
HOW do you do it? I work full time, 45+ hours a week, and only have weekends off. I care for my husband. He's home all day long. I get it, he's bored. But he wants me to take him out every weekend to get out of the house, and I'm pooped. I get snappy and I don't want to show up for him that way. How do you handle it when you get impatient?
I don't know what your homecare situation looks like, but if you're getting him diapered, bathed, dressed, fed then you leave for your full-time job, you don't have enough help at home. There has to be more for home to remain possible.
I did homecare for 25 years. Way back when I was in my 20's I had a care client with ALS. He was great guy, but I was exhausted every day when my shift was over. Now mind, I was one of five caregivers who provided round-the-clock care. It wasn't even full-time and was my only job yet it exhausted me and I ended up leaving that job after only five months.
If there's any hope of keeping your husband at home, you have to bring in more help. If that's not possible then facility placement is the next step.
Of course you love your husband and want the best for him. Empathy without boundaries is self-destruction. He has to understand that you can't run seven a days a week because he's bored. You need help coming in or he has to be placed.
I'm also a big fan about being honest with our spouses. If you're too tired to get away one weekend just tell him that you're sorry but you just can't as you have things to get done around the house.
It's normal to lose our patience every now and again, trust me all of us that were/are caregivers have done it, so don't beat yourself up over it.
Instead just apologize and remind your husband that you're doing the very best you can. And that is all any of us can do.
I get up at 6am, get him bathed, changed, diapered, fed and settled. Then I care for our dogs, then get myself ready and head out to work. I get home and have to start all over. I get up at 3am generally to help him use the bathroom, change diaper and then back to bed.
I just want to sleep on the weekends. I take him for a day trip anywhere he wants to go every weekend.
Just looking for hope that this gets to be routine and I'll get used to it. I have great compassion for him and know he is hurting that he can't do anything himself. His mind is sharp.
Thanks for the encouragement.
You need some time to recharge. I agree with the other posters--can you get some help in--either to get him ready after you go to work and spend some time with him so he gets out during the week, or to take him out on the weekend so you can rest a bit?
Is there any assistance that disability can provide?
You may want to give more details about the situation so we can understand you better and give you helpful comments.
Have you looked at ALS.org for resources and support? You need respite and you need help. Nobody can handle full time work and a husband with this many needs alone. Of course you're burned out! Was dh a vet, by chance? There are resources from the VA if so.
I sincerely hope and pray you can hire an aide to help out and give you respite. You need at least a day a week to recover and sleep late. Please keep us updated and God bless you.
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