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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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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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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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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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trunner0...i feel for you! read my last post in https://www.agingcare.com/questions/deal-with-a-narcissistic-mother-149593.htm?cpage=0&post=1&cm=183712&z=1#183712

The circumstances are different but the feelings are the same.
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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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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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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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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 think its all about the money that can be made NH Assisted Living Caregiv ers Doctors they all what more dollars they dont really care about the patient theirs a profit to be made on these oldd people who cant do for themselves I just got an ambulance bill !9 hundred dollars for a five min ride REALLy
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You are so right about that. This country is in deep do do when it comes to healthcare. The system is broken. It is all about money and malpractice insurance. A big CYA.
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Yes Turner, you are feeling what we all have felt at some point. You can only do the best that you can, and charrish each and every moment. Because when she is gone you will think back on not this time, but all the times in the past where she was herself, not who she has become. It is just like a women giving birth, while she is going through the process it is very painful, but once it is over, all she can remember is the miracle of the experience. Remember the experience of a wonderful loving Mother. Charrish the memories. And remember it won't be a long as it has been. Keep the faith, keep your chin up, and don't you ever feel bad, you are only human, and you love you Mom, and don't want to see her suffer. God Bless you, and I will be praying for your continued strength through this process.
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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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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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trunner0, you are right, every country has a plan which goes beyond a generation, and keeping people alive so much longer than is appropriate does give massive resource networks to the drug companies and medical staff. The trouble is that in doing so, it all but kills those who are on the front end of this, such as you and your Mum.
Giving B12 shots....oh my, where is that Dr's compassion, to keep her more awake?
I despair. This is why Dr's do not support euthanasia, it is something that a civilised society needs to come to terms with, rather than have these poor old people go through every kind of agony to spare Dr's consciences.
It needs a serious debate. Stuff the religious lot, it is down to an individual's rights
and desires. Unpleasant but the world is a crazy place where you would be fined
and imprisoned if it were a pet.
A living will in the UK can help on the resuscitation bit, but does not go fair enough,
I see this as a fundimental human right, do not tell me what to do, and I will not tell you what to do either.
Wouldn't it be great if you could simply be let go. We have witnessed 2 lots of
people go down to nothing, human skeletons who were family members, and this
is right???? I think not.
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This whole issue of people living longer and yet their quality of life is lousy...is a complex one. There are no easy answers.

trunner...it is not unusual what you are feeling. Secondly, based on personal experience with my mother, whom died of "complications associated with dementia", I won't repeat what others here have said. But, I would suggest that you are probably very tired and weary of your up & down, 2 year + battle caring for your mom. That weariness, both physical and mental, can affect your judgement.
I've seen where people, due to being worn-out and/or "wanting their life back", have hastily made decisions for their ill loved one that they later regretted. At the time they made the decisions, their head was in another place due to a long struggle. Keep that in mind before making any decisions pertaining to your mother's care, as well as things that effect you and your life.

Make sure you are giving yourself time away to de-stress and relax and clear the head on a regular basis, to keep you healthy physically, mentally and emotionally and at your best for your mom's sake.
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I have the same feelings about my mother in-law. My husband and his brother also feel this way. The problem with modern medicine is that they can keep you alive much longer but, that doesn't mean they necessarily should. It seems they put more emphasis on quantity and not quality. Nature isn't allowed to take it's course like it once was. All we can really do is try to remain strong and understanding. Remember, you're not alone. This is a very common scenario days.
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I know this is not a religious discussion and certainly, no judgement regarding whether or not anyone 'believes' or not. However, I do and I raised my children to worship and believe in God as well. Here is something that always enters a conversation when things get frustrating, pointless, wondering what the meaning of it all is, etc.
"What is God's plan in my life and how can I serve Him in my living?". We all need to feel useful and relevant. I too have struggled with depression after a divorce, losing a loved one, having something not work out with a project that I worked hard at or not receiving praise or recognition I thought should be deserved. One tends to get myopic at those times.
If we believe and know that we are not here for our personal gratification and that God has use for us as long as we are on this planet, then our mission becomes not about ourselves but about how we can do His will every day we are here. No matter what we are going through, others are watching us, interact with us, are influenced by us.
So often as a Christian in the past I have wondered how best to witness to others without putting anyone on the offensive. Yet we are taught that's what we are to do. Here is what I think - that by our ACTIONS and our BEHAVIOR people can be inspired, feel the strength to go on one more day, feel better about themselves. And by doing that, focusing on our daily mission to be of service, we quit thinking about our own negative issues. To me, having someone see that and asking me "how can you be happy when fill-in-the-blank is going on?". THAT is how we witness and how life can become filled with more will to get up day after day.
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When my 93 year old mother in law has a hard day and she feels bored and irrelevant, wondering why she is still around, I say to her "Well, I guess God isn't finished with you yet".
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It makes you human. There are no "super-saints", just saints. Cut yourself a lot of slack because I'm not sure many people really understand what we go through and never will unless they go through it themselves.

Dementia sucks! That's all there is to it, and I will personally take terminal cancer over Dementia any day!
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Unless a cure is found for Alzheimer's, what is the use of wanting to live to 100 as so many people are striving for? My parents both took really good care of themselves and were so proud of that until my mom was diagnosed with AD. Their world just exploded right before their eyes. My husband read an article a couple of days ago about the fact that by 2045, one could expect to live to be 100 very easily. For what all of us have seen; why in God's name would anyone want that?
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Have you had your parent assessed to see if she might be available for hospice care? Alzheimers/Dementia alone doesn't necessarily qualify someone UNLESS they are in the end stages of the disease and/or have other co-existing health conditions. It might be worth having someone from a hospice program come out and assess her. This way you could get some help with bathing, grooming, comfort care, etc.. If a hospice pt is on Medicare, Medicare will cover up to 5 days of respite care so the caregiver can get a break every once in awhile.
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I believe in the quality of life and at this point I 'm not really seeing any for my dad. he watches movies, usually the same ones, and repeats everything every day. i have family come in once or twice a week and i've insisted on them taking my mom & dad for at least one weekend a month. and sometimes it happens. i never thought i'd be in this situation and I hate to say it but i hate living this way.
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First of all...I am so sorry you are having to go through this. I will never understand why our bodies and minds have to be so ravaged by disease before we pass on. The emotional toll it takes on the loved ones is sometimes more than you can bear. We, here, are all in similar situations. It is NOT wrong to want to see it end. You want it to end for your loved one, as well as yourself. It is so difficult to lead a "normal" life when you see someone you love going through this. Never feel guilty about these feelings. I have had them myself. When my dad passed away, after spending eight long years in a nursing home, I didn't cry. I cried when the man I once knew had "gone". I know so many of you understand this. Please take care of yourself as much as possible, and try to get your mind involved in something else for a while. I'm sending you love and hugs along with the hope that things will be better for all involved soon.
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I am in the same place as you. I feel that the end is not up to us but up to God. Granted I also feel that my mom would be better off as would we if she passed peacefully. We have no control over it. My husband passed suddenly at 59 and my mom at that time also asked "why didn't I go instead of him' .Therefore I try to take enjoyment from any happy moments I can find with her and realize the plan is not ours. Try to get some assistance in the caretaking and perhaps some counseling for yourself.
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I read with interest "is it wrong to want it to end". . . My situation is with my Mom, age 90 who has resided in an AL facility for almost five years, the care is excellent and she has always loved living there. Early in June she was hospitalized (11th time in 7 years) for re-occuring UTI (has a cath for 6 years); and bowel blockage, in the hospital of course they started her on yet another antibiotic, which she could not tolerate, she is extremely frail and about 60 pounds. She returned back to her AL, a day later I contacted a hospice agency, who are like angels from heaven. They are keeping her comfortable, she has no pain now, however that was nine weeks ago. It has been very hard watching the small steps, talking less, eating/drinking less, and sleeping more, now almost all the time. On a daily basis I am alone in this with Mom, my brother lives quite a distance away, we talk almost daily which helps, he knows what is going on and did visit in March for Mom's B-Day, and we have great memories of that time. I have been told that "God isn't done with her yet". . . and there are days that I'm thinking "what is God thinking". . . This past weekend she was very quite and not eating/drinking hardly at all. . .so yes, she's also had a great life and why can't it end quietly for her, so she can be at peace and be re-united with my Dad, the love of her life who left her seven years ago. Reading all of your stories does help, I realize that I'm not alone
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We're in a similar situation. My mother is 87 years old, has been on hospice for four months with congestive heart failure, but up until a few weeks ago was her usual argumentative, controlling self. Then, without warning, she seemed to have difficulty swallowing and stopped eating. The hospice was ready to send out a 24-hour crisis team, but I held them off and my mother briefly rallied. Now she's stopped eating again and has become increasingly weak with a corresponding decline in awareness. Her breathing is very irregular, even with oxygen, and she seems to have trouble forming words or thoughts. She's never had any dementia, just seems as though she's struggling for consciousness even when she's awake.

Like Lastowski, I'm in this alone with her physically, although I also speak almost daily with my brother who lives about 600 miles away. My sister lives closer, but she seems to have trouble coming to terms with the situation and makes excuses not to visit. On one hand, I want to tell them my fears that my mother won't be with us much longer, but on the other hand I suspect it's more for my own comfort than anything else. There's nothing anyone can do — she's reaching the end of her lifespan and her heart is simply giving out. Today I notified my brother that the end might be near, but now I'm wondering if I did the right thing. There's nothing he can do except fly out and wait for her to die. I don't think I'm being heartless, but what's going on seems so natural although sad and drawn out. My hope is that at some point she'll pass away quietly in her sleep, and I'm so grateful that she doesn't seem to be in pain. If she were, I'd certainly want it all to end as soon as possible. As it is, it feels like I'm just waiting, waiting, waiting for an inevitable conclusion. And feel guilty for wanting it to be over before it might get worse.
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This is a sad posting and I understand it but cannot imagine Mom not being here. Sometimes I think of "life afterwards" and wonder if I will make it. The B12 shots are for confusion and memory problems, a huge cause of dementia so I agree with getting those if only to ease your moms mind a little. After my Mom had her B12 shots we were told to put her on 1000mcg's daily and I also take them daily hoping to prevent myself from getting this.
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Paula, I am so sorry for you and your family. I hope your mom goes peacefully. I am glad you have sibling support. That is huge for your mental and emotional stability at this point. Hugs.
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Thank you Noleslover for your thoughtful words. I am grateful to have the support of my siblings. They've had issues with my mother in the past—years have gone by without more than a very occasional phone call and no visits. Some of those issues are probably still there, but at least they've been put aside now.

Right now my mother is on her fourth day with no food, but still accepts water. She's stopped using words to communicate with me but relies on meaningful looks and gestures. I'm not certain whether she can still use words or not. My sister's supposed to come by this afternoon, but has suddenly developed a rash and has to see her doctor first. I'm holding her to the visit though because I want to see if my mother will speak to her and is only taking the easy way with me. My sister thinks I should call in the crisis team from hospice, but I'm putting that off as long as possible. My mother isn't uncomfortable or in pain, so I'd like to keep things peaceful for as long as possible.
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