Is ending the life of my mom, after Alzheimer's has destroyed her mind, murder?

[ShyMan]

Hello Everyone,

Alzheimer's Disease is cruel, vicious and relentless! Alzheimer's took my mother prisoner three years ago and accelerated its destructive march a year ago, leaving my mom speechless, immobile and bedridden, promoting me to take time off from work and put my life on hold so I can care for her. She had to go on tube feeding 9 months ago, freaking my dad out, leaving me as the sole caregiver 24/7. I would have to make US$500,000 annually just to pay for around the clock skilled caregivers (she would need two person team to clean and change her diaper).

Starting last week, my mom's mental decline accelerated rapidly to the point where she can't recognize me or even engage with me. I'm afraid she will lose all of her cognition or "mind" in less than two or three weeks, after which she'll become a "vegetable". I don't think she will live to see her 80th birthday early next year.

My mom had a tortuous life raising several children on her own and helping to care for several grandchildren very selflessly, often to her own detriment. Sadly, everyone has found excuses to not help my mom, except me and one sibling.

My mom's HMO keeps pushing me to put her in a hospice program every time she gets hospitalized with a bladder infection (she's been getting bladder infections almost every two weeks, despite my tremendous efforts to clean her and keep her clean and dry). One of her doctors finally confirmed for me that hospice is where 95% of the patients end up dying; the hospice "team" basically give the patients fatal doses of medication like morphine.

I'm conflicted and burnt out. Intellectually, I think I'm being very selfish by giving the order to terminate my mom's life, which many of her doctors said she would died a more horrify death "naturally" in less than 6 months.

I don't want to kill the woman who gave birth to me and helped raise me to be a successful professional. In my profession, they'd call me a murderer!

I'm so torn and conflicted. My mom designed me as her power of attorney in her Trust and Advanced Health Directive. My old joy these days is to get on Merb and dream about my upcoming return to Montréal.

I'd appreciate any insights anyone is will to impart upon me. I write this while I'm staying with my mom in her hospital room; I always stay with her when she's hospitalized because she as they say is "non verbal".

 

[Passionné]

ShyMan,

I would say calling it murder to end this suffering compassionately would be extreme. In any case everyone has to live their choices. The way someone else sees it won't matter to you in the end. You are the one who has to live with how you feel about your mother's condition and the suffering of all concerned, not others.

 

[cloudsurf]

Your story was hard to read and must be a hundred times harder to write.
I feel for you and I`ve gone through a similar heart breaking experience with a close relative.
You have to do what feels right for you and whatever your Mom would have wanted.

 

[EagerBeaver]

I watched my paternal grandfather die with Alzheimer's and now my parents are at the same age as your mother. I definitely feel for you because it's not easy to watch one's parents grow old and lose mobility and other faculties. I very much worry that I will be in your situation or possibly worse in a few years, as I am all that my parents have as far as a caregiver. They also live in another state, so I have to travel to them.

It's an awful situation and difficult decision to have to make. I personally do not believe in artificially prolonging life when there is zero quality to the life. But it's your decision and good luck with it.

 

[talkinghead]

Like cloudsurf, I've been there as well. It is unspeakably painful. I at least had other family contributing to the decisions; being alone with this is a terrible burden. My own advice is to seek what's called "the heart of compassion." Trust yourself to alleviate her suffering as much as you can. And remember that she is not coming back from Alzheimer's, and that you are not to blame for her decline and inevitable loss.

I do want to point out that "hospice" is basically palliative care given over the end of a person's life; in the US, it basically means that no further steps will be made to treat the underlying diseases; only the pain is addressed. The laws are changing, but for the most part in the United States hospice teams offer medications to ease pain but not in fatal doses. I'm not sure that any state allows a fatal dose to be administered without the patient's consent-- and so the patient must be legally competent. (I think this is right.) But you indeed may be in a position to deny care (such as through a DNR). If you're unsure, you definitely should consult with the doctors and your lawyer about what legal role you have. I have all kinds of powers of attorney for my surviving parent, but still....

Good luck. It's a heavy trip under the best circumstances. Don't beat yourself up.

 

[ShyMan]

Thank you everyone for your insightful comments; they all make sense to me and help clarify my thinking.

I finally completed and signed a Do Not Recessitate "order" except to provide comfort, long term neutrition and passive medical treatments (e.g., treating bladder infections).

My mom is and was a very compassionate person. My goal is to help my mom leave this world in peace with as little suffering as possible; I must reciprocate my mom's compassion. If there is such a place as Heaven or a better place in the next world, I pray that my mom gets there because she was a great mom, kind and compassionate person and very selfless.

 

[talkinghead]

That's a beautiful post. I don't know you--and yet I have a strong sense that you're a loving and devoted son.

 

[ShyMan]

John Black, I take my hat off to you and salute you for all of your tireless devotions and tremdous love you had for your loved ones; you did more for your loves ones than everyone I know combined. May life be kind and generous to you.

Thank you Talking Head. I just hope I do right by my mom, who is blessed with great physical beauty and youthful skin -- she looks 15 years younger than she is and her legs could easy pass as those belonging to a lady in her early 20's.

I've never been married and have no children yet but hope to have my own family one day.

I'm hoping my mom's mental condition remains stable long enough for me to take some time in Montréal to decompress and think things through; I'm hoping to return to Montréal in several weeks for this purpose; I've already bought my plan tickets and hotel room through Expedia. My sister will come with her children to care for our mom when I'm in Montréal. Thank goodness for Montréal, otherwise I'd go insane.

 

[westwoody]

My own father lost his faculties at 89. He had been a scientist, extremely smart.
In a very short time he lost all memory of who he was, he didn't recognise anyone, and had no idea what was going on around him.
The person he was no longer existed, what was left was just a shell.
We decided to take him off all life support because he was gone already.
I had a near death situation my self three years ago. The first thing I thought was "Please God I do not want to be a burden on any of my loved ones." Weird eh? I did not think"oh no I hope I get better", instead I hoped I didn't end up like my dad.
Shyman, the person you know and love, they are already gone. And they would not want you stressing yourself over them.
Any decision you make will be painful. There is no clear choice. You have to let go for both you and them.

Sorry for your situation, it never gets easier but life goes on.

 

[Passionné]

I had a near death situation my self three years ago.

You go through youth feeling almost invincible then maybe one of those terrifying labels reaches very close to you or right into you. Even if you had started to feel the passing of time an mortality the reality of such a condition coming upon you makes you come to grips with the depth of choices you may have to make.

Sympathies for your situation ShyMan.

 

[ShyMan]

I hear you WW and P, and my rational side, which I honed through years of working in the financial and legal professions, is still clashing with my emotional side. I'm too closed to the situation. I need to get some distance but circumstances do not permit. Like most of you said, my mom is gone; what is left is her body. I need to let go and move on with my life. Nothing can undo the damages Alzheimer's has done, which went into overdrive after she suffered a stroke. I've hit an emotional wall. I so wish my mom falls asleep in peace forever but her heart is still very strong, presenting me with the decision to end her life after her mind is completedly gone, which is likely to happen in days or weeks. Her neurologist cannot tell me when that will happen. I hope the decision I make will only make me a stronger person.

As for me, if I were diagnosed with Alzheimer's with what I believe is 99% correct, I think I'll go find a quiet nice beach and blow my head off, obviating the need to burden anyone.

 

[westwoody]

Do not beat yourself up too much. You can think about it and rethink your choice forever. Don't. Don't feel guilty. This is part of living, everything begins and ends.

Your mother would want you to carry on and live a life that honours her. She struggled to prepare you for life, she did her best for you, now you have to do your best for her.

Good luck, you will do the right thing.

 

[ShyMan]

Your mother would want you to carry on and live a life that honours her. She struggled to prepare you for life, she did her best for you, now you have to do your best for her.

Good luck, you will do the right thing.

Thank you, West Woody. I'll keep your wise advice in mind.

Many of of my life altering decisions and actions, which didn't make complete sense at the time, often years later proved to produce the best possible results.

Best,
Shy Man

 

[Halloween Mike]

My grandfather died suddenly of a heart attack, one that couldn't had been avoided even if i would had been there with him that night. It was sudden and very hard on me first as the guy was like a father. But we know he didn't suffer, he died watching hockey in his chair, most certainly being aleep at that time.

On the other hand i saw my grandmother long process of declining. She spent months in the hospital at the end and at time she was so confuse, i had trouble recognizing her. We prepared ourselves that she was gonna die, and weirdly it made it easier for us. I mean, maybe i was a tiny bit closer to my grand father but i really loved my grand mother too enormous, i was basically raise by them mostly. Yet seeing in in this condition was hard and when she finally died, it was a deliverance for her. If she could, she would had end it sooner.

So basically don't feel guilty if you choose to put her in the hospice. At a point she is not even there anymore.... nothing else you can do. Its not like she would magically heal and its just a "time to pass"

 

[CaptRenault]

My mom's HMO keeps pushing me to put her in a hospice program every time she gets hospitalized with a bladder infection (she's been getting bladder infections almost every two weeks, despite my tremendous efforts ...

You should take advantage of that offer as soon as possible. Your mom has a terminal illness and she is suffering and so are you. Hospice is a wonderful organization that is dedicated to relieving the suffering of both terminally ill patients and those who care for them. Hospice only accepts patients that a doctor has certified as being terminally ill and who do not want to prolong their suffering. The best thing you could do for you mom, yourself and the rest of your family is to take advantage of the services of Hospice. At the very least you should talk to someone at Hospice and learn how they can help more than any other medical organization at this point.

 

[Sol Tee Nutz]

Quick story. My father in-law was a healthy Quebec logger, powerful man. His health dropped off fast, in his last 1.5 years he had no idea who anyone was and needed nurse assistance to get out of bed and feed himself, toilet whatever, it was very hard on the family to see him like that, nothing could be done, I think he was happy when he died. I have sat down with close friends and told them it they saw me in that state for more than a month to put me down somehow, I will tell my kids this later, they are still too young. Sad was to end a life.
Just my opinion.

 

[ShyMan]

Thank you again everyone for sharing your experiences and wisdom.

I again met with a hospital palliative RNP and Chaplin today. (I met with another team about a month ago when my mom still had some cognition. Her mind deteriorated quick in the last few days.). I agreed to try a hospice program at my mom's house when they discharge her from the hospital. But I want a neurologist to exam my mom before they discharge her and for the neurologist to conform what I suspect -- her mind is gone. I told her doctors that her vitals are deceptive "normal."

You guys have been very helpful in helping me better understand and appreciate my mom's condition and options and my predicament. I thank you all from the bottom of my heart. I believe I will know when the time comes for her body to leave us and I pray her body leaves us peacefully, painlessly and with the greatest possible dignity.

Alzheimer's disease is one of the cruelest and terminal disease. I sincerely hope the medical professionals, scientists and engineers work together colloboratively the world over to create medicines, diagnostic tools and caregiving best practices for people who suffer from Alzheimer's.

My deepest sincere thanks to everyone. Best regards and wishes,

Shy Man

 

[EagerBeaver]

Alzheimer's disease is one of the cruelest and terminal disease. I sincerely hope the medical professionals, scientists and engineers work together colloboratively the world over to create medicines, diagnostic tools and caregiving best practices for people who suffer from Alzheimer's.

I think Alzheimer's Disease affects its victims differently, in some cases causing a rapid deterioration like your mother, which is not uncommon from what I have heard, and in other cases having much stranger and more complicated symptoms.

My Grandfather died in Hospice when he was 89 and he had myriad health issues of which Alzheimers was just one. He had been weakened by a series of strokes, and also had cancer in addition to the Alzheimers. He died just 13 days shy of his 90th birthday. In the weeks prior to vis death, knowing the end was likely near, I visited him as much as was possible. He was quite lucid on some days and totally out of it on others. On the days he was not lucid, he did not seem to know where he was, and he mistook me for my father. My father and I are the same height and look alike, but of course my Dad is 26 years older than me. On the days where my Grandfather was confused about where he was, his mind was somehow able to piece together an elaborate, but entirely fantastical explanation, of where he was and why he was there. He would alternate speaking in this manner and uttering gibberish, on the days when he was not lucid.

On his more lucid days, however, his long term memory was intact and he could describe in painstaking detail events that happened over 70 years earlier. I developed a theory that long term memory in Alzheimers patients works best for the happiest times of their lives. In my Grandfather's case this seemed to be his time serving in the United States Navy, in the 1920s, as a man in his late teens and early 20s. Long before he got Alzheimers, Grandpa had told me many stories about his days in the Navy, and being in China, and other places. When I last saw him a few weeks before he died, he could still describe to me in great detail how the guns fired on the great US Battleship USS Oklahoma, which the Japanese targeted and sunk at Pearl Harbor, as it was the one of the United States' featured battleships. Grandpa had served on the USS Oklahoma and his battalion had won some kind of competition award for firing the guns on that ship, and he kept the photo of his battalion with their award for many years.............I can still see that picture in my head, but for him it was like it all happened yesterday, even though it was 70 plus years earlier when he talked about it for the last time.

 

[ShyMan]

I think Alzheimer's Disease affects its victims differently, in some cases causing a rapid deterioration like your mother, which is not uncommon from what I have heard, and in other cases having much stranger and more complicated symptoms.

You're absolutely right, EB. I saw this first hand at the nursing home my mom stayed at immediately after she was discharged from the hospital after suffering her stroke three years ago. I stayed with my mom and slept on the floor next to her bed, helped feed her, cleaned her after she used the bathroom and accompanied her to physical, occasional and speech therapies, after which she regained a substantial amount of physical mobility but she still could not feed herself or clean herself. The stroke accelerated her Alzheimer's, which her neurologists had diagnosed her with early stage only weeks before her stroke. While I was with my mom at the (large) nursing home 24/7 for the entire duration of her stay for rehabilitation (I went to a local gym to shower), I saw numerous Alzheimer's who were at different stages of Alzheimer's, some needed strong medication to remain "non-violent", others simply stared blankly and others spoke with me when they were lucid.

I understand Alzheimer's runs in the family. If I were ever diagnosed definitely as having AD and began suffering from it, I think I'd end my life after doing the top 10 things on my bucket list and go to a State that permits a medical professionals to assist with suicides and terminate my life. I don't want to burden anyone, since I don't believe I have earned the right to, as my mom did by going to Hell and back several times to raise me and my siblings and care for their children.