When Hospice?

Hospice would deny you care/help. They are for end stage and your DW would not be considered that. My MIL was bed ridden, couldn’t speak or comprehend anything. But her body was very healthy. Hospice finally came in when she began having more and more difficulty swallowing. By that time she had been immobile for two years. My FIL did create a system to get her out of bed and into her wheelchair daily, but she was incapable of doing anything on her own.

You can always request a hospice evaluation but I suspect your LO would not be accepted. Hospice is largely for physical decline, not mental decline or emotional/behavioral issues. My DW has been on hospice for over two years now and is very, very near the bitter end, Stage 7f, of this awful disease. The primary benefit has been additional nursing oversight and the hospice doctor who is very familiar with dementia patients. They provide aides with useful expertise in bathing and feeding. They do also provide additional services, like a music therapist, and a social worker, which is nice but not essential to her care. Hospice also means that you agree that your LO will generally not be provided with restorative medical care, just palliative care for medical conditions that could lead to your LO’s passing.

Ask to have her evaluated. My mom was denied the first time she was evaluated. However they called two months later to reevaluate her. They’d had placed her on a two month re-check when evaluating her. It was questionable whether she would be accepted that second time, but she was.

Mom was in a AL. She used a walker, fed herself. She did need help showering ( direction I think). She was incontinent. The staff helped her pick out her clothes/ but I know she could dress herself because I had seen her do it. She had recently been put on oxygen.

The hospice nurse did not expect her to die in six months. The reason she was out on hospice is because she needed extra help and would benefit from hospice visits. Unfortunately mom did die a few weeks later because she quit eating once she found out she was on hospice. We could not convince her that she wasn’t dying.

When you have her evaluated, do not sugar coat things to the intake nurse. If you occasionally have to help with something / then you describe it as having to help with something. The staff member who helped answer questions the first evaluation kept saying mom did things herself. The staff member the second time was more experienced and told the unvarnished truth. ‘I have to tell her to use soap in the shower’ etc.

I went to a small meeting with a speaker talking about hospice and palliative care at the MC that my wife is in. I was a little disappointed in what she said about palliative care. She said what they do is support the team already in place through digital means, that after the evaluation there wouldn't be any dr or nurse that would regularly see her. They do provide a social worker, which I don't know what that would do. She did say that if my wife met the criteria she could get hospice care. That the idea of it being for the last 6 months of life is not gone by for people with dementia as long as they meet the other criteria. I am considering it just to get a different dr or nurse to come to treat her. The one that comes to that facility is not very good and the in-house nurse is rarely available or even on site and never on the floor and it would be almost impossible to get my wife in and out of the car. I would have to rent a wheelchair accessible van every time she went to the doctor.