feeling burdened

I've made plans to give away our cat tomorrow--John doesn't like her around because she demands attention. I'm not strongly attached to her but it is still a sad thing to do. I think I have found a good home, at least, someone who really cares about cats.

We are supposedly on vacation in North Carolina and John still seems to enjoy being here, though his hiking is really slowing down. I went back home yesterday and will go again tomorrow to deal with work and house matters. I'm worried I should be there today to look for anything in the rewiring that isn't the way I want it. I forgot to check yesterday whether they moved a switch I wanted moved--I know they didn't move another one. The good news is that they are hoping to be done today with the rewiring.

Our son missed his plane home from Spain Saturday and I had a hairraising time getting him scheduled for a flight the next day. But he is now home and with us on vacation. Next step is to get the details worked out to take him to start college at the end of the month.

I went to a Lewy Body support group yesterday, though I didn't stay the whole time because I wanted to get back to North Carolina for dinner. Still, I liked the other people and I talked about how confusing it has been for me.

disappointment

We were supposed to go to the first meeting of an Alzheimer's Association early stages support group this morning. But John woke up during the night coughing and didn't get much sleep. He called the doctor and took the first appointment he was offered, at the same time as the support group. The doctor said it was just a cold and gave John more codeine cough medicine. I had told John not to take it (we had some on hand) because it was likely to cause hallucinations but he took it anyway this morning and said he didn't have any problem.

This kind of thing is hard for me because if I had been the one who was sick I would have taken much more seriously my commitment to the support group. John was positive about the group when we signed up in December, so hopefully we will get to the next meeting in two weeks and he will like it. I would really like to have a place to share the confusion of this stage when John is ok and not ok.

The New Normal

One of the concepts that struck me at the Well Spouse Association meeting is the idea of a new normal. I didn’t even go to the workshop with that title, but the phrase has stayed with me. I think I’m imagining some stability, and in the long run I’m not going to get that. But I still see some peace in thinking “this is now what’s normal for us.” This isn’t (or isn’t only) a strange and scary place, it is where we live. That’s very similar to the famous meditation for people with children with disabilities called Welcome to Holland. How to be here, in this unexpected place? There were people at the conference who had been well spouses for 20 or 30 years (mostly with spouses with Multiple Sclerosis). Caregiving is a place people live, not just one they visit in a crisis.

How to settle down to living here? I wonder if it is possible to sit down and discuss with John what he can do and what I will do. I will take care of finances and family plans and remind him of those things. I will go to doctor’s appointments with him. When he asks me to, I will take over his bills and organizing his medications. He is responsible for his things and for the day to day matters of his health, such as exercise, and for finding the things to do that make his life worthwhile.

Well Spouse Association

First some resources:

A really good article on dementia and violence.

A story about grief on video.

I'm in Chicago for my first convention of the Well Spouse Association. I got in a little late for dinner last night, but people were very friendly. The first workshop I went to this morning was on Tear Soup. They had trouble getting the video set up so we first went around the large group and told our stories and what we were grieving. So much in common. Then we did get to see the Tear Soup video, which is very good. Then I went to a workshop on self-identity in caregivers, where we had to keep being brought back to talk about ourselves. After lunch I went to one on How do we cope? for those with kids. We were a small group but we had kids around the same age and it was really helpful. People headed off for tours of various attractions in the afternoon but I decided that what I needed to do to take care of myself was to have a quiet afternoon. Feeling a little teary about being with people who get it.

Support groups

I didn't learn anything I didn't already know at the Alzheimer's support group tonight. There was a presentation on medication, but it was information I knew already. Actually, I did feel less discouraged when I left, but I had other things I could have used that time for that would have been more useful.

This coming weekend is the Well Spouse Association meeting--I hope that will be more helpful.

LBD support group

I went this evening to our local Lewy Body Dementia support group. The organizer and I were the only ones to show up. We talked about how we might find more people. The local Alzheimer's association does let people know about the LBD support group--that is how I found out about it. She thinks the problem is that doctors in the area are not diagnosing Lewy Body Dementia. I suggested then maybe we should organize it as a Parkinson's support group with caregivers meeting separately. The closest Parkinson's support group is 30 miles away and meets in the early afternoon.

further conversation

I told John that he may believe that ending his life (he is clearly talking about some years in the future) would be the right choice for him, but he should not believe he is doing it for his family. I am confident I am well on my way to knowing how to care for him through Lewy Body Dementia, to a natural death, without it being emotionally or financially devastating. He said he wasn't convinced that was possible. I gave him a couple of examples and what seemed to make the most impression on him was my confidence that even if he got violent that could be controlled by medication and after a while he would come out of that stage. Sometimes I feel that reading the Lewy Body caring spouses Yahoo group means I know too much too soon. But here that knowledge was valuable.

I am off to a retreat for the weekend at a place that has been an important spiritual home for me. They have decided not to take guests any more after this weekend. I hope this weekend I will be able to grieve that loss.

support

I found a new support organization, which I am very hopeful will help me feel less alone. It is called the Well Spouse Association. I've been wishing I could connect with other caregivers who are below retirement age and caring for spouses, not parents, and I think this organization is where I will find them. I'm even tempted to go to their conference in Chicago in October.

If anyone is interested in the journaling workshop I have been doing, there is a new group starting October 14. The cost is $100. The information:

What: Join us for a five-week journaling workshop conducted through e-mail. Relieve the stress of caregiving and share. We’ll only say what we love in the writing.

Where & When: Offered through group e-mails, starting October 14, 2008 & January 13, April 14, July 14, and October 13, 2009. E-mail Lgood67334@comcast.net for information.

Why: Caring for oneself is as essential as breathing, but caregivers lose site of that fact. Journaling is a caregiver’s oxygen mask.

Who: Instructor B. Lynn Goodwin is a veteran of six years of caregiving, a freelance writer and editor and a former college and high school teacher.

Contact: B. Lynn Goodwin, Lgood67334@comcast.net. Put “Journaling” in the subject box.

Curious? Want to see if this would work for you? If you have not been in one of my groups, cut and paste 15 to 1500 words of your journaling into the body of an e-mail and send it to me. I’ll tell you what I love and what stays with me.