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What eventually kills an Alzheimer's patient?

47 answers | Last updated: Sep 27, 2014
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An anonymous caregiver asked...
What eventually kills an Alzheimer's patient?
 

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A
Ladislav Volicer, M.D., Ph.D., is recognized as an international expert on advanced dementia care. He is a courtesy full professor at the School of...
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Most common cause of death in individuals with advanced Alzheimer's disease is an intercurrent infection, mostly pneumonia. An intercurrent infection is almost inevitable consequence of advanced dementia because of impairment of immune function, inability to ambulate, incontinence, and aspiration. Even when one infection is cured, it very often comes back and eventually may not respond to antibiotic treatment. Since diagnosis of an infection and treatment with antibiotics may have adverse effects on patients comfort, a hospice/palliative care approach to management of infections in advanced dementia may be better than aggressive treatment.

 

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lmartin answered...

My aunt died of malnutrition. She wouldn't eat and we had to feed her and then finally her body didn't know how to eat or swallow. By then she was just skin and bones. By then she was no longer able to talk, and of course she hadn't know anyone for a long time. She had also broken both hips and had both replaced. It was very sad.

My dad was so angry, aggitated and confused that he would pace constantly. He fell in July then again in Aug. they could not stop the bleeding in his brain the second time and he died. He didn't know any of us except my mother. He didn't know where he was or what time period he was in. He was probably in the middle of the end stage.

In the long run I am glad that my dad did not linger like my aunt did. It was so sad to watch her shrink away. Not only did she lose who she was in her mind but in her body too. After watching them die of this horrible diesease I hope that we can find a cure or a way to make life for Alzheimers sufferes easier.

 

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frena answered...

in my experience as a caregiver, most people with dementia tend to die of the normal things of old age -- heart failure, kidney failure, cancer, infections -- rather than specifically of losses due to dementia. either way, as a family caregiver, just cross the bridge when you come to it. i know sometimes people make frightening pictures of what they imagine an alzheimer's death to be and really in general most old people don't die badly. people who are very agitated at the end are usually dealing with inner emotional issues that aren't much to do with their disease, but unresolved life issues. i hope everyone knows that, even if someone is in a care institution, the family can call in hospice. that will always bring much more peace and ease to the person, and also to the family since they support the whole family.

 

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joseph.potocny answered...

I suffer from AD and FTD. What really kills us? Well if we should happen to live healthy, no uncurrable diseases and have good care, we die when our BRAIN finally has forgotten what it is supposed to do. Forgets to tell the organs what to do, like Hey Lungs, Breathe, you heart pump, Mr. Liver you have to filter and oh mr. & mrs kidney clean up the waste. In simple raw terms, we kill ourselves, because our brain forgets to tell us how to stay alive. That is what Dementia Does, It's Job. Then we are set free from the ravages of the disease.

I love the term "EXPERT", the community here told me it was a subjective term. Well Charlie Chan in a movie expressed it as it really is, "AN EXPERT IS A PERSON WHO MAKES SNAP Desission AND IS SOMETIMES RIGHT". As you can see I see things in a much different light living the disease.

http://living-with-alzhiemers.blogspot.com/

 

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lmartin answered...

I agree w/you Joseph. That is what happened to my aunt. Her brain could no longer tell her body what to do and how to live. I think the "experts" need to pay more attention to what is happening in real life and not in theory.

 

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Redbeard answered...

As others have stated, it seems the brain no longer tells the body how to live ... various factors can contribute to death. My father was weak, could barely speak out loud, ate less, etc, near the end. One day I got a call that he was likley in his final hours. I came and sat with him during his last two hours. He was lying still in bed, breathing heavily, and was unaware of his surroundings or me. He finally took a couple of deep breaths and passed relatively peacefully.

His death certificate states Alzheimers as the cause of death. I think that is true in general, but it was a general deterioration of bodily functions brought on by Alzheimers.

 

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joseph.potocny answered...

Redbeard,

Sorry your father lived in this World i live in, but in the end he won, AD gave it it's best but he is the one that is free now. There is truth in what you say, but it is still our own brain that falters period, if it did not the organs would still know what to do. This disease knows no niceties at all. May you find peace in your dad's freedom. If you want, on my blog, I post pictures in memorium of those before me. I would be honored if you sent me a picture of your dad, his first name, year of birth and year of freedom. jolynn1@cox.net God Bless, joe http://living-with-alzhiemers.blogspot.com/

 

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bware answered...

Pt kills himself is a very poor statement to make. Pts w/dementia especially in later stages have no control and in many instance no ideas of what is going on around them, they do not kill themselves its the diseases that robs them of their ability to live fully or normally.

Sorry I totally disagree!

 

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frena answered...

all human beings die. all. no matter how rich, how thin, how careful, how healthy, how determined not to die, how ill, how demented, how any darn thing -- we all die. that is an intrinsic part of all human life for all human beings. it's normal, not "failure" or "killing ourselves".

 

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Guy268b answered...

My dad had Alzheimers for about 10 years and died 1976. Very little was known back then about treatment or we didn't have access to any info. My dad got to the stage where he could not eat and he had a feeding tube.By that time he was totaly a bed patient My mother had been a nurses aid for several years and without her knowledge of care he would have starved to death. We got little help from the doctors or the hospital staff partly they did not know what to do and some didn't care. He had pneumonia and had to be hospitalized several times. My mother had to care for him even in the hospital with some help from staff. Even with the feeding tube he soon was reduced to skin and bones with bed sores. I think from his facial reactions he knew so much but could not communicate. When he had to be moved you could see the pain on his face. You could could ask him to squeeze your hand and he would weakly do it after several seconds. He had to be put in the nursing home after family could not care for him at home. The family did what we could for him there but he died of pneumonia and lack of medical care in the nuring home.I think pneumonia is the main cause of death in AD patients and older bed ridden patients. We cannot ever tell what the brain is doing even when the body does not react. I think my dad knew what was going on around him untill the end. Every victim of AD is different. I am so glad or the advances that have been made in this field since the 1970's yet it is one of the most heart breaking things to have happen to any person and their loved ones.

 

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An anonymous caregiver answered...

I pray some how we can find why so many people have this disease,& what causes it. I think it is so much more prevelant these days or maybe we hear about it more.It is a very sad sad illness & makes one feel so helpless in really helping our loved ones,I wish I could do more but I live away from my lovedone & can only call & have a limited conversation.She doesn't alway's seem to be understanding so make the conversations short. Will see her in two weeks,but she is back in ahospital her husband can't keep her in the house & is trying to get meds to help her restlessness.I get so anger & sad that I can't do more.I guess we just all need to pray for a cure. I read the body just shut's down because the brain doesn't tell it what to do anymore.Very sad.

 

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An anonymous caregiver answered...

I took care of my aunt starting when her husband died. She had no children and lived alone. She spent holidays, birthdays, special occasions with me and my family. She moved a few times, with my help, and I was made her Durable power of attorney.She was always so unsettled and lost her ability to do most things....laundry,preparing meals,personal things. She lived in an assisted living place....beautiful, in a small apartment. Every move she made, she lost more of her memory. She always knew who I was, and was glad to see me. Toward the end, she quit eating and lost a terrible amount of weight. The staff tried so hard to tempt her with things she might like. The day she died I stayed with her for a few hours, just having a feeling something was amiss. Finally went home to get some rest and was called in the wee hours of the morning, she was gone. She took some of the meds, and was not helped a bit. Was hospitalized several times late in her battle. I'm so sorry for her having had to have fought this terrible disease. I only wish I could have been there to hold her hand when she left this life. I hurt for everyone who is the care giver...its the hardest thing I ever did, but I did my very best to make her feel cared for. God Bless the caregivers.......

 

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Cindy answered...

My mother is in the final stages of Altzheimers. She can bearly feed herself with her shaky hands. She cannot walk, hear, understand and does not recognize anyone. Her life ended more than a year ago. She is angry all the time and fights anyone who tries to care for her unless they medicate her to the point she can hardly keep her eyes open. I wish Dr. Kavorkian was still here to end this horrible tragidy.

 

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Cindy answered...

You must put her in a memory care facility. They are trained in how to take care of people with dementia. Whether she has altzheimers or is faking it, you have a responsibility to yourself. She will not like your decision and will continue to complain about almost everything. When my mother gets like that, I ask for a smile. I tell her she deserves to be happy and smiling always helps. My heart goes out to you. Remember, you deserve to be happy too.

 

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Stu answered...

Dementia care has improved so much! Consider a secured care unit with staff that is trained to care for dementia patients. My mother is thriving in the facility she is living in now. I belong to a support group there and the staff helps me to understand what is happening to Mom. It is very sad to watch the daily decline. I read a book from the Alzheimer's library about advanced dementia and hospice care... it was depressing but helped me to understand the last stages. My issues are with the family members who have abandoned Mom and I but cast judgement on the fact that I "put her away". I am there daily and I know my continued support is very special to both her and me.

 

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frena answered...

it's very sad that staff are often out of touch with the inner journeying of people with dementia, Stu, because that is where the positive is. most people with dementia are spending a lot of their time revisiting their past. brain studies show they day-dream a lot, and overnight studies show they dream much more than most people. so there's stuff happening in the brain which indicates much thought activity on their part. they experience actually living in the past with parents and those they knew when young (and they talk to us a lot about these things, but often we don't listen because we really want ourselves to be heard and be known). listen to what your Mom says and you may find she spends that time elsewhere. this is where the journey of the soul takes place, Stu -- in the sense of bringing everything to peace before dying. so don't be sad because you think she's lost and useless. it's not so. people with dementia are deeply involved in examination and reconciliation and, if we choose, we can let them show us where they are and walk beside them as they journey. i do encourage you to listen and figure out whether any of this is also her journey. good journeying.

 

NoScreenNameYet answered...

What Frena wrote struck a bell. Once I told my mother that she was tiptoeing out of life, turning the lights on one by one as she was leaving. She alternates between vascular dementia symptoms and moderate AD symptoms. She refuses to eat and drink, but these issues come from her childhood, so I guess she is coming to terms with that period of her life. She was placed in a convent at age 3 (probably because she was a difficult child). I hope that in this journey, she will come to terms with this period of her life and choose to journey into a period that was happier for her. In reply to the initial question, I think life finally kills us all.

 

SadDaughter answered...

My father died at 64 from AD. He had a stroke, followed by a heart attack. This was just 3 months ago. It was sudden and unexpected. However, he was in a nursing home, alone and it was terrible. We all had expected him to go home to recover from the stroke.

I guess, on the other side of the coin, he was spared.

 

Stu answered...

Dear Sad daughter... I know it was hard to loose your Dad... but he is at rest now! I struggle with my jealousy of friends like you who have seen the release of their loved one. My Mom has been struggling for about 10 years. It has put a strain on her, my family, and me. I desparately want to move on. I am tired of daily visits, the hospital, doctors,.... and all we have to look forward to is more decline. I miss my Mom so much. This not my Mom I visit and care for every day. It is only her body. I am in counseling and a support group so I am dealing but I am also ready!

 

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An anonymous caregiver answered...

I know this will probably cause controversy but this is a good argument for assisted dying. I hope things change when I get to this point. I would not like to live like this when there is no quality of life left. Just let me go with dignity.

 

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frena answered...

hmm, you know, i've never thought of people who are dying as not having dignity. neither do i think of people with dementia as not having dignity. that's a judgment made by others and a pretty questionable one too. most of the people who want to choose assisted suicide are people who have not made peace with the whole issue of dying, that universal thing we all do. by the way, "assisted suicide" of a person with dementia, who is not only not legally competent to choose but also may be just fine living with dementia in their own experience of it, would actually be murder. very dodgy territory here when we start deciding that ill people need a bit of pushing off into the great beyond.

 

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An anonymous caregiver answered...

Frena, If a person chooses assisted suicide over living with no quality of life usually that is their decision not the ones around and it is usually made before they get to the point where they cannot decide for themselves. Until you walk in their shoes, you cannot really comprehend just how painful it is to live like that even though it seems like they are actually not aware of their suroundings. I think you misunderstood just what I was trying to convey.

 

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joseph.potocny answered...

Howdy this is Joe. You know people got up in arms when I appeared in the HBO The Alzheimer's Project, Memory The Loss Tapes, when I said I would take my life before, someone had to pick my face up out of my dinner plate and clean it off. That was shown world wide and my blog got a lot of crap about it, but that is ok. See I made the decission at the age of 50 when I was bringing 3 Jewish nursing homes into the computer age, and watched people which I am one of now. Walking in total darkness, not knowing anyone or anyghing. I do not believe that anyone out theree that does not suffer from Alzheimers has any any any knowing of what it is like in Our World of increasing darkness, terror, frustration, forgetting who you are at times. Good Thing I have a wife to help me with these answers, she has grown to understand joeneese my language now. I am glad this topic is here. As caregivers you have a big job dealing with us. We have an even bigger one dealing wih who we are and who the hell you are telling us what to do. Right or Wrong, I want to die with some dignity left, that means some knowing of who and what I am, not a Walking Dead person.

God Bless & Keep You Joe http://living-with-alzhiemers.blogspot.com/

 

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Stu answered...

As I watch my mother's incontinence and soiling herself... not knowing she has to go and then being frustrated and embarrassed when she has a accident, I needed help and understanding. Many times she just doesn't care. She no longer takes care of any personal hygiene. Does not brush her teeth, comb her hair, ... without prompts from me or an aide. She is confused and angry frequently. She will get agitated because " I have to get home to Momma... " She will hit me and say nasty things to me one minute and then will apologize and say she loves me and wishes she was not putting me through this. She will cry out of depression and confusion. I am not saying assisted suicide is the answer. i am just exhausted and tired as so many in the family have abandoned her and I am the primary one to be there for her every day. Ten years of this has been a very long time. Unless you live with this every day, it is easy to find fault in the caregivers and question our decisions. Society has very little compassion for people with dementia. Weh people have heart disease, cancer,... friends and family offer support and assistance. Most people look at me like i am nuts when I refer to dementia as a fatal disease.

 

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Cindy answered...

How about stating in your living will that if you have dememtia and not longer are in control of your bodily functions, that you would like to be injected with something to allow you to die?

 

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deel answered...

This all very helpful. And I must agree with some of you that I would prefer to dispense my family of the hardships -financial, emotional, physical of taking care of me when the quality of my life is no longer there! I think we have to continue talking and sharing. The light might brighten up one day that will direct us to a better road to enlightenment about this illness. ~deel

 

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LRHWVM answered...

I would agree with this. Joe's comment about knowing who one is/has been at the point of dying is much preferred, at least by me, to the losses that come with advanced AD.

Linda H

 

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lmartin answered...

I agree with Joe. After watching my Father and Aunt die of AD I will definatly want to die when I choose and not after AD takes away who I am. If I am ever diagnosed I will have to have that talk with my children. I do not want them to go through what my family has gone through trying to come to terms with Alzheimers and losing a parent many years before they die. The monitary expense as well as the emotionaly expense are way to high. The medical profession is just now catching up with alzheimer patient needs and still are far from getting it right. No thank you. I will choose when I die and how.

 

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An anonymous caregiver answered...

Ah, Cindy. If only it could be so. Oregon is the only state in which a person is permitted that dignified choice and even there, the patient must be able to swallow the pills the physician has prescribed. No health care personnel are permitted to actively end a life or even to assist and Jack Kevorkian served years in prison for trying to change that. By the time dementia has reached the point you describe, the opportunity for a choice of euthanasia has passed, even in Oregon. A living will drafted by the patient while still cognizant of his/her functions can prevent a feeding tube being placed or an IV inserted for hydration. Then when the patient is no longer able to eat or drink, death will end the nightmare of dementia.

 

deel answered...

I agree with Frena that the dignity issue is no longer the patient's but the uninvolved, ignorant people around and maybe some family members who make the judgement. I am also beginning to understand that my husband's initial issue about family and friends knowing his AD because of trying to maintain "his dignity" is now no longer an issue for him a couple of years after diagnosis. So, I am the one who make sure a certain line is in place; in other words I don't volunteer his ailment to anybody unless I think it's necessary. We all die with dignity; we the remaining live ones can make sure they all die with dignity! ALL, no judgment whatsoever.

 

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bentley1 answered...

People we are born to die. The minute we take our first breath we start the count down. It's how we live, treat ourselves and others that makes the world a good or bad place.

 

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frena answered...

so people with dementia when dying have no dignity? funny, i never noticed that. i never noticed they didn't feel care, or have feelings or responded to the love that caregivers give them. in over twenty years and still counting, i've never noticed that. but then, i've never thought of anyone with dementia as empty, gone away, vegetable like --that is mainly the language used by people too frightened to figure out how to really "be" with them, as opposed to standing back and judging. that doesn't seem wise -- i mean, if your Mom or Grandparent has dementia, it's so likely that you will -- oh sorry, i keep forgetting that is exactly what you think about. but if you got nearer, if you took the trouble to relate, if you were compassionate and observant, then you would see what i see -- a human being dealing with both illness and abandonment, often with amazing humbling courage. just saying, is all.

 

Cindy answered...

Yes, I guess you are right. It has always been difficult for me to have people do things for me. And to watch my mother so helpless, there just seems there should be a better way to die. My mother does respond to touch. She likes to have me rub hand cream on her hands. And she likes hard candy. But, she also says she wants to go home. She has always been very religious so maybe she does have some comfort sometime.

 

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lmartin answered...

Frena my aunt "left" us many years before she died. If she had known what was happening she would have been motified. She used to tell me, "Linda there are worse things then death" and everytime I looked at her wasting away I thought of that. I had and have deep compassion and love for my aunt even now but the person that she was was gone. I continued to take her out for rides even when she didn't know who I was. I visited for hours and made sure she tried to eat. At the end I was, I'll admit, afraid to touch her. Her skin was transparent and thin and I was afraid I would break something or tear her skin or cause brusing. Compassion can mean a lot of different thing.

 

firstbornwith2m2c4 answered...

For all the families that have dealt with this already, for the soon to be late stage patients and their families, for the caregivers, nurses and cna's, hospice and friends helping families in this journey - I pray for you all. We all deal differently with sickness and death. Only God can take away a life since it is He that gives life. We must trust in Him to give us only what we can handle. If it gets too difficult - talk with Hospice - they are God's Angels on Earth. Call your priest, minister, rabbi or best friend to help you when you fall. Remember the poem FootPrints - "it was when you saw only one set of footprints that it was I who carried you" I am Jesus who loves you.

God Bless!

 

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Stu answered...

I think that somehow this chat took on a different direction than i meant when I said I was tired and frustrated. I was not looking at assisted suicide. I only wish it would not drag on so long. As others have stated... this body that looks like my mother is no longer the mother I know. I visit her every day and will be with her to the end but the Mom I have and will always have fond memories of has left us a long time ago. Tonight I received a phone call that Mom was being aggressive and uncooperative. I went over to try and calm her down. She has no problem solving or reasoning skills left. That is what is so frustrating and exhausting. I do not think people who have not lived in the situation will ever understand.

 

Cindy answered...

I so agree with you Stu. On my last visit to see my mother, they were giving her a shower. She was crying and saying that they were trying to kill her. She is suffering and has been for a long time. She probably forgets about it soon after but I know she still has feelings like fear, abandonment, pain, a lot of pain. Anger. She knows when she feels warm and most often when she feels cold She knows hunger and when she has had enough food. It seems to me a crule thing to put someone through that. But, I, too, don't know what the answer is.

 

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SSJones answered...

My father died 8 months ago. My family did not find out he died as a result of sepsis and prostate cancer. We knew that he had dementia and CHF. He stopped eating Saturday, Friday 12th. On Sunday the nursing home called us to let us know that he had started the dying process. We did not fully understand what that meant. You can read all these details but when it becomes a reality things become murky. He died Tuesday, February 16th and I wish I was with him in his last minutes on earth but I knew that he would not have wanted us to be there. He was a former nurse. As I look back on the last 2 years of his dementia diagnosis, I wish that I could take back the days that I was angry with him, did not visit him and did not tell him all the time of what he meant to me. Caring for him has help me to see that I am human. I am learning that my feeling are valid and it is what I do about them that is important. I am grateful for the friends that I have who listened to me without judgment. Caring for someone with dementia is not easy. You get frustrated at the person and the medical staff. Be honest with your relative about how you feel, tell them how much they mean to you and forgive them. Let them leave this earth with your love and forgiveness. I choose to remember the good things that I did for my dad. He knew my mom and sisters loved him and forgave him.

 

Cindy answered...

I just wanted to share with all of you something that my mother said recently. She said "I don't want to die". I asked her why. She replied "Because I'm too young". She will be 90 in December. The instinct to live must be very strong. She has been in memory care for more than 3 years.

 

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An anonymous caregiver answered...

Our Mother passed away just a few days ago. She was in a nursing home for almost 3 years. After she was there for about 6 months several of us had gotten together for one of the sisters' birthday, actually had a little "party" there for Mother to join. Anyway, as several of us were sitting there, she asked us to "kill her". Only a couple of us heard it, but it was so distinct and she made eye contact like she really wanted us to understand what she was asking. We of course cried and told her we were sorry, but we couldn't do that. The instant peacefulness on her face after she passed was such a transformation from what she had looked like these last few months, it was a relief to know she no longer suffered.

 

Rocha answered...

I think that degenerative diseases such as Alzheimer's is a natural ailment of aging. An 85 year-old patient will survive even if Alzheimer's had a cure? I do not believe it.

 

Brano answered...

Hi, I may only be 19 but my life has changed drastically due to Dementia / Alzheimers. My loving grandmother, mother of 5 is currently battling with this illness. I never realized just how bad she was, when one day I went over to make her lunch, and she thought I was the maitinence man her to fix her air conditioner (which works fine btw), My mother is the only one out of 5 children is the only one who helps her. she spends a minimum of 6 hours daily at her apartment, and now seeing just how bad it is I have been doing all I can. I am basically asking for your prayers for my mother and for my grandmother. My grandmother as of recently has moved into my mothers home. But I get rather offended when when people on here would rather be put down then have to deal with this instance. Yes it gets hard, yes they forget who they are. but most of the time they don't know that they have an illness, my grandmother has no clue anything is wrong, and every time that I see her smile, I know that she is still enjoying her life to the most she can. My advice for anyone with a family member who is dealing with this, the best thing to do is make sure they are kept busy. We have a basket of clothes we leave by her chair, so that she can fold them. when shes done we get a new load(We just unfold the clothes and give them back), Have them do crafts, leave paper and crayons out for when they want something to do. If you keep them busy they tend be much happier

 

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shenos answered...

I so agree with Stu. My father, 75, is ailing with Lewy Bodies Dementia since 2006 when he showed early signs of it. Unfortunately I live in a different country away from my parents. My mom is his primary & only caregiver and I can see how frustrated she is living through this every day. Sometimes I can term her day as a living hell, though my father has not put her through it by choice. We saw a sharp cognitive decline when they visited me for a long vacation and returned to their homeland. Presently, he shows extreme aggression and anger towards my mom, beats her up at times alleging that she has stolen his belongings (like his watch), abuses her, swears at her, shouts & screams day and night, throws tantrums in eating his meals, wastes food, tears clothes and I can list down so many things here. He has been put on Seroquel (100 mg a day) along with Rivastigmine and AricepT. But the Seroquel does not ever knock him off to sleep as it is known to be. He wakes up frequently during the nights tampering around with the furniture and doors. He doesn't care whether anyone hears him or not, but screams in the middle of the night constantly abusing in his own filthy language.

My mother who is also suffering from heart ailment is put through this hell every single day. Its not that i wish that he dies for I am nobody to take away his life. But the quality of life he has now and the way it has affected my mom's life, I feel that's the limit. My mom doesn't want to put him in a care home right now as he is still fine with his bladders, except occasional bed wetting but not soiling yet.

But for the kind of care and love she thinks to give him , it puts me to shame thinking does she deserve to live through this everyday? Does she not deserve to live in a better way?

Of course I am not his care giver, but I can certainly relate to the pain and anguish she has withheld in herself, for a reason that she cannot let it come out before him.

I think I don't want my mom to suffer as I want her to healthy. I keep motivating her and encouraging her for what she has been doing so far. However I am sure it will be of a little help, as she would still live through this hell and this puts her morale down every minute.

He is my dad and I feel a sense of pity for the life he has got right now. As Stu said, I agree so. He is my dad just by face and body, but the man I knew as my dad, played with him, laughed, cried and danced with has left us long back. My mom just takes care of this earthly body of the man who is known as her husband. I don't wish that he dies, but what we can expect is just a quick decline that he passes away without much pain and anguish for himself and us. My mom deserves to move on and live for herself.

 

Windy Wan answered...

Frena, imagine you soiled yourself everyday, couldn't walk, couldn't talk, couldn't eat properly. You spend all day lying in the bed and staring at the ceiling. I wouldn't call that as living with dignity, I would prefer myself to pass on cos it'll be a relief to myself and the loved ones. It's always heartbreaking to see such scenes, I'm not sure if you have encountered any of this. I'll definitely choose to go if I've the chance to.

 

 
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