The Caregiver Support Group met yesterday. I had arranged a speaker from the local medical supply company to talk about equipment that is available. After he finished speaking, it was evident the longest attending member needed the support of the group. Since the last meeting a month ago, there had been a major decline for her husband. At the last meeting, he was having more trouble with mobility, but he was still walking. Since then, he had a fall and now he is pretty much bedridden. This caregiver had previously gotten someone to come sit with her husband at night so she could sleep and not worry that he would try to get out of bed and fall. Now, she has 2 shifts of outside caregivers and she takes the 3-11 shift herself. She also has the tremendous support of hospice.
Sometimes I get frustrated because so few people attend the support group. I feel like it is a waste of time. Usually the local paper will print my announcements of the upcoming meeting. This month they did not. But as always when I look back, it seems to be for the best. This caregiver really needed to be able to freely share how she was feeling. She could be honest with the group that her son is no help and she is better off staying away from him than getting frustrated with his lack of support. The other 2 members, as you would expect in such a group, are very compassionate and caring. Not only did they exchange phone numbers so they can talk throughout the month for support, but I had to leave for an appointment and they stayed after I left and talked. I have to reframe my idea of success I think.
So what about time? We are trying to encourage my dad to move he and my mom closer to me so he can have family support. Yet we know it is important for him to be independent. My brother even said when he asked me, "I know you can't predict but how long will we have until she requires more care?"
We talked about that at the support group yesterday. I am asked by families all the time, how long can mother stay in assisted living before she will need to go to the nursing home? How long does someone live with this disease? At least I am comfortable enough with my skills and knowledge now to be okay with telling people, "you can't predict". The above caregiver has said many times, they started trying to figure out what the problem was in 2007 when her husband was complaining about not being able to see. Seven years, that fall right in with the guideline the Alzheimer's Association gives of 8 to 10 years. Who knows how long her husband will live bedridden. When I went to work for hospice, we had a patient who was considered end stage Alzheimer's disease. When I left hospice 4 years later, he was still alive.
Of course it is important to at least have an idea about time so you can make plans. I worry about this caregiver. Can she really provide hands on care for her husband ongoing for years? Right now she has the other shifts covered, but as I well know, employees come and go. Regardless of how many years, how much time is left, how do we invest the time we have now? I wish my parents were close so I could spend time with them. But since they aren't I will do the next best thing and invest time where I can. I will try to do better about not multi-tasking during our weekly phone calls. I will try to do better about sending cards and letters during the week. I guess one of the good things about the sandwich generation is that once you get to my age, you realize the exhausting time raising your children was really relatively short. And now I can see that the time to be able to share with my parents, especially where my mother will remember, will be relatively short as well. Even more than money, I need to invest my time wisely.
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