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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?

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I think Jeanne is on to something. I remember feeling very alarmed when a pack of nurses and health care assistants barged into my mother's hospital room and set about washing her. When I asked them to go easy I was asked quite rudely whether I wanted her washed or not. I did, so I piped down and let them get on with it. Well! It was a bit industrial, and she was squeaking a fair bit, and I was quailing in the corner, but it didn't take long and then there she was all clean and shiny.

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.
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Why does she get agitated when hospice tries to clean her eyes, but "loves it" when you do it? Have you see how they try it?
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I am going to agree with AnOnlyChild on some of these issues. I do understand Hospice care philosophy, BUT, if I were laying in bed in a terminal state....or ANY other state, crusted eyes would NOT be comfortable and neither would a dry sticky mouth. So I think you are right...that some basic comfort measures need to be done a few times a day, gently as you describe doing them. And as for the sons and grandkids visiting .....I pretty much believe that the family should do what the wishes of the patient are. Some do not want relatives to come visiting. but if she is asking to see your sons or the grandkids, then I believe that everyone who is adult aged or close to it,should muster up the strength to make one final visit to her just because she wants to see them. It doesn't have to be long or involved....but to make her happy, hold her hand, give her a kiss and tell her she is loved sounds like it would be important to HER. She is the one who is leaving afterall.....it's probably some kind of closure she needs. And perhaps she knows she's not been the most pleasant person and she just wants to say she is sorry and SHE loves them? Can she talk, communicate at all? To decrease agitation have you tried music....playing or singing her favorite songs, hymns etc.? Would she possibly calm down with a visit from a pastor. Perhaps she is afraid of the process she is traveling through you know, and that is part of the agitation.
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This must be so terribly hard to watch your mother in this state, my heart goes out to you! I expect that the hospice providers see that the benefit (looking "decent", cleanliness) comes st a terrible cost to your mmom's mental state. No one deserves to be agitated when they are dying. Consider the cost to her peace of mind and proceed from there.
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Freqflyer, I must have given the wrong impression. I do not want to prolong her days, just give her the normal cleanliness she deserves. My sons are old enough to man up and see her as she has asked for them several times. The great-grandchildren I can understand...at least the older ones (teenagers) visited her twice in the past five years. I believe my sons will regret not visiting one last time when it is too late. Thank you for your advice.
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I realize that this must be extremely emotional for your to see your Mom in this stage of her final chapter. It seems part of this emotion comes from the fact that your sons and grandchildren won't visit... could it be they want to remember their grandmother and great-grandmother as she was before?

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.
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