Thank you. This is helpful. I'm sorry to hear about your diagnosis. I hope you're taking good care of yourself and you have help, too. <3 sending love

My deceased husband had Parkinson's dementia. Now I have PD myself, but no dementia as yet. My husband knew his thinking was not normal, but it got to a point where I finally called an ambulance, then rehab could not work with him; I brought him home on hospice care; he died about 5 days later. He was very clear throughout our marriage that these were his wishes, and he wrote them in an advanced directive. A few days later., I found an old card he had signed many years before from a pro- euthanasia organization in New York saying, if euthanasia was legal at the time of his death, he wanted that.

It was not legal, but mother nature knew what he wanted.

Still. hospice at home , was the best decision for him; he stayed in his lounger all day. To put it honestly, he slept through his dying and I do believe he did not suffer. I was sitting next to him, and he was sleeping. I left the room for 5,minutes; when I returned, I noticed he seemed different, and I knew he was gone.

Hospice meds helped him. By then , he rejected food and was unable to speak, but in the moments he was conscious, I know he could hear and understand. Everything was calm and peaceful for him.

I can still take care of myself, prepare something for the microwave; my daughter helps with shopping and cleaning . It works now. Who knows what the future will be?

Based on being a caretaker for my grandmother, mother and father and husband. all deceased now from old age.

My answer is you will know when that time comes. But don't wait until you are burnt out. It gets to a point when you know the situation is unbearable for you and not good for him.

If he is on Medicare, check what benefits for in home care may be available. If that doesn't work, look to family , neighbors and friends to each take a turn.

Also. be aware that if he goes to hospital, he will be entitled to 21 days in a rehab covered by Medicare. But he must go to rehab directly from a hospital stay.

I hope this helps. I was in the situation you are in now. Now I have PD; cruel coincidence. Good thoughts from me to you.

Best,
Andi60

Your story hits home. So sad-So truly expressed.

I understand, it is very difficult for people to ask for help. They believe their children should step up. That is when I remind myself what and where (stage of life) they're in, in their own lives, my daughter has three boys the ages, involved in avarious activities, she and their dad work outside the home, they also must prepare meals, wash clothes, clean house take care of pets, scoop snow, working, etc. She lives in the same city. We taught both our children take responsibility for their lives. Our son who never married, live miles away , has a very strong work ethic, comes to visit when he can but has a home that need maintenance, and must take care of himself, bills, etc. Eventually caregiving 24/7 will takes a toll. If she gets ill...what happens could be much worse thAn asking for help from friends, pastors, outside of family. Care giving is tough enough for nurses or CNA but they have breaks and down times, are not family. I can stress enough how important she find someone she can speak wither her mental well being. Keep trying. Sorry🤔