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My mom is 78 this year and has Alzheimer’s for 13 years. She has had a slow decline going through all the stages and now she’s bedbound, doubly incontinent, can only say one or two words, cannot sit up, cannot feed herself, has to be spoon fed a soft diet. She grinds her teeth almost constantly and she’s stiffening up all over, all her muscles feel rigid.


She eats sooo much, she’s like a fish as soon as something is put to her face her mouth automatically opens so she eats and eats whatever is given to her. She never refuses.


She's had so many infections, skin breakdown, stroke like events yet she goes on and on. This is so hard to bear - she’s been at this end stage 7 for over 3 years now and there’s no end in sight. I feel so bad for saying it but I wish she’d stop eating, she’s gaining weight if anything and it’s not going to change anything. It’ll just mean she’ll go on and on and on for more years. It’s killing me to see her like this, please I just want peace for her.


Has anyone else felt like this? I feel so guilty.

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As you have painfully learned, end of life care with Alzheimer's can be long and hard. In England Alzheimer's Society defines End of Life as "someone who is likely to die in the next six months to one year, but could live for years." Your mother certainly fits that description.
I think the suggestion that you only visit here once a week instead of every other day makes good sense both for you and for her. If the nursing home is competent and looking after her well (or even too well with too much food), it is right that they should "get on with it," just as you "get on with your life." It does not appear that your regular visits have much impact on your mother or that she will miss you that much, if at all. Given her situation, if she is being looked after well, then your responsibility is essentially met.

My own experience with my wife, now 7 and a half years into Alzheimer's and also bed-bound and doubly incontinent, still happily at home, is that she is as at ease with the carers who come into our home as she is with me. The other day, she asked me, "What happened to my boyfriend?" I replied, "I am your boyfriend! We got married." She just said, "Oh," and was happy with my reply. I did not tell her we had been married for 56 years. As you will have learned, people at the more advanced stages of dementia are time travelers who move through their past lives with strange awareness of where they are at different times of the day or week.

I have found that the more I go out and leave the carers (or caregivers, as Americans say) to "get on with it," that enables me to go out, do other things and relax. The result is that I have more energy and ability to look after my wife when I am home. Certainly, life has its challenges, but as your mother is now in a nursing facility it is their responsibility to look after. Let them do it. Don't feel guilty and move ahead in your own life, doing what you want to do. Prayer also helps a lot.
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Reply to BritishCarer
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Our mother just passed away after being at this end of life state for about 10 months.  The final stage was the one that nearly killed me to watch and support.  She had seizures, couldn't scratch her own nose, couldn't speak and had difficulty chewing and swallowing.  Eventually, after pneumonia and a couple of bedsores, she stopped swallowing and after 7 days, mom passed away from dehydration. 

Everyone talks about quality of life, but until we're in that state ourselves, we can only guess what our loved ones are feeling.  I think that as far as nutrition goes, the progression of the disease makes it more and more difficult to process any intake into nutrients to be absorbed and utilized by the body.  The immune system weakens and stress is put on all organs.

But we fed her until she no longer took any food in and hugged her and talked to her and told her that she mattered to us and that we loved her.  My heart felt as if it were constantly breaking over and over, so I understand your pain.

It seems to last forever and yet ends so quickly. Tell your mother everything that you always wanted to say to her and take time to grieve away from her bedside.
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Dianne38 Mar 4, 2019
So sorry for your loss. My mom has end stage lung disease and its truly heartbreaking to watch her suffer daily. I wish I could take her pain away and make her well. Since I can't..... I will be letting her know how important she is, and much she is loved. Its strange, but their is a pre-mourning process because I'm going through it. Yet, I'm selfish in the way I just want her to stay with me, and live. I wish healthy, but I have to accept Gods will. You all are God's little assistant angels for the continued care you give LO's. My heart goes out to the Dementia caregivers. I use to volunteer at a nursing home, and its very difficult on the caregivers of that disease. God bless y'all💗💟✌
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This sounds so difficult for you. It might be best for you to stop seeing her so frequently. It is painful for you, and it doesn’t sound as though your mother appreciates it much (or perhaps anything except food)! The nursing home should have (or have access to) a professional dietician. If your mother is putting on weight, her diet should at least be controlled to ‘maintenance only’. The carers may simply be putting in food until she stops swallowing, and that is not the way to manage a diet. But try dropping to a weekly visit. Sympathy and best wishes.
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Reply to MargaretMcKen
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Thanks all, she is in a nursing home and is being treated in the end of life care section, she’s been in care for 7 years and 3 years on end of life, I see her every other day, she has a pain patch and doesn’t appear in pain but grinds her teeth constantly. She was very poorly last summer and lost weight, her skin broke down all over her body, lesions and blisters and she ha to be catheterised but that was removed a few weeks later.
since then she’s settled but the carers seem to want to keep feeding her, all it does is prolong her misery. My heart is breaking for her so much and I feel guilty that I want her to pass. I can’t cope with the thought of another 3 years of this. It’s been 13 already.
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NeedHelpWithMom Mar 4, 2019
Wow, so hard seeing the suffering.
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Oh, I'm so sorry to hear what you're experiencing for you and your mother. It's difficult to understand why things turn out this way. I too, would explore Hospice. They have been a godsend to me and my LO. She is in a similar condition as your mother, but, is not bed bound yet. Is in wheelchair. It just seems so unfair. I don't understand it.
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NeedHelpWithMom Mar 4, 2019
Sunny,

How do you know when a person is ready for hospice?
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I agree with visiting less often. Don't feel bad - many here have wished for their parent's suffering to end. Our final years can be very difficult for us and for our families. It is what it is. She is getting the care she needs. Look after yourself.
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Momsgal; This must be so awful for you on so many levels.

Is mom on Hospice? Have you asked her doctor about that?

Is mom in a facility or at home?

Sorry for all the questions, but I'm trying to get a clearer picture.
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Reply to BarbBrooklyn
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Momsgal
My heart hurts for you.
No, I have not gone through what you are going through.
Im sorry she is going through this. I wish you weren’t.
Is your mom still in the NH? Is she being over fed? How often do you go to see her? Is she in pain? Does she recognize you?
I’m not sure what I would do in your place. I don’t pretend to know.
I can understand why you would want to hear from others who share your experience.
I do know that your life matters too.
I wish you great peace.
Hugs to you and your mom.
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Reply to 97yroldmom
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Do not feel guilty! You have been on a long and hard road, not many would last as long as you have. I used to pray that my father wouldn’t have to go through the bed bound stage for too long, he didn’t. Of course now I feel bad sometimes because his last three weeks he suffered with a broken leg from falling out of the bed. It answered my prayer but it sure was hard on him. I don’t let myself beat me up though because I know that I did the best I could do with him while he was alive.
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Reply to Glendaj2
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Is mom living with you? Either way I'm sure your always where she is. An actively present daughter, just like myself. Wish I could give advice, but I'm in a nearby similar boat. Except my mom is only 68, but has end stage lung disease. And watching this slow hell has all but put my spirit out with a fire extinguisher. Its awful to watch your mom suffer, and ever so slowly, diminish. Some days I don't know how much longer I can witness or deal with it. Drawn out to some of these horrible diseases is just an understatement. I only hope when its my time, its much quicker process. Will keep you in thoughts and prayers. Hang in there and just deal with a day at a time. Or a minute at time, if needed.✌💝💞👍
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shad250 Mar 2, 2019
OP said she is in the NH in the end of life section.
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