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

My DH passed away last month and I had him at home. He had only been in hospice care for two months and I took him to the hospice respite center a week before Thanksgiving so I could have five nights break. He walked in with his walker and seemed just fine but they think he had a stroke there and had to come home in an ambulance. I had his hospital bed set up in the family room so he could be right there with me. Hospice told me we needed to keep him as comfortable as possible the final few days to a week that he had left. Our cat was by his side the whole time and he passed peacefully six days later. I'm comforted I did everything possible and that he was at home where our friends came to say their goodbyes. It's a decision only you can make. There is no wrong way.

Finished the 8 year journey with DW, she passed away quietly in her sleep, at home, under my care earlier this month. She was 61, had EO FTD. Seemed to have gone through it all; Trust, several mental health and hospital stays, bad reactions to meds, family on her side stealing, 16 months to get SSDI, probate court, (all the crap that goes with that in fees, filing financials) for a conservatorship necessary to represent her in a lawsuit against her sister her sold her property in a foreign country after she learned of her disease. Last 4 years here, needed help with all her ADLs. She was fully ambulatory right up to the end. Walking around all day, sometimes yelling. But there were moments she smiled, sat beside me on the couch and dozed off with her head leaning on my shoulder. In these quiet moments, when the agitation abated, and the fog of dementia would lift, just enough, she look look up at me, while on the couch, and reach her shaking hand out and touch me, quietly murmuring, “I love…love”. Any understanding of me as her husband had long since past away years ago. She was also do this with her caregivers at home. For me, it was her sweet and kind spirit, still reaching out, and for me, I lived for these moments and she was this way right up until I tucked her into bed, waiting quietly until she fell asleep, (as I done so many times these past years). I’ve been told it was a blessing she died quietly this way, suppose it is, the long good bye is over. Yes, it was hell, but for me, I’m still grieving and a strange quietness fills the home now, that’s painful. This was abate I know, I’m planning trips and a future now, doing what I want and whenever I want is completely new and looking forward to that. Looking back, for me, though the disease took everything physically and mentally away from her, I witnessed her spirit, untouched, still coming through, and was still able to find ways to connect with that until the very end. Rough journey but I’m glad I stayed and she’s now at peace.

All I can say is, "DITTO." My DH is 83 and I'm 82. He's 5'11" and I'm 5'2." He has severe Alzheimer's disease and Lewy Body disease. I'd say he's at stage 6. The sheer exhaustion of being ON 365/24/7, multitasking constantly, handling all the household duties, 3-4 loads of laundry every day (and I do have help), the loneliness and isolation are taking their toll. I'm about to transition him to memory care and I fully believe it will be better for him—socially, cognitively, and physically. I wish it were otherwise but wishing won't change it.

I am determined to do the same for my husband. He is also kind and gentle. Probably late middle stage.We have a modest 2 story home. I struggle to keep it up as nicely as we used to together. Also, though he is not combative, he is not himself. He’s distant, uncommunicative, unable to have a conversation. I cook good meals for him, make sure his meds are taken on time, dr appts, plus maintain house, clothing, car, finances, it is a lot. I’m in my 70s. He is in his 80s. I find it difficult to sleep with him, though he is more content when I do. I miss the spontaneous affection and it’s torment to be with this shell of a person who looks like the man I’ve loved for 40 years. I have trouble sleeping period. Am trying mindfulness, Bodhisattva training , hot baths, exercise when I can. I still am awake at 4 am feeling like I’m drowning.