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.
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Julia has such a positive, loving relationship with her husband - something to be admired, if not envied. I pray she seeks help and learns ways to care for herself, before it takes a toll on her.
My husband and I have always been joined at the hip, but now, even more so. I am told frequently that I need to get help, and my response is, "he is not bad enough that I cannot handle it right now." There are times, however, that I truly want to scream--as I am sure we all do.
That being said, I do get out on Monday nights to sing with a local women's choral group, and usually, one of the husbands from the gals in that group come and watch a movie with my husband. This way, I get out, and my husband is not alone. He thinks they are just coming over to watch a movie. :-) I usually fix dinner for them and when I come home, he is relaxed and laughing with his friend(s).
So, for now, JuliaRose, do not feel guilty for staying home with your beloved. BTW, my husband does the same thing--when I have a meltdown and cry, something snaps and he is the loving man that I married. This lasts a few days, sometimes longer. Caring for a beloved is a full time job--sometimes a job that you hate.
I have been incorporating Music therapy every day, and it really is a blessing...Google "Music and Memories"...I have my husband back--albeit with no memory :-)--when we play music that he loves...sometimes, these moments keep me together..and I have also hired a house cleaner that comes once a month--so he gets used to someone coming to the house. She has said that she will come over and "pretend" to clean the house if I need to get away for an hour or so...for now, I have not taken her up on that yet.
Keep your chin up, you are amazing and know that you are no alone. When the time is right, you will know.
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So...this summer she had two strokes and his options became go to a day program or live in a residential facility. Now, he loves the day program. He calls it "the club". And she is getting daily respite and coming along in her recovery.
What happens to him if you go down? You need to take care of yourself FOR his sake. My husband's aunt was lucky and will recover from her strokes. Some caregivers are not as lucky.
You have to do whatever you and your husband are comfortable with. As long as he’s kind and you do things together, don’t let people convince you to have outside help. They all mean well, but they are strangers after all. Your friends mean well too. Just shrug and say, “We do okay.” That’s what I do.
chrisestoch - you got your help
without wounding his pride -
so wonderful!
And may I say, your loving husband isn't being very considerate of your needs. Take care of yourself. 💜
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