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In reply to the discussion: "But They Are Dying." Hospice physicians like me can't usually offer patients the care they need. - Slate [View all]NCgayguy
(42 posts)Just few months ago, Tommy and I went through this. He entered Hospice care in our home on Dec 22, 2024 and he passed away Jan 1st, 2025. Hospice at home is what we chose. After a year and a half of battling cancer that had not yet been found until Nov 2024, his health deteriorated quickly. Having had the worst of worst strokes in Jan 2019 and nearly fully recovered, the cancer brought back his stroke impairments rather quickly towards the end.
I can't speak for anyone here but me. Everyone here is going to have an opinion. All I can do is tell you about my experience with Hospice, Hospitals, Doctors, PAs, Nurses and Nursing Assistants. What I will tell you is that the majority of healthcare workers in all areas should not be in the industry. The dedicated and genuinely caring health care workers are severely overworked and carry a heavy burden.
Hospice was 100% covered by Medicare for Tommy. We were fortunate.
Tommy wished to pass at home. We agreed on it. We both knew what hospitals and "institutions" for are like. There was no way in hell I would allow anyone to ignore, mistreat or just make life decisions that benefited them and not him. Hospice came to our home for an hour a day and prescribed pain meds. That's it, that's all they did! They said someone would come help bath him but no one ever did. They said a doctor would come by, he never showed. When I needed to call them, their office line was always difficult to deal with because it seemed every time was a different person who had to prove Tommy was actually their patient. I did not sleep for days before he died. He needed pain meds every 2 hours. Every 15 to 20 minutes I gave him water through a medical dropper and put moisturizer on his lips because I promised him, he would not die of thirst.
My Tommy died in my arm, in our home, in the early hours of New Years Day. I held him for the longest time after he passed. I cried and talked to him and when I finally laid him back down, I undressed him, bathed him his last bath, changed the bed linens and blankets, then redressed him. It was the hardest thing I've ever done in my entire life and the most loving thing I've ever done in my entire life. No one was going to take that sacred moment away from either of us. NO ONE WAS GOING TO HAVE THAT LOVING PRIVILEGE BUT ME! My Tommy deserved the best and that was going to come from me come hell or high water. He deserved no less.
Hospice works for some and not for others. I guess having been through all the medical situations we did over the last few years gave us true inside look into healthcare that most people know absolutely nothing about. They can only guess.
In the end, all I can say is you have to include your loved one in the decision making. Only you and your loved one truly knows what's best for you both. Just know that my heart breaks for you both when that moment comes, truly! I know the real pain you will feel and it's unavoidable. Know you are in my thoughts!
May You All Be Healthy, Safe and Happy!
Reis, Tommy's Loving Husband
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