way out.
- I am angry that the good things I hoped for in these 15 years before retirement have to be put aside to care for him.
- I feel that caregiving isn't the person I am or want to be.
John said he had a sense of those feelings in me but it had a lot more impact to hear it. He said that he and I come from different worlds (lower-middle-class Texas and old New England) and we have had enough in common to bridge that but now the different worlds are showing. He said in the world he comes from you make the best of what is. I think he was saying that my anger at the situation, my feeling that "I don't want to be here" was foreign to him.
He did say he never complained about taking care of me when I went through an intense healing journey. That is true, and he took over all the cooking for several years. But I still kept up most of my share of responsibilities, particularly the ones he wasn't good at. I was never hospitalized, never non-functional for more than a few hours or a day. This is going to be much worse.
He has been quiet since; at dinner we talked about everyday things. Sometimes he gets upset about something I've said not when it happens but late at night, so I'm still worried about what his reactions may be. I feel better to have it out in the open.
Labels: anger, Lewy Body Dementia