It has been an enlightening week, especially with the help of friends who know and understand what it is like to have family going through dementia. (I don’t capitalize it because I don’t want to give it importance – well, it makes sense to me!) I have been to see Mom three times this week – she must have been very surprised when both Eddie and I showed up yesterday bearing chocolates. Mom is talking a lot about how much she would like to come and live with us – I have told her “This is where you need to be, this is where you wait for the train”. She has said it several times in a visit and that she wants to get out of there. But she wasn’t really happy here either – strangely enough, one friend asked if she is just doing what she has always done all my life? It didn’t take being a rocket scientist (and I happen to know one) to think about that.
I’m sure a lot of Mom’s depression is that she misses my Dad – he has been gone for 12 years and she is lonely. She has always looked at the negative of everything for as long as I can remember. I don’t know where it comes from, is it childhood, one or more experiences that really left and impact on her? I haven’t clue. Since we came to live with Mom, I began to say something positive when something negative comes from her. We were going down the steep hill in front of the house and she talked about how easily we could over the side and crash. I just said we could go down with no problem and make it to where we plan to go with no problems. I realized that all my life I have bought into her negativity and gone along with it, even accepted it. But that day I couldn’t deal with it any more and decided to turn things around for a change.
As for wanting to leave, I have talked to several people who have dealt with parents and dementia and they tell very similar if not the same story. My friend Charlotte, whom I have known since 9th grade, went through it with her mother for many years. She wrote me the other day and what she said really helped:
The reason your mom gripes to you about things is that You were her primary caregiver for quite a while, and she feels “safe” spouting off to you, I think. You are right to change the subject or just ignore it. If she presses the issue, you can always say, “thank you for telling me that” or “I’m sorry you feel that way”, and then move on. Eventually I think it will pass, particularly as the disease progresses. You are so fortunate she can still talk, even if she doesn’t always say what you want to hear, or even make sense sometimes. That was the thing we missed most about mom’s dementia–she lost her speech completely, at the end, and for several years had an extremely limited vocabulary, so communication of any kind was difficult at best. (And last night I had a little meltdown when I suddenly couldn’t think what her voice sounded like; that really bothered me.)
I think the things you are doing for/with the group home are very good, and makes a nice break for everyone. It’s really very thoughtful of you. I never thought to do anything like that for my mom when she was in the group home. And, yes, I’m sure some of the others do have visitors, too, but you might ask and if there’s someone who is really alone, maybe pay a little extra attention to that one, or bring a special treat once in a great while just for that person.
What she is referring to was my Friday visit, I took two rolls of refrigerated cookie dough – chocolate ship and sugar cookie – and baked them there at the house. It ended up that Judy the caregiver did a lot of it because I am not familiar with how their oven works. We had a good time and the smell of baking cookies filled the house, part of the plan. We did a cookie of each for every one, so there is still a half roll of each for another time. It felt very good when they said I had made their afternoon. It was surprising when Eddie suggested that he would come and we would all do it again, making sure that the owner Didi is there as well.
I have met all the other residents, including Ginger Boy who is John’s cat, except for Wendell. He is usually in his room because he needs a wheelchair. I asked Judy if I could meet him and bring some cookies, so we did. His room is next to Mom’s and he is very friendly, he really enjoyed the cookies, especially the chocolate chip one. Yesterday I went in to say Hello to him – now that I have met him, I want to be sure to visit him whenever I come to see Mom.
So I didn’t board the guilt trip bus this week, I am more comfortable with Mom when she talks about wanting to leave – it is not unusual. Nor do I have to fix it and make everything better. I only have control over my own thoughts, not anyone else (as I keep saying to myself over and over). As a friend told me, she has chosen to have this experience for her own reasons, just as I have probably chosen to go through it with her as well.
Tags: Cookie dough, dementia, Family, Mother
Gift of RA 
Leave a Reply