My grandmother had the most restrictive living will she could write when and where she wrote it. She had a suicide kit in her house. She was a geriatrics nurse, and the last thing she wanted was to spend her last years at work. If she'd had an option for assisted suicide, she would have signed up on the first day. She absolutely did not under any circumstances want to be kept alive, and did not want to live out her final years dealing with dementia.
She had her first stroke in public, and the hospital where she was taken (despite having her advance directive on file) did not follow her directions. They also failed to competently evaluate her after the first stroke, and eventually released her to her own care, despite the destruction of her executive function, ability to plan, and significant damage to her short-term memory and emotional regulation. She became an emotional 13 year old, with the planning and executive skills of a 4 year old overnight. But she could manage a social conversation and walk down a hallway, so they let her return to her rural farmhouse (alone) and resume driving for herself.
Over the next year she: started an affair with a married man who stole several thousand dollars from her, accidentally started four kitchen fires, got scammed three times over the phone and once by a traveling repair crew (in addition to the asshole) and wrecked two cars. Then she had another event, and ended up in a nursing home against her will. And again, the hospital failed her.
I didn't know she made me responsible for her until a distant cousin called and asked me what to do. (I live 1000 miles from her farmhouse.) I got her into care where I could be there and I have spent the last few years complying with both my grandmother's current wishes and the wishes she made when she was in full possession of her mind and faculties, while her body failed and mind withered under hypoxia because her arteries were blocked. By the time we found it, it was too late. (If she'd had a neck ultrasound after the first stroke and gotten the stents, she'd be fine today.) There was no way she could live with me; she outweighed me by more than a hundred pounds, she fell, and she got combative with family. Nor could I live with her.
She was miserable for all three years. She hated being in care. She couldn't care for herself, and wouldn't let family members care for her. She never stopped wanting her car, her own stove. She lost her speech, what was left of her motivation, her volition, her movement, her continence. She never wanted this -- she had a kit and she planned to use it, but never could. And as she failed, she got more combative, more resistant, more scared, because she'd lost control of her own mind. That's the dementia. The person she was died slowly as her brain starved, until she was only a brainstem.
She suddenly declined at Christmas. When hospice asked me what she wanted, I said Ativan for anxiety and morphine for pain. It's what was in her kit.
That doctor and that family and that lady have my sympathy. I wouldn't wish dementia on my worst enemy. It steals souls.
= new reply since forum marked as read