Well, what I have wished for, for more than a year is finally here. And I'm so not ready for this.

[mnhtnbb]

31. My father stopped eating/drinking

at age 91. He was in a skilled nursing facility, confined to a wheelchair,and had lost ability to read, change channels on TV, push the button to play the radio or a CD, and needed help feeding himself. He had developed a postoperative dementia after a hernia repair two years earlier, shortly before my mother died. I moved him across the country from California --where there was no more family --to North Carolina where I live. So, no friends to visit him here.
He had signed an advance directive, which included his right to refuse a feeding tube, and when the nursing facility called me to ask to put one in, I told them 'no'. It was the one thing he could control. I happened to be out of town with my husband for him to attend a medical conference. I flew home immediately. He became comatose before I got home.
I sat by his bed and read to him, talked to him, shared memories of growing up with him for two days. Went home to fix dinner for my sons and to rest a bit before heading to the airport to pick up my husband to take him with me to see my dad again. I got a call from the facility to come quickly. He had regained consciousness. In the 20 minutes it took for me to get there, he passed. He was not alone and even though he couldn't respond in the days I'd sat with him, I believe he knew I was there.
Lewy body dementia is horrible. My husband --an MD--was followed by a neurologist well known in the field for it as a possible diagnosis for two years. It can really only be diagnosed on autopsy, but a probable diagnosis can be made based on observations. It is hard to diagnose in early stages. Robin Williams had it. When my husband was given the probable diagnosis, he refused to accept it. I had tried to get him to agree to buying a place on Bonaire, which is Dutch, and has legal medically assisted suicide. He refused, because he would not accept the diagnosis. He had all the symptoms, and there were mornings when he'd sleep so late that I hoped I would find that he'd passed during the night. I could no longer share a bed because of his violent acting out of dreams. He would strike out--he did hit me a couple of times --broke the bedside lamp, threw himself out of bed, would sleep walk, and have no memory of any of it. He eventually did kill himself six years ago in the retirement home where he was living. We were separated and one of my sons was looking after him.

It's really hard not to feel guilty. To think you could or should do more. But you can't. It's a horrible disease and it's not wrong to wish for your mom to be freed from it. She will become comatose soon--without food or water-- and probably not last much longer.
Take care of yourself. I wish you peace as you spend these last few days with your mom.