If you are a spousal caregiver, like I am, I give us extra credit. When a spouse gets sick, parenting and spousal relations are changed in a unique way. It sure gets lonely sometimes, as well as hard. My wife is about 50% functional, vs. before she got sick. She doesn't have much left after volunteering all day. I don't begrudge her, but its still hard. I lost an equal parent, as well as my romantic and 'relational' partner, partly. Its a loss that is fully understood only by other spousal caregivers. It hasn't gotten any easier after 6 years. So fellow spousal caregivers, how do you handle the loneliness and hard times adapting to it?
nan, I can relate to your post, and I am so sorry you are going through this. I've been my husband's caregiver for 5 years. He's had two stem cell transplants, suffers from chronic graft versus host disease, neuropathy, recently had shingles and now has pneumonia. I don't know how much longer I can stand this. We live on an acreage in the woods so unless I actively seek out someone to be with it's just the two of us day after day. There are plenty of people I could socialize with but often I don't have the energy to get out. Is this my life now? I'm 61 and feel like I will never have fun again and that my life is over. Then I feel guilty for feeling this way.
My husband of 33 yrs has end stage copd and I feel guilt daily. We have no intimacy, no real relationship and I feel his illness is just driving us into poverty. I’m 61 and when he passes I will still have to live and pay bills. I don’t mean to sound heartless but I just being realistic. Dying isn’t cheap. I feel as if I’m dying with him.
Hi DeBe...I am here to the caregiver forum and I realize this may be totally out if context for you now...my husband has also endured 2 BMT...debilitating GVH.....transverse myelitis...the dx with a H&N cancer in 2020.. then had to have a radical laryngectomy....never ending pain....I am 51.. been a caregiver for him for 11 years. Just needed to let you know that your comment from all those years ago really helped me today in 2021...thank you
CamilleHy, thank you for posting this. I mean, really! ... THANK YOU for posting this. I will bookmark this, because you are saying everything I needed to hear to refocus. I just have to look at this end of life like I handled every job - some I enjoyed, some I did not enjoy, but saw them to their bitter end (military, moving often, so there was always a quick end, whether I liked it or not). I only quit jobs after a week, or two weeks, but never once I was settled. I've seen them all through, regardless of any curveballs life threw me. This is a job. For better or worse (and it sure enough is worse now) I committed to it, my husband depends on it, and could not, at this stage, turn him over to one of those "care facilities" ... THANK YOU for your post. I really appreciate it!