Hello, I live in the US. I know technical details about services, etc. will not apply to me, but I am here for emotional and moral support.
I have been caring for my husband for one year. He is 29 years my senior (he's 80 & I'm 51) and we have been married for 33 years (since I was 18). We have three adult children. I have seen him through early retirement when I became the main breadwinner, a minor stroke, and prostate cancer. Our age difference puts me in a fairly unusual position of having so much of my life left to live and wondering how I will spend the next 15 years of my working life and relative youth before old age sets in for me. Will it be primarily in service to him?
Like others, I am mourning the loss of our past. We were very much in love. I have gotten over that first stage of shock, anger, depression, and rage. I have been making big changes to my attitude and approach. I have started to think of my husband as a patient and not a partner and that process is painful but also helpful. Honestly, he's been checked out for years, and I was becoming more and more resentful--but the diagnosis put a lid on all that. I can look back and appreciate all the good times we had and what he's given me in terms of love and family. I should say that he is not a wealthy man, but an artist, so I did not marry for money, and I will inherit nothing.
He is in a relatively great place in that I care for him full time as our oldest son moved in to help financially since I stopped working (In October, I went back to working one day per week for sanity and extra cash). My husband has nothing to worry about, and he knows he's being well cared for.
I am not sure how long I can do this. I have become more spiritual and convinced myself that this is not a choice but what God wants from everyone--for us to care for each other. I have convinced myself that nothing else will be as truly satisfying in the long run.
How could I put him in a home? He's not at that point yet anyway and that means (I suspect) that he will slowly deteriorate over many years. Despite my resolutions, I find looking at him every day and playing along with his word salads and weird behaviors to be very draining and stressful. I am living my life to serve his basic needs and otherwise hiding from him. I don't sleep in our bed anymore. I do not have any help and don't really get a break. I am also cooking for my son and feeling very trapped in general. I have become a full time homemaker, I was a college professor previously.
Our son works from home and enjoys living where we live (a rural area rather than big city--we made that move during COVID). At first I was concerned about his sacrifice but realize he doesn't have it that bad at all. He only gives me the amount of money he'd spend if he lived alone and rented his own place & paid for utilities and food, etc. Plus he gets all his meals cooked for him. It's good to have him here for emergencies or so I can sneak out for a few hours on the weekend, but he's not actively caretaking. I can't do anything during the week b/c son is too busy with work to look after dad. Dad could be left alone more at this point, but there's a danger with the dog. He will let the dog out or try to walk him and possibly fall. Getting rid of the dog has been discussed, and that would at least temporary allow me to work more or get out more, but 1) the dog is a great friend and 2) I would still have to return to the caregiving after work and just be extra stressed as I was before I stopped working.
Plus, husband gets very disoriented when I am not home since son is out-of-sight, out-of-mind working all day in his home office. Husband does not eat when I am not home. When I return, he acts very agitated and often angry that I was gone for so long. On Tuesdays, I work and drop the dog at doggie daycare. Last week, when I returned from work husband was sulking and angry and I asked him what was up. He said: "you just disappear for hours, leave and then come back, fly in and out, etc." I said I was at work--at the school. He had no idea. He had not eaten, I was pretty shocked that son did not make him even a sandwich. (32 year old son often won't eat if I don't make his lunch). Husband can't keep track and he gets really moody when I leave him. It's a lot to manage for me so I've resigned myself to just hanging around or dragging husband and/or dog with me everywhere. I spend much of the day in the kitchen.
I guess I am just wondering if I should be planning some new path or making some new inroads. The resignation (or--to put it more positively "acceptance") has worked for the last few months to keep me calm and focused, but I fear that this lifestyle is a death sentence for me long term.
Rather than being mournful, I am starting to feel like I could start a new chapter of my life that does not involve being homebound. I find myself wishing he would progress quickly so that I can say I provided his care until the end (but also have some good years left for myself).
For those of you who have made it this far: thank you for bearing witness to my rant.
What do you think my best options are? I know it's a personal decision & if I meditate on the future, I can see that changes are necessary. Also, I think if his mind were sound, my husband would say he does not want our lives to stand still for him.
It's helpful to get others' insights. I need a plan one way or the other. What changes have you all made? What worked for you?
Thank you & good luck to everyone.
