Mom is 92' has dementia, past seizures, cannot walk because she refused surgery and PT for a fractured kneecap (from osteoporosis). The staff says they do not wash her crusted eyes or get her up to rinse her mouth before breakfast because she gets agitated! So what! everything agitates her. They change her brief and clean her and she gets agitated. She gets agitated when it is time for her seizure meds or pain meds. She is on anti-anxiety meds, is losing weight because she cannot chew but hates puréed food. She sleeps about 18-20 hours a day. Let's face it, she is dying. I asked them to clean her eyes and let her rinse before breakfast ( she only eats 2 tablespoons of cream of wheat). They argue that it is comfort to let her sleep. However, when I am there or some of her usual aides, we just gently wake her,tell her it is time to wipe her eyes and we let her rinse with fresh water and a little mouthwash and she loves it. Hospice says it is part of comfort care not to agitate her. Just let her lay there and rot? I have to be there as much as is humanly possible just to see to her basic needs. Am I being unreasonable? I do not believe in force feeding her, that is not what I am talking about. Just basic cleanliness and dignity! She is still able to drink thickened nectar and seems content with just that, no food. It is so painful watching her be so miserable. I cry myself to sleep at night. No one else visits her, she was not the most pleasant person in her lifetime. My sons and grandchildren won't even visit. Has anyone else had this type of experience?
Please let the professional team from hospice do their job, they have seen many many patients, and you have seen one, your Mom. Departing isn't easy, just let your Mom be comfortable, don't try to extend her days as you will want her to be at peace.
The thing is, my mother is an easy sweetie pie compared to some little old ladies like the one who bit my daughter in the ER where she worked. And I suspect that the operative phrase as far as your mother is concerned is that my mother's process 'didn't take long.' They'll do it their way, which is short and sharp, but if she won't go along with it they won't do it at all.
It sucks, actually. Where is there time nowadays for gentle and soothing nursing care? I don't know what the answer is, I'm afraid. I think you might have to be content with being the angel who visits and makes her extra comfortable, and take your consolation from that. It is not your fault that the world seems to have got rougher than we remember.