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Yesterday was a really bad day for my mom slept most of the day when it came time for dinner could hardly get up tried to go to the bathroom sat on the toliet forgotton to lift her robe and nightgown up sat down couldnt eat just stared into space shes been battling dementia for abut two years and each day just gets worse its getting harder to watch the decline the woman I knew is gone and I have to ask why is this still going on shes 97 and has had a great life so why does she and everyone else have to keep going on like this things are only going to get worse each day .

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Hi Trunner,
No it's not wrong. It's normal. None of us likes watching suffering. Your mom is 97 and likely very tired of it all. Some people have strong hearts and they just keep going even when the rest of their body is failing them.
You are rightfully tired. Please try to get others to spend time with your mom so you can get some respite. There will eventually be an end to her suffering and yours. When that happens, please don't harbor any guilt about these thoughts you are having now. I repeat: your thoughts are natural and nearly any caregiver in your shoes would have the same thoughts.
Take care of yourself,
Carol
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Alzheimer's is the most horrible disease there is. You watch your loved one die twice. How much worse can that be? My mother has been at death's door more than once from other physical maladies but has come through. I was hoping she would not have to suffer from it all anymore. I know if she knew what was happening, she would want to just go in peace. I want that for her so much. The other day I was told that the doctor wanted my mom to have B12 shots so she would not sleep so much. Really? Are you serious? I said, "So she would get these shots so she will be in better health when she dies from Alzheimer's?" Give me a break. if I thought I could just put my arms around her and hold her until she passed, that would be my wish for her. Hugs
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I keep thinking that we wouldn't think of putting a beloved family pet through what my mother is going through.
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Your feelings are your feelings; they are not wrong. If you are crossing over in to some dangerous mental territory or thinking of doing something that is illegal, please get some help for YOU.
I think sight has been lost about how long and why we are keeping people alive for so long. If a person is not on every heart, bp, cholesterol, etc. med they can get their hands on and palliative care is what comes first people would be allowed to live and to die more naturally and still pain free. My grandmother, who I adored, died of a blocked bowel at 83. She was still in her home, although she'd broken her hip two years prior she still was able to drive, keep her home reasonably, cook in her kitchen and garden in her yard. We all helped her with yard stuff and getting her out, etc. but she was self sufficient. Two days before her death my 16 year old daughter and I stopped by and borrowed a necklace for her to wear to a dance. So except for a growing 'green apple belly' that weekend, before it got mortally threatening, she was living a real life.
When she needed to be rushed by ambulance on a Sunday night to the ER she asked that they not turn on the siren so as not to alarm her neighbors! The condition, likened to a 'heart attack to the bowel' took her life within 36 hours and she had a DNR and a living will. So there was no corrective surgery and she was well medicated to handle her pain. She also loved her red meat and had a steak when she wanted it before she passed away. If she wanted pie she had it. Her weight was right for her height because she was reasonably active, although she had terrible arthritis and a bad back.
Here's my point. She took care of her health and was on little medication and died having lived a full life until the day almost that she passed away. There were no nursing homes, urine bags and catheters, diapers, nasty institutional food, no body screaming senselessly down the hall lying naked and tied down to their bed. Which is the kind of place my 92 year old mother in law, who has her senses but whose body has quit for the most part on her, is stuck. And she is on two bp meds, Crestor, something for her chronic UTI's, can't see to read, can't hold a pen to write, and has none of her favorite furnishings around her that were in her home of 52 years.
From all of this I take that at about 80 I am going off any life prolonging medications and eating as much red meat, drinking as much red wine and doing what makes total sense to me. Dying is a PART of life. I think sometimes the medical community has forgotten that, or they are afraid to be sued. The big lesson is to be proactive and plan how YOU want to live, and die.
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Modern medicine works extremely well towards keeping folk alive. The thing is most of the time there is quantity of life, but hardly quality. This being the case, there is a huge & ever-widening gap between a society's abilities to provide appropriate aged-care and the available and willing carer's. We are simply not prepared for it and yet, it's here. More and more family are being called upon to take over the responsibilities of caring for aging parents, and in todays world, these surrogate carer's have less & less time available due to modern day restraints.
A few decades ago, parents died at a much younger age. These days we find ourselves bound to parental care. What are the solutions? I don't have any, but I know it's a problem area that's spreading at a rapid rate. In my country, the aged are surpassing what little avenues are available....and even these avenues don't work for nothing. Everyone has to get their cut! Oh yes, there's good business for cashing into aged-care these days. Come one, come all!
Surgeons don't even blink an eye at heart by-passes aged 80 and over. Gosh! We didn't even survive to that age not to long ago, so where will this all lead to?
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Trunner, it's not wrong to want it to end. We want any kind of suffering to end, whether it be theirs or ours. That thought goes through my mind nearly every day. My charge is now critically ill and I wish she wouldn't have such a hard time trying to leave this earth and would just go ahead and pass on so we all could just breathe a sigh of relief and get on with our lives.
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The beauty of getting MEDICAL POWER OF ATTY AND DURABLE also is that when it comes time to decide about surgeries or feeding tubes - things that will just cause more horrible pain to the very aged and weak - you CAN SAY NO to the doctors. It is the law that hospitals and doctors do everything possible to keep everybody "living" if there are no such documents in place. Also a DNR (let em go) is a good document. I had all of those signed, etc. many years ago at my Mom's request.

Of course now she remembers none of that - I have placed her in a nursing home as I am handicapped also and can no longer care for her or keep her clean, etc. - but when I go to visit,, she thinks she's just been there a day or two at the most and begs to go home. (And home is with her Mommy - not at the home she has lived in the past 67 years or so and reared her children in, etc.) So even if I do take her home,k she still begs to GO HOME.

I feel no guilt about wishing her torment and confusion - anger and hurt would end as well as her physical pain. Her heart and lungs are working strong but the mother I knew has long been gone and this VESSEL carries only a struggling remanent of the Mom I knew.

It distresses her, me and the staff when I visit as she obsesses about "going home" over and over the rest of the day/evening. Accuses everybody of turning against her, wanting her possessions (which amounts to nothing money-wise) The hardest part is the hate in her eyes as she beleives what she is saying at the time. I've steeled myself not to feel guilty to wish she'd peacefully leave this earth - she's almost 95 years old and not really living anyway.

So be patient and be kind to yourself upon her passing. Don't cause yourself to have a stroke or heart attack or nervous breakdown trying to do something you can not do - especially bring her back to herself....

Good luck and know you are understood.....
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So many good comments here, as usual. We have been in the same situation with my MIL who has been unable to be on her own since her husband died nearly two years ago. She seems to enjoy nothing, could not tolerate adult day care when we tried it, which we had hoped would reinvigorate her a little. She also spends most of her time sleeping, and that is when she seems the most at peace. I have to wonder if it is not a transitioning towards death, and wonder, too, what she experiences in her dreams or whatever goes on during sleep. But she is awake a lot, too, and during that time, is up and down, restless, aimless wandering, agitated, despite being on medication which actually has improved this condition; she was much worse last summer before getting her current regimen in place. What bothers me the most about all this is that she seems to be aware, somewhere inside her, of her deficits and decline, but cannot express herself or do anything about it. I think it would be easier to watch if she seemed to have no self-awareness of her condition. She appears to have no physical pain, is ambulatory, eats well, and at nearly 93 would be able to do much more if it were not for the Alzheimer's. She has one remaining sibling,out of 9, a sister who is 98. This sister has been in a nursing home for the past 7 years, did not want to go and has been miserable in there every day since. However, she also seems to be in basically good health, no other illness or conditions, not even Alzheimer's; she was just beginning to have little incidents at her house when she was living alone, and her family decided she needed to go into a facility. It's ironic, because the only thing that has happened to her since is that she fell and broke her hip while in the NH, so is now confined to a wheelchair or bed. What seems to be complicating the aging situation is that once someone gets beyond 85 or so, without any terminal illness, even though the rate of Alzheimer's and other dementia-related conditions increases greatly, the body seems almost to go on autopilot, and unless there is a fatal accident or serious infection from which they cannot recover, they can go on and on, regardless of whether that is what the person would have wanted. My MIL and her sister both had DNR's and living wills put in place many years ago, but probably neither anticipated their lives would become endless days of what they are now experiencing, despite the documents. I don't know what to think most of the time. I wish I could know what goes on inside them, their thoughts and feelings, so that maybe I could figure out a way to at least provide more comfort, especially during the sundowning.
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It is not wrong. I think it is the most natural thing in the world to want the suffering to end. I read a blog once written by a man who was watching his mother slowly die of Alzheimer's. He asked an important question about is it right for the healthcare system to prolong life when the quality of life is what he was seeing in his mother. I understood what he wrote, but had no answers. When do we know it is time to stop forcing food and medicines? Why should we administer fluids in the hospital when the life has become torment? Why treat infections, etc., when all that is left is a tortured remnant of the person that used to be? I don't know, but many people can live such a long time with this terrible disease that several victims are taken during its course.

It may sound empty, but take care of yourself trunner. Do you have help with your mother? It makes it so much easier when there is support and love around you. I know that you miss your mother. I like to think that they will be happy and whole again on the other side. It is what I hope for my parents.
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I can relate to your problem as my wife has had Alzheimer’s for several years. I have watched her decline and it is sad. My conversation to myself is with the understanding that if our roles were reversed she would be doing as I am.
There are many challenges and fortunately an equal number of solutions. The thing is, this disease is dynamic instead of static so events are changing all the time. I currently set a timer for whatever my wife’s frequency is (3 hours during the day and 4 hours during the night) and assist to ensure that it is done properly. Although inconvenient it saves a lot of unnecessary work and wasted time.
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