How many caregivers are keeping their spouses at home until the nightmare ends?

Abby627, My DH is now late stage 6, early stage 7. He is home with me and I have Hospice on board for the last 6 months. This past August was our 40th wedding anniversary and we had the best possible marriage. My DH was always laid back, loving and always put me first. I too have always wanted to have him here with me through to the end. I want to do that for him but really it’s me being selfish, as I still want to be with him as much as possible. He may not remember “US” but I do. There are moments that are hard and honestly prayers have helped me through those. I also have family and friends that help by being supportive and listen when I need to vent. I joined a caregiver group here in my area and that has been good for me and I have had some caregivers a hour or two a week. I have learned to be very patient and understanding. I try to always remember our loved ones are not doing any of what they do on purpose, it’s the disease. I did have to give my DH prescribed medicine for agitation at the beginning of stage 6. I didn’t think my DH would get mean (not sure mean is the right word, more like very agitated) but he is easier to redirect and handle with the meds. Just take it a day at a time and also take care of yourself.

we are early in this journey. DH is 61. I am 54. Last visit to the neurologist said MCI but he has been steadily been declining. I do plan to keep him home with me throughout this journey. Finically I am not sure how I could pay for MC and still have money for the remainder of my life.

I do plan on keeping my husband at home with me as long as I can. My biggest dilemma is financial. We are in that not enough money for care and too much for Medicaid bracket. My husband is nearly 81, I just turned 68. I would be left with absolutely nothing with the high cost of placement. My husband also has copd, so that’s another factor.

My 'plan" is to have my DW, age 49 with me until the end. I pray that can be so both financially, physically, and emotionally. Full on stage 4, we'll see.

I know medicaid is different in each state but in a lot of states there are things you can do to protect some of your assets like your house. If you sell your house then it is cash available for care so it may need to be spent before you qualify for Medicaid. In some states you can put your money in a Medicaid approved annuity. An approved annuity does not count against you. You should talk to elder law attorney if you haven't. There may be options available. I talked to one briefly and found there are more options than I knew or found on line. I haven't acted on them yet but it nice to know they are there. A plan B or C.

I am also 68 with a hubby who's 76. My plan is to keep him home as long as I can. I used to tell myself he will be home until the end. I no longer say that's a hard and fast rule. He will get worse, a lot worse. I am strong and I am tough but I realize I'm not invincible. He's 235 and I can't lift him if he falls and unable to help get up. If he becomes combative or violent, the deals off. I've been through domestic violence in my first marriage and will not tolerate it again. Dementia or not. That's a hard no! I hope I can keep him home and will do all I can for as long as I can but please know there may be a time he requires more care than you can provide. It's not failure, just the sad reality of this horrible disease.

I agree. I also get resentful.

My DH had FTD and ALS. I was able to keep him home until his death. Believe me, there were times I questioned whether I could do this. Thanks to the VA, I was fortunate to have CNA help of 30 hours per week and hospice visits for 2 years to help me care for him. As I look back, I know I gave him a gift by keeping him home BUT there were times I felt a facility may have given him better care, e.g. turning him. I got very skilled by the end of his illness but it took a while on the learning curve. I'm sure DH paid the price of my inexperience. It got easier and easier the more confident I became. Also, I'm an introvert so I didn't mind not really having a social life outside the home. I had friends who visited me and DH. Again, I felt I gave him a gift and I'd do it all again in a heartbeat. No regrets! I did have a back-up plan facility, just in case. Good luck. Whatever decision you make will the right decision!

I have no idea if my DW will be able to stay in our home until she passes. I do know that she and her sister's placed their mother in MC and about 5 months brought her home with hospice to pass.