Dying on My Own Terms – Giving Young Onset Alzheimer’s a Voice

I’ve held off for some time on posting this guest blog. I knew some would struggle with it and MomMe-300x300others would be offended by the topic of euthanasia being presented in the context of Alzheimer’s. Perhaps, even more so it was my own struggle with what appeared hopeless about Michael Ellenbogen’s story.

I now see Michael’s story as more than a plea to die on his own terms. It took watching my mother advance from the mid-stages to the late-stages of Alzheimer’s. Suffering two broken hips (five weeks apart) has landed her in a rehabilitation/skilled nursing center two months, and counting.

parents-wedding-300x300After 61 years of marriage, my father is now a recognizable “visitor” she thankfully still calls by name and to whom she returns the words “I love you.”  I watch as he is visibly torn and brokenhearted by this new script for their lives. Her potential for progress and return to their apartment are unknowns.

Prior to the 2nd hip surgery, my mother told me she wanted to die. It wasn’t the first time. Yet, it took me awhile to understand the depth of her words. You see, I had to get past my own selfishness … something my father, understandably, continues to struggle against. The thirst for more time with our loved ones is the hardest part of grieving, and ultimately letting go.

In seeing mom, I frequently think of the scripture “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven.” That verse has new meaning for me; my mother is changed and she has become like a little child.  In fact, she is now much more like my child than my mother.

My mother is unable to gauge her own safety; she’s unable to remember she can’t walk to theMom-with-Ball cropped bathroom (or even that she just went to the bathroom); she is unable to be involved in any aspect of her personal or medical care; she is unable to get up and move around at will; she is unable to feed herself for the most part or swallow solid foods without choking; her list of inabilities is far longer than her list of abilities. Her life has seemingly lost every semblance of quality. Still, I strive to give it to her: Sunday car rides, classic songs, chocolate mint ice cream, sitting beneath the stars or soaking up a little sun, tossing a ball, reading her poetry collection aloud ….

Yet, I prayed that hard prayer during her 2nd hip surgery. A prayer that some wouldn’t understand. I was ready to stop being selfish; I was ready for God to take my mother “home” where quality is endless.  She didn’t go though.  She now often tells me that “Nana and Grandpop are coming.” Are my grandparents really communicating that her time is near, or is my mother wishfully thinking of the end to her diminished life. I don’t really know, but I  do understand Michael Ellenbogen better than I did when he joined us on the radio with Richard Taylor some months back; better than when he initially sent me this blog post.

This is Michael Ellenbogen’s story of living with Young Adult Onset of Alzheimer’s.

michael ellenbogenImagine if you will, waking up one morning and going about your daily business. You have had breakfast and are about to leave for work, but you can’t remember where you left your keys. Common enough you say; we have all done that at some time or other. Your wife hands you the keys and off you go. Life carries on as normal for a few weeks then one day, while at work you have to call a colleague, but you have inexplicably forgotten his extension number; an extension number you have called numerous times a day for the past 10 years. You feel silly but put it down to being tired. You work hard and hold a high profile position in a financial institution, so it is understandable that you will have memory lapses now and again. Like the key incident, you laugh it off.

Over the next few months things start to get worse, you are forgetting people’s names even though you have worked with them for many years, you are making stupid mistakes at work, you are forgetting to go to meetings, you are finding it really difficult to do the simplest of tasks, you continually forget where you parked the car.  Again, you are told by friends and colleagues and doctors that it boils down to stress; that you need to slow down, maybe take time off, etc. But you know there is something wrong. You know that it is more than stress.

So you start keeping a record as best you can and you pester your doctor for answers. One day you get the answer. An answer no one expected.

An answer that will change yours and your family’s life forever.

You have Young Onset Alzheimer’s Disease.

Alzheimer’s is an incurable, progressive loss of brain cells. In the beginning it targets the memory and speech, as time goes on the symptoms become wider ranging and debilitating and include disorientation, difficulty judging distances, poor vision, poor speech/writing abilities, repetitive behavior, mood swings, and depression. Then in the final stages of the disease it is not just the mind that is affected; the body is rapidly declining also. In the late stages of Alzheimer’s there will be difficulty swallowing, a needed for assistance when changing position or moving from place to place, there is increased vulnerability to infection and a complete loss of short-term and long-term memory. Death is slow, painful, undignified, and inevitable.

My name is Michael Ellenbogen and this is my diagnosis.

For the last decade I have campaigned on behalf of myself and all those suffering from this devastating disease. Why do I have to campaign? I do it because over five million Americans have Alzheimer’s, and other forms of dementia. And what is more shocking is the lack of knowledge out there about this illness.

I have become extremely surprised by the lack of public commitment to my pleas for support of Alzheimer’s disease. While some may be sympathetic in the moment, there appears to be little follow-through.

People look at me and think there is nothing wrong; I am not in a wheelchair, I have full use of all my limbs, I can see, hear, speak and listen…… but not for much longer.

I am dying; day by day, hour by hour, my life is ending.

So much of my life has changed with this disease; household chores that were once second-nature, like cutting the grass have become frustratingly difficult for me to perform. I leave things lying around the house; not to be difficult, but because I have forgotten where they go.  I am also afraid that if they do get put away then I will not remember where they were put.

I was once a very sociable person but now I go to a happy affair only to be tortured by the noise and surrounding conversations. I am overwhelmed by the stimulus of sight and sound. I don’t understand what people are saying; the words run together and they may as well be speaking a foreign language.

I can no longer write or speak like I used to; what you a reading now has been written by a friend of mine who helps me put my words onto paper. My friends have become distant and even when in their presence they will address my wife, even when inquiring after me they rarely direct their questions to me. This is heart-breaking for me — the fact that they feel they can no longer talk to me really saddens me.

Grocery shopping with my wife is time-consuming and frustrating, as I find it difficult to make decisions and plan ahead for meals. Eating out was something I used to enjoy; but now I am unable to read the menu and assimilate the information into a decision. At home my wife has to assemble my meals in a series of individual decisions.

There was a time when I could follow a map and easily get from point A to B. Now I rely on my wife for navigation. I know that it won’t be long before I can no longer drive and that really upsets me because I love going out for long drives in my car. It is the last vestige of independence I have.

I used to be smart, I worked hard, and I accomplished a lot. Seeing all my failures today are giving me a new appreciation for the things I was once capable of doing. I was a very different person, but that intelligence still shines through occasionally as I am challenged to invent new coping strategies to respond to these changes.

This disease is costing me money in so many ways because of the problems and issues I create; I have broken gardening tools because I have forgotten how to use them properly.

Personal grooming is a problem as well; as I can never remember the last time I washed my hair or changed my clothes.

In meetings I will lose track of the subject matter when information is shared in long sentences. If I am speaking at events or meetings I must have my speech printed in a large font size, with clearly marked punctuation.

Sometimes my mind does not communicate with the rest of my body; I had to turn the grate on my fireplace but instead of tentatively feeling if it was hot or not —  I just picked it up and badly burned my hand.

I can no longer use my video recorder. I had trouble remembering which way to turn off the water in the garage for the hose.

I lost my job because I could no longer function in the environment. So, now I spend my days advocating for Alzheimer’s. It gives me a reason to get out of bed in the morning. It stimulates what is left of my mind.

Do you know what the worst part of this is? I have to watch my wife struggling to do the things that I once was capable of doing, and know I cannot do anything thing to help. I see my wife becoming stressed, depressed and overwhelmed, and know it will only continue to get worse.

My wife is on the road to hell; I have not even reached the worst stage. That scares the hell out of me.

I am losing my mind and I can see it happening, but I cannot do anything to change the course.

I am slowly becoming a child again, and will soon be a body with no mind.

At what point should I give up? At what point would you give up?

What do I have to look forward to?

Why should I put my wife through any more pain and sadness?  Do I really want her to watch me slowly die in front her eyes?

Any chance I had at a good life and a happy retirement has gone; my life is pretty much over. If you were in my shoes would you want to carry on, knowing what is in store for you?


I want to die on my own terms; I want to die with dignity; I want to die while I can still make the decision to die, and that is a very small window because I know in the not too distant future even that choice is going to be taken from me.

The laws we have in place today do not take into account the needs of people suffering from dementia; we need to rethink not only how we regard people with this disease, but also how we look after them. We need to have things in place not only to help those suffering with vital and productive lives, but also provide the means necessary for them to die with dignity and at a time of their choosing. We need to take our heads out of the sand; we can no longer turn a blind eye. This is a very real problem. This is happening now to millions of people across America.

We need your help!
Written by Michel Ellenbogen and edited by Emma Steel

Click here to view his book and get in touch with Michael Ellenbogen 

Are you diagnosed with Alzheimer’s disease or loving someone through it … What’s your opinion on “dying on your own terms?” 


2 thoughts on “Dying on My Own Terms – Giving Young Onset Alzheimer’s a Voice”

  1. is there statistical information on people with ALZ dying in prolonged agony vs dying in sleep? Is Hospice insufficient? I am wondering if the fear of being a burden, helpless, or suffering without help is truly the normal end of life for people with the illness.
    Is the common fear of being an unwanted intolerable burden to loved ones different for ALZ than a person with terminal MS? ALS? Parkinson’s? Cancer?
    My grandmother had it (and my Dad and now me), but at the time it was just part of life. It did not have the catastrophic aspect it seems to have now. She died at home, in bed after becoming unable to eat or swallow. My Dad had an infection and food and water were withheld with some Hospice support. Fear of some horrific end for me is something I do not accept yet as it feels like I would be living today in a horror that has yet (if ever) to happen.
    In all likelihood I will die of heart disease before ALZ. Thank you for the heart and soul you have put into getting respect for YOAD.

    1. Dear Margery, Thanks for your thought-provoking reply on this Young Onset Alzheimer’s Disease (YOAD) post. I will invite Michael to respond if possible. I don’t know of specific research. It would beg a question though: how could we actually measure prolonged agony? According to the National Institute on Aging, late-stage AD is characterized by the inability to communicate by speech or recognize family members, the inability to move about without assistance, incontinence, loss of appetite, and loss of the ability to swallow (all of which I am witnessing with my mother) … death usually resulting from aspiration pneumonia, infection, or coronary arrest. It seems then, that dying in one’s sleep could be a blessing. Family members need to be informed, with great compassion, sensitivity, and patience, about the dying process and how natural and inevitable it truly is. Equally important, nursing homes and long-term care facilities need to be better educated (and practiced) in what constitutes dignity of care, at every stage of the disease. I imagine one’s loss of dignity is more feared than being a helpless burden. I have heard cancer patients express not wanting to be a burden too. I would venture to say it is common for anyone experiencing uncontrollable aspects of terminal disease. There has been an interesting shift with my mother since being reunited with my father (after two years apart due to their differing care needs). They live together again now, in an 8-bed assisted living home with wonderful personalized care. My mom is calm, peaceful, and interactive again, though she can do nothing for herself. Her response to this environment (and reunion with her spouse of 63 years) seems to tell a story in and of itself: one’s sense of dignity is reflected in how they are embraced, as a whole person. What has been lost is accepted as “just part of life”, as you eloquently noted. Margery, I thank God, you are choosing to living courageously instead of fearfully.

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