My daughter is currently living with us which is a great help, but she might leave at the end of the summer to pursue her own interests. I am not sure how to be his wife and caretaker at the same time. I find my patience is thin with the constant repeated questions and need to direct him concerning daily living skills. He does not do well in an institution. We saw that after a rehab situation. I want to keep him home, know that extra care is needed but find that to be hard to find. I have loved and honored him for almost 40 years of marriage and know that an institution will kill him. How do I take care of myself and honor my vow to him to keep him home. My own health is less than stellar. He is 12 years older than me and 83yo. His situation was exasperated by throat cancer and the chemo and radiation he received. He is free of cancer now. He also had kidney cancer 15 years ago and with the one kidney removed he was cured of that. He and I have been through a lot, and I will not abandon him now. He was looked up to by his colleagues in ministry for his clear and convincing statements on justice and mercy. I am tired and concerned and guilty about my own impatience. I, too, am retired clergy.
Caregiver support groups have been helpful to some.
The truth is that you are dealing with what is the most common end of life scenario. Typically, husbands often become ill and require care sooner than wives. It doesn’t make it easier just because it is common.
I wish you well and relief from impatience which can be so hard to deal with.
It’s important to get help. I had home health aides, including a live-in and eventually, an overnight, so I could sleep. Getting help didn't mean I was abandoning or failing him. I just could do no more. Getting help with his care meant I could be his companion - something as simple as sitting on a couch together after dinner without worrying about getting him ready for bed.
He became profoundly weak, & his mental state added a terrible layer. I wanted so much to reconnect with the man he was – I think that's a common desire. Was he the confused, angry, anguished man who couldn't remember how to operate his stair lift, who insisted on walking to the bathroom in the middle of the night even though he could barely walk, who accused my family of hating him because he wasn’t in a photo that was taken before we met, or who thought one of his adult kids was terminally ill? Or was the man I knew lurking someplace because he knew me, our relationship, our adult children & grandchildren? The truth was, the man I knew no longer existed because certain nerve connections in his brain were broken. I cared for him at home until his agitation forced a 911 call. He died 10 days later – 2/14/22. He was 83. It was a sad ending for a wonderful man.
My journey was short & operated at warp speed. But it also helped us avoid financial issues. You are at the beginning. No one knows what you & your husband will face, but I do know that honoring your vow to him and keeping him at home is not the same thing.
Learn what you can about dementia. Be realistic about finances. Learn what services will be available to you and take advantage of them. Learn what coping mechanisms work for you. You’re not a saint: you’re human & you’ll make mistakes. Know your limits and try not to allow guilt and anger to guide your decisions. You might find Teepa Snow helpful: www.teepasnow.com.