Today, I'm stuck at home because my husband is unwell. For the last three weeks, I had managed to get out on Thursdays to attend a local caregiver support group. This time, I'm sitting at my computer typing on this (very helpful) support website.
My life has shrunk, but in many ways it's OK. I work online from home, I have my phone and computer for interacting with the world, and together we go out to appointments and restaurants several times a week. Friends? Does someone need friends when they have healthcare specialists? (lol) I believe it is an honor to care for my husband, and I love him so much. He is my world, and I am his. Since he sleeps a lot, it's not too much work. Do I crack up from the stress and sleepless nights? Of course, yes, sometimes.
Everyone tells me I should have home health aides who come in and give me a break. They tell me they don't know how I'm doing it on my own, and that I need to hire someone. They tell me I need to set boundaries with my husband and lay down the law. This pressure from well-meaning people causes me to crack up sooner and results in fights at home. My husband is absolutely against anyone coming into the house to care for him. I have to plot and push and fight to make it happen. Last year I took a class at a local college once a week, and it was constant angst leaving and returning. I got an A in the course, but didn't get much enjoyment out of the whole experience. And, although I enjoy the weekly support group, I'm not loving it so much that I'm heartbroken if I can't attend. I'd rather be here with my hubby if he's feeling so unwell. But then, I also feel like I'm missing out and should not be conjoined twins with my hubby all the time.
Is anyone else in the same boat? Is there anything wrong with choosing not to get outside assistance?
This week has been extremely tense because I've needed help transferring him a few times. So, I've been trying to set up help for the coming weeks, but after a big fight yesterday over a shower aide, I'm worn out. He can't see that it may be time to have extra hand around for certain tasks, and I'm tempted to let him discover it on his own because until he does, our lives will be miserable because of fighting. After a 15 week semester, he still hadn't adjusted to having someone in the house for 3 hours a week, even though it was a family friend! I try to address his exact concerns with accepting help, but it hasn't worked. He wants me to be with him, and he wants his privacy from outsiders.
In this post, I covered both aides for physical safety (transfer) and aides for my respite care. I do realize that sooner or later, he'll have to accept outside help because it will be unsafe, but so far we can make do by calling a neighbor friend if needed. And when I do crack up from the stress, he usually lets me sleep better the next night and treats me extra kindly, and things get easier.
I’m surprised that home health would insist you participate. Is this home health or therapy? Even so, when the therapists came out last year, they never asked me to “help”. They directed their suggestions to my husband and expected him to carry them out.
There’s no doubt that we lose ourselves when we caregive for our spouses. Thank heaven for this site.