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Thoughts about my Diagnosis
Internal Administrator
Posted: Saturday, January 7, 2012 9:40 AM
Joined: 1/14/2015
Posts: 40463


Originally posted by: Mike Donohue

Thoughts About My Diagnosis

I was diagnosed with Alzheimer’s disease in 2006. This is the worst possible diagnosis I could get, short of suffering a crippling stroke like my Dad or losing my eyesight. As I pass from conscious connection with Alzheimer's I am told I will not know what is happening. The pain of it is suffered by those loved ones around me.

None of this spares me the pain I will visit on my wife: robbed of a partner in exchange for a ward and charged with the effort and the cost of caring for me. I am saddened for my children. I will not likely experience their progress in life, nor growth of my five grandchildren I now have and any more that may come. I will probably not be around or lucid if I am there for their weddings and births of my grandchildren.

Although initially devastated I quickly arrived at this way of thinking about my diagnosis of Early Alzheimer's. I believe that things happen for a reason and according to a plan. Whose plan? I don’t know.

My plan set in this lifetime it is not! Whether it is mine devised somewhere else, the plan of my higher power, or a plan having its source elsewhere, I have no idea. It is a plan followed by me in spite of me, taking me often into places and directions I would rather not be.

Much of where it has taken me has been painful. As I learned in suffering through Alcoholism years ago, learned before recovery and learned after recovery from it, I am the better person for having experienced where I have been. It all turned out as it ought. All of the events have tied together into a definite pattern.

I can see this now. I have realized it retrospectively. I see it now in the serenity of my senior years. This has been one of the best things about growing old. I no longer have challenges to meet. I have met them and my serenity is the result. The years as they have unfolded since my recovery from alcoholism have been good ones. In most ways good because of the experience in recovery it provided.

I.

I have also known I was not finished. I hoped I was finished but knew I was not. I wondered what was yet to happen. That has been my view in these recent years as I have been summing things up.

It was not complete. I have not done as much for my family, my fellow man, my world, as I would have. I have been troubled for some time that I was not doing as much as I should. Others were. I felt empty in my self in this regard.

When I thought about it I reasoned, if I really believed I was living a plan, if my attitude was willing, the right thing for me to do would come along. When it did I would act. Although I wondered whether or not I was shirking or just fooling myself thinking this, I was prevented by one circumstance or another from going right out and getting something else started. It was in trusting this plan I at least felt a little peace about what was lacking in performance.

When at peace I would think, I wonder what my next undertaking will be and when it will present itself. I honestly believed that and found serenity relying on it. I believed I would fulfill the rest of my life with something more that would be meaningful for me. I would find something with which I could leave at least a little mark having helped others.

II.

On June 30th, 2006, I learned what my next challenge is. It was in the Doctor’s office when it presented itself! I have Alzheimer’s disease! It was presented to me then and there! What I do about it will be my measure of my last days. I have five to eight good years to find that out they said, maybe ten or twenty years if I am lucky. I pray to my Higher Power that I have the strength, the fortitude, to make the best of this time. I further pray that I may leave a mark because of this.

I predicate my last task on this: “What do I do about my diagnosis?” The measure is simple: “Make the best of it!”

Challenged I am. Ready? I have been waiting. Now I begin. It is here I plot my end game.

My AA experience offers the formula. They told us “Let go! Turn it over! Live but one day at a time! Accept, accept, accept some more!” In these aphorisms I recovered from Alcoholism. With these aphorisms I learned to place every issue of my life on the table. Turn it over, it works I learned. I couldn’t quit alcohol; I tried and tried some more. I turned it over as they told me in AA. I turned it over to my higher power. It worked. Not only for me but everyone I saw who turned it over and let it work.

It worked time and again in my life after that. And yes, there were times of extreme pain that my only remedy was that: turn it over. I put it on the table; I said “Help!” It worked, every time it worked!

So, I need a map?

I have turned my Alzheimer’s over to my higher power. I can’t handle this. It is the worst possible thing that could have happened. What happened to my blessed senior years? Why?

III.

I’m left with more to do. Maybe I will even leave a mark by reason of it. I will be remembered having done something of real value by living. I hope so and I hope I am equal to this challenge.

Positioning it in this way starts giving strength. Better yet, that strength is accompanied with a sense of peace.

I first sensed peace when I finally understood why I couldn’t keep up.

For many years before diagnosis I knew something was messed up, things were awry. It took me longer, always, with everything. I missed so much, more than I ever did; too often this was happening.

I couldn’t keep up in simple conversation. Things would not come up quick enough to hold my place in a group. I had to think over what was told me to understand. I was a lawyer and everything I did was harder. Forty three years, in the Courtroom much of the time and the basics were getting past me.

When I learned why, some sense to this became apparent. I wasn’t keeping up because of illness. There is nothing I can do about it, nor can anyone else. That is the way I am now! It was kind of like, there is nothing wrong, that’s why I can’t keep up; there is everything wrong but it is ok I can’t keep up. I must deal with me as I am not as I would have me be.

With this realization there is both relief and release. I am what I am. Now I must determine what I can do with what I am. I need no longer beat my brains over a lost cause, I will fashion a life within the new definition.

When I joined Alzheimer’s Org I told them although my background as a trial lawyer equipped me I was burned out by it. I did not want to speak publicly or advocate because in the later years pre-diagnosis I found it so nerve wracking. There was a time it was not; it had become that.

After about a year I did a public panel for a Jewish Family Group presentation. It went marvelously, I loved it, was good, and I was not in the least nervous before, during or after. I volunteered for another presentation with our local Alz.Org. This was smashing. Another AD friend and I comprised a panel monitored by a wonderful Alz.Org rep Michelle Barclay at a health providers’ seminar.

After this second experience I knew I had found my voice. I was once again at ease speaking. I was no longer trying to keep up. I could be natural within my new definition and this worked just all right. With this new realization I recognized an action I could take that makes sense.

I can speak out on Alzheimer’s. As one afflicted in the early stage I have the ability yet to communicate. I have the experience of this disease on which to assess what it is like to have it. I have the ability to talk about it and share it. It will give me the opportunity to make worth of having this disease.

In addition I still have some knowledge of the law and government both with which I was involved in practice. As a first step in this I have prepared, nearly finished, a paper describing what I learned about Estate Planning with Alzheimer’s prognosis as my future. What I learned is not pretty.

This gives me cause to advocate. We have a problem. Not just those of us and our families with the disease but the entire country. We are just the tip of the iceberg. There is more to come. The boomer population is just coming into the age orbit of the increase in incidence of this disease. At it now stands, if you have funded your own retirement there is a good chance that will go away before you or your spouse will have much with which to survive on retirement.

If everyone has to go on the public trough we are in bigger trouble. We have to find greater economy with which to care for folks with this disease that are not estate depleting as institutional nursing and assisted living care has become.

IV.

Beyond realizing, accepting, appreciating, another charge remains agenda for me.

In addition to action I have homework. In my home and in my family circle I must retain a real presence in my process. I must do the best I can. That means learn to accept that I can’t do it myself. I am now vulnerable. From that I cannot escape. Like never before I need love, help and support. This need is growing, exponentially. I must open myself to those around me and more so those with me: Our caretakers.

This is certainly an equal opportunity giving disease. Our loved ones face our loss more dramatically and more finally than we do. For them it is a moment at a time. They face the continuing degradation of who we are. They see who we are no longer and suffer its loss, bit by bit. They do this courageously, lovingly, kindly. They do not avert their eyes or walk away. They persevere.

They do this on dual tracks. They grieve what was; what is no more. Then they care for what remains and learn to love that, irascible and oblivious as we might be.

Too often as not we do not have a clue. We do not sense the loss as much as cope with what results. About this we become preoccupied. It’s said this disease is self centered; we are more that than we ever were. When we do pull inward they lose contact with us.

We ask: “what has changed? I don’t see a difference!” This can be so utterly painful for our loved ones, those caring for us. About this we are too unaware to recognize the difference, to empathize with them over their very real loss, to value the difficult task they undertake in caring for us. Least of all do we appreciate the alteration to their lives, the pain of which remains all too apparent to them. We don’t, we see so little of it. We are too caught up in what we are becoming.

The sum of it is expressed this way concerning Alzheimer’s:

Here I am trailing to death
In a wake of sorrows and sobs of those who see me go.
To the world around me my conscious dims,
My skill to care escapes my hand,
Weight I’ve become, and burden too.
And here presents my personal parody:
I must grasp and hold so tight
That tendered love provided me.
It commandeers, cares, does for me instead,
Standing in my place, their hand with mine,
Lovingly leading me along life’s final frame.

V.

The foregoing is not intended to sound despondent. I mean to sound real! Real and honest, that is my intent! Real in this:

1. There is a way of dealing with this disease. It is found in acceptance. That’s not so bad; in fact it gives direction for the final course.

2. In the new paradigm it provides direction to course, direction that is quite positive. Make the best of what we have. In that there is so much we can do and so much we have to do. I find this exhilarating. I have an agenda for this last chapter.

Honest in this:

3. Equally important if not more than the forgoing is my third point. We are not, we cannot and we won’t do it alone. Hey, we actively share our virus with our loved ones. It’s truly a family disease. This strikes me as so important and so easily forgotten as we deal with our plates overflowing beyond full. Help is there. We so badly need it. We must accept it. We must do this with love. We must in turn recognize the great love from which it offers and the tender concern behind it.

Behind that is our need to accommodate the cataclysmic disruption our disease creates with those loved ones, viz. our caregivers. We too easily lose view of that which is tragic. Their lives have been a transformed. Before, they had enough to do. Now they have ours piled on theirs to do. Their lives become lived for two, with little time for anything else. Sometimes we have the blessing of overlooking it. They do not. We are in their ever so conscious faces, all of the time.

Unfair as this seems, my heart must accept it. The only other option is inappropriate. More than inappropriate it is offensive to the tender made by the Caretaker. Such an insult it would be.

I am not despondent about my fare. I am trying to get my heart around the painful proposition this paradox provides. It isn’t pretty what the caretaker faces. Ours is so much easier. We but face the sunset and go to it in diminishing awareness. They must pick up after us.

To me it is my act of love to give this my awareness, to give this respect, to understand, empathize and lovingly grasp that which is offered me. Doing this my feeling are full, in awe and silently sacred.

What I do distress is this. I wish I had more to support this concern. Something said or seen to make my grief relieve for the pain my disease wreaks beyond me. I want to have this concern. I know there is love found in accepting it. I just don’t want that part to hurt so much.

I hope therefore this is not despairing but rather trying to cope and make the best of it.
Anonymous
Posted: Saturday, January 7, 2012 9:40 AM
Originally posted by: Jim Broede

I'd like to see you keep musing here, Mike. Because you have an upbeat, positive attitude. Very refreshing. You give care-givers something to think about. You know how to spur thinking. How to make us better care-givers. By thinking positively. By exuding good vibes. By making the best of the situation. --Jim
Anonymous
Posted: Saturday, January 7, 2012 9:40 AM
Originally posted by: Jim Broede

Look at it this way, Mike. You could have dropped dead yesterday. Instead, you're very much alive. And still quite with it. Mentally. And physically. But you have no guarantee that you won't be dead tomorrow. So, live today. To the fullest. Savor the day. I'd also suggest that you remind yourself that you're in love. With life. And maybe with a few people near and dear to you. Love 'em more than ever. That might be the best way to live your remaining days. It might prompt them, too, to love you more than ever. To appreciate you today. Think about your fate, too. What if the Creator gave you a choice? You could die suddenly of a stroke or heart attack or in a traffic accident or a plane crash. Or, instead, your life could be extended for several more years. And you'll fade away gradually. In a sense, you'll eventually lose your mind. But you'll still have some reasonably functioning time, maybe even years. Hard to say. I had my Jeanne for 13 years after the onset of Alzheimer's. She was functional to some degree right up to the end. I'm grateful for that. I think Jeanne chose to live as long as she did. Maybe because she loved life. But I know one thing. That time worked for me. I learned to love Jeanne more than ever. And maybe even someone around you will learn to love you more than ever. That would be a nice ending to your story, Mike. To your life. --Jim
Anonymous
Posted: Saturday, January 7, 2012 9:40 AM
Originally posted by: jenny k

Mike,

I think that it is a wonderful gift to your family that you are able to share your feelings about this disease; and I'm sure your wishes to your family about how you would like them to care for you. My mother is in stage 6 alz. My dad was in denial about the disease and I often wonder what she felt like in the beginning. It didn't seem like she ever knew what was happening to her. Family members tell me that my mom would approve of the care choices I have made for her, but having her in an alz. home still brings some feelings of guilt for me. Again, what a great gift you bring to your family to have the insight into the future of alz. and to be able to let them know your thoughts and wishes.
Anonymous
Posted: Saturday, January 7, 2012 9:40 AM
Originally posted by: john1943

Mike,

My wife has Alzheimer's, my mother died from it. I can feel myself slipping mentally but have no idea whether it is just old age or the beginning of my turn in the barrel.

Your focus seems to be about acceptance. My focus is on medical remedies as well as on various vitamin, mineral, and vegetable supplements that might delay the decline for my loved one (and me) so that when a cure is found it will not be too late for us.

The first step is, of course, to see a medical professional--someone who specializes in this disease. Don't take it for granted that your family doctor is necessarily the best person to help you manage your affliction.

Ask around about specialists in your area. Be persistent.

Do a lot of reading about alzheimer's on the internet. Be your own expert. This will not only give you new insights into exactly what you are dealing with, but also it will keep your mind active--just exercising your brain will help your brain.

Don't feel your situation is hopeless. There are an number of medications in the pipeline that hold a lot of promise.

Good luck.
Anonymous
Posted: Saturday, January 7, 2012 9:40 AM
Originally posted by: Val-Re

Mike,
In this offering you have given, you have given me more than you know. I think about the possibility having Alz. someday, and know it could be starting in some part of my bain now, silently,insidiously. You have spoken my fears and my hopes.
I would add just one thing. I feel that we are souls, in bodies. I believe that our souls do not depend on the status of our brains as they are not in those damaged neurons or amyloid plaques. Even though the brain may cease to function, I think our souls continue to receive love, even if the eyes are blank stares and are no longer the windows they once were. I believe you will feel all the love your wife and other loved ones send you and with which they comfort you. Your soul will know they are doing the best they can to be the both the arms to keep you from falling and the sheltering warmth to ease your fearfulness. Your soul will know. That is what I believe.
Thank you, Mike.
Peace. Joy in all your days.
Namaste.
Anonymous
Posted: Saturday, January 7, 2012 9:40 AM
Originally posted by: Mike Donohue

Thank you for the comment John. Everything you say is absolutely right. I too will do anything to support finding a cure.

I am addressing what we do in the meantime until that cure is found. We must maximize the value of our having it doing what is positive with it, and, above all being mindful of the love and loss of our caretakers who accompany us on this journey.

Mike
Anonymous
Posted: Saturday, January 7, 2012 9:40 AM
Originally posted by: Carolina Songbird

Welcome to the message boards from a neighbor, CFox. I live just over the state line in SC.

Please come back often -- and drop in over at the Caregivers forum. There's a lot more activity over there, with many people in the same circumstances you are who are ready to share encouragement, information and advice.
Anonymous
Posted: Saturday, January 7, 2012 9:40 AM
Originally posted by: CFox

Mike,

Such eloquence in the face of adversity. I read through your comment and realized that what you are saying has to be how my mom is feeling. Thank you.
Anonymous
Posted: Saturday, January 7, 2012 9:40 AM
Originally posted by: maebee

Welcome Mike,
When I first saw the length of your post, I intended to glance over it. I found myself reading and re-reading it. I am awed by your expressions. I would not presume to invalidate your outlook, as it is yours alone, not mine to change. I admire you, and hope to see more of your writing.