How long can she go on, this is killing me...

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How long can she go on, this is killing me...

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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.

Alzheimer's & Dementia End of Life

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The entire care giving journey is a constant roller coaster of emotions. Bending over backwards to attend to others wants and needs, with your own needs in the rearview mirror half the time. I like to think I'm strong willed and can handle it all, because I am doing it all currently. I've been hands on with my mom since she left rehab in July. She was there a month and couldn't walk out on her own. Not sure what the guidelines are there, but that's another story I suupose. I try to remember to just be angry as hell at the disease and not my poor sweet mom. I love her to death, I really do but when the family dynamic completely flips, well its taken a toll on me. Caregiver burnout? Maybe. Just fed up? Definitely. But, I made a vow, to myself to see mom until the end. I hope my end isn't first, but I will continue on, because I feel like its the right thing to do. Unless, it becomes medically impossible, then I will be here. Its nice to just get on here, and let it all out!!! I'd like to find a local in person support group so I'll be checking into that. Plus, mom had finally agreed to in home therapy, so that should help to. I wish all the caregivers, nothing but pure joy and blessings outside the carer role. Its tough, but we are tougher. No disease is going to chase me away from my mother.Best wishes and please keep me and mom in prayers. Kinda going through a tough time with all on my plate.thanks:)
Love and Light, Kelly

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I am so sorry that you're experiencing this with your mom. It is heartbreaking to watch this from a distance with a close family friend, I can't imagine how hard it must be to watch your own parent decline like this.

There is no reason for you to feel guilty. You want to see your mom released from
her body which is mostly shut down but still retains some reflexive functions like
eating. I doubt too whether she would want to remain trapped like this or wish you to suffer as well. I wish I knew what to say to help ease your suffering
This is exactly the scenario where we all wish we had more options not only for our parents but for ourselves when that time comes.

Best wishes to you, please take care of yourself!!!! It is very stressful to watch your parent decline so severely and slowly. ((((hugs))))

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Momsgal, this is a tough question to read, with tough answers to read! I have been on a long road with my mom - 5-plus years of intense care/managing - yet I am nowhere near where you are. And I am barely hanging in there! All I can add is that you have to cut yourself some slack. No one should have to endure continuous, ongoing emotional pain. Reread the suggestions and give yourself the time away - physically and mentally - so you don't go over the edge. You have done everything you can. Suffering emotionally will not make the situation any better and will only break you down. Time to protect and nurture yourself.

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Such nice, thoughtful, helpful and caring advice!

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The problem with dementia is there is no end in sight. Death by inches. So hard to watch the suffering. My mom has random words, non-ambulatory, double incontinence, pureed diet. Has lost over 50 pounds in 6 months but all vitals still in the normal range. In hospice for 8 months and counting. Ugh.

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So sorry for all your going thru. Its no easy task! I'm so thankful, we have this forum to support one another. I can't count the laughs I've had, or the "me too" moments. Dementia is a untamed beast, in so many forms, and stages. Hang in there and prayers sent:")

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Hello. Sounds like you need to search local hospice companies for "palliative care".
She can remain at home , monitored by a medical team, support for you, and she'll be comfortable.

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I feel for you and I can relate. Mom is 97 and I’ve been caring for her for 8 years. Stages move so slow. She goes in spurts not eating then eating everything that isn’t tied down! Her fingertips turn blue along with her fingernails and she sleeps excessively. Please do not feel guilty. It’s extremely difficult as a caregiver to see your loved one go through this. All you want is for her to be at peace and to end the confusion. Their poor little minds!! I often wish I could look inside and dispel that confusion. I feel for you and wish I had answers.

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I went thru this with both my parents at the same time. It is very painful to watch this happen to a loved one. God works in strange ways. I chose to take care of both of them at home. it is what dad wanted.. I cant explain how I did it as I was already taking care of my husband with Parkinsons Disease . I learned to enjoy the good and forget the bad. don't ask me how but I did. I would go to bed smiling at something they might of said or something they might of done. When I was able to get them into the same room it was so funny how they behaved with each other. some days they knew each other, and other days they would talk and talk and talk about who knows what.
Don't be hard on your self. Your wishing and hoping that things would be over is normal. its not for you but for the one you love going thru it that makes you want to see her pain end.
don't be so hard on yourself. you are a wonderful person to be there for mom and mom might not be able to speak it but I believe that she thinks it every day.
love mom and enjoy the time she has left. even if its just holding her hand. she knows your there and loves you so much for that.
your in my prayers.

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Lizzy,

You are amazing! I’m caring for my mom with Parkinson’s. It’s hard. You also cared for your parents at the same time, whew!

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When we were going through the last weeks of my mom's life once I was sitting there & thinking we were more humane to our cat who had died weeks before -

Our cat couldn't get up anymore & I would bring her some water - then hubby & I decided it was time so I picked her up & cradled her in my arms then held a towel gently to her face - she stopped breathing peacefully - she died less than 20 feet from where she was born at age 16 with a sense of dignity

What I feel you are saying is that you wish your mom could go with some dignity because she has little now - by the way I miss my mom but I do not mourn her as I had pre-mourned her at every level of function she lost - you may feel the same way when her time comes so don't feel guilty when she does go & if all you feel is relief for the both of you

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I believe I can relate to this posting. I was just contemplating this subject this a.m. Mom is VERY SLOWLY fading. She gets feisty, and that may keep her going. I had recent ER visits for her on pain on left side breast and back. I showed ER doctors and they did not even know! Turns out primary Dr. says they are Shingles!!!! Upset to say the least. Mom eats all and everything. I really have to watch this kind of eating. She weighs 170 now because she lost 6 lbs in recent weeks. I cannot continue and it's a matter of my decision. I'm only child providing her 24/7 and I had a serious auto accident in 1998. So I know she needs better care or more care like 2 persons to get her off floor when she winds up trying to sit on bed or her recliner. She does not target her place she will sit, and winds up sliding off. I get help from fire dept to lift her up. She is in about 6th stage advanced Dementia/Alzh. She is also permanently on Warfarin for history of 2 lung embolisms. Now with her having Shingles! I have been pretty overwhelmed...........

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My mother in law had alzheimers and recognized me as a friend when i visited every tues ... but not when i visited twice a week.

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I would double all the things being said about how hard it is for you and what a tough situation it is. I write not to give encouragement, as there is plenty here, but to offer the comment that since she is bed ridden and fairly obedient as to eating, it should be reduced to a healthy amount because being overweight can only be not helpful for her as well. I wonder at my being the first to mention it. Her diet can be controlled. That and your visits are the best things she's got going for her (oh, and the care of the ppl that work with her.) Love ....

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I believe this is the end stage of Alzheimer's. I knew one gentleman who had this horrid disease and passed at year number 13 on or about. God bless You!

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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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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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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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I will add that sometimes visits are just too difficult on a family member. I know that my parents no longer visit my cousin who is in End stage of dementia in MC and on Hospice. It upset them to see her that way and they already suffer with serious anxiety disorder. They talk about visiting sometimes, but, they know they just can't and it never happens. I go when I can, but, I don't think going everyday would be something I could handle either.

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It’s hard, Sunny. When I would visit my godmother she didn’t even know who I was. She would continually say, “Who are you dear?” She enjoyed the visit but had no clue who any of us were during her final stages.

She was so far gone, that when Hurricane Katrina hit, she thought the NH was taking all the “old folks” on a nice trip! She had no idea it was an evacuation due to a major storm.

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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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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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OP said she is in the NH in the end of life section.

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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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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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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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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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Sunny,

How do you know when a person is ready for hospice?

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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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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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How long can she go on, this is killing me...

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