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Joan Sutton

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Alzheimer's Has Robbed My Husband and Me

Posted: 09/11/2012 7:44 am

Given that we are in the neurologist's office at my request, I should not have been surprised --no, not surprised, floored or shocked -- by the diagnosis. But I was. The doctor's visit was prompted by a cluster of seemingly small incidents. First, my husband wearing two different shoes. Well, anyone can do that, so it's not a big concern. But as he has the elegance of Fred Astaire, and manages to look like a fashion plate in fishing clothes, it is a bit troubling. But one laughs, and makes a joke of it, and he changes to a matching pair.

The next incident is more worrisome. When we are home, our routine is I make breakfast and dinner, and he makes lunch. But one day, there is no lunch and when I ask if we are going out to eat he replies that he has already eaten, that he had lunch with John L. As John L has been dead for several years, I am thrown but I don't say anything, just go and make a sandwich for both of us. He eats his and later in the day comes to me and says, "I think I did something foolish earlier today." I hug him and tell him that is not foolish to think so vividly of a beloved friend.

But now I am more watchful. The third incident is a telephone call from the bank, saying that we have a quite considerable overdraft. That is so unlike my Princeton economics educated husband that it is very clear that there is something wrong.

Soon we are at the neurologist's office where a battery of tests are arranged. When he takes the cognitive ones I am in the room and I realize for the first time how dependent he has become on me. Asked something, he looks to me. The doctor suggests that I sit behind him. Challenged to list alphabetically four-legged animals, he gets to "F", and then comes up with not a four-letter animal but a four-letter word.

That is the beginning of his many attempts in the coming years to turn the subject away from what he cannot do with a caustic remark or humour. The cognitive tests are followed by various scans and then I find myself standing in the doctor's office, hearing those words, early dementia, first stage Alzheimer's.

I don't believe it. I have a picture in mind of the Alzheimer's patient: angry, untidy, unable to feed him or herself, not recognizing people, wandering off mindlessly. My husband is not like that. Not anything like that. Yes, there are these troubling incidents, but he is getting older and surely this is just aging. And if it isn't just that then perhaps a small stroke, or some manageable take-this-pill and it will all go away treatment. Please.

I fail to recognize that my mental portrait of the Alzheimer's patient is someone in the last stages: the first stages of the disease do not look anything like that. And so, I begin the doctor search. One, two, three, all concurring. And my husband becoming more and more tired of the routine, dressing, undressing, being poked and prodded, asked to memorize, remember several different items, to draw a clock. Finally, I realize that I am doing this not for him, but for myself. I want the answer to be different. Clearly, it will not be. Like it or not, and I don't, I have to accept it.

And so, my beloved husband became one of the five million Americans diagnosed with this thief of a disease. And one of the first things I learned is that the number is grossly inaccurate. That's only the United States -- the numbers affected worldwide would be staggering.

What's more for every human being diagnosed, there is a circle of others -- partners, family, friends, employers, employees -- who are also victims, robbed of memory and relationships. Society recognizes the caregivers, and the heavy burden they bear. But others too pay the emotional, physical and financial price -- children, becoming parents to their parents, grandchildren, deprived of that special relationship, partners who see years of intimacy vanish as if they never were, and society itself, robbed of all that brain power, burdened by the cost of care.

And so, six years ago, I began my long journey, what Nancy Reagan has described as the long goodbye.

 
FOLLOW CANADA LIVING
Given that we are in the neurologist's office at my request, I should not have been surprised --no, not surprised, floored or shocked -- by the diagnosis. But I was. The doctor's visit was prompted by...
Given that we are in the neurologist's office at my request, I should not have been surprised --no, not surprised, floored or shocked -- by the diagnosis. But I was. The doctor's visit was prompted by...
 
 
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01:03 PM on 10/17/2012
Dear Joan, don't want to get your hopes up but have you seen this simple treatment using coconut oil? http://www.cbn.com/media/player/index.aspx?s=/mp4/LJO190v1_WS
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mattgarodan
Natural 20!
01:23 PM on 09/12/2012
I know all to well the pain of losing a loved one to Alzheimer's. Even though she died four years ago, I still remember my grandmother, and I miss her terribly. My heart goes out to you, Joan, and if I could, I'd give you a hug.
08:44 AM on 09/13/2012
and a hug is coming your way. Thank you for reading, and commenting. JS
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Larry Motuz
More prayers, fewer preyers.
07:42 AM on 09/12/2012
My heart goes out to you.

If you can, reach into your memory for the best of times throughout these worst of times.

And take care of yourself.

It isn't selfish to do that, for only by caring for yourself will you have the strength to care for him.
08:39 AM on 09/12/2012
Thank you. Yes, I have learned that I can't take care of someone else if I don't take care of myself, and I will be writing about that in future articles. Hope you will stick with me.....
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Larry Motuz
More prayers, fewer preyers.
10:21 PM on 09/12/2012
Will do.
02:03 AM on 09/12/2012
Joan, thank you for your openness in sharing this. Hearing about what you are going through is gut wrenching. By writing this, though, I'm sure you've helped many people feel less alone in what they are going through. Best wishes to you.
08:40 AM on 09/12/2012
Thank you. It is difficult to discuss the private so publicly, but I do think we need to speak out about AD.
08:36 PM on 09/11/2012
A couple of years before my grandmother passed away I was visitng her in the home. She had been flitting in and out of lucidity for a while. I'd been told that when i have short hair I look like my grandfather in profile. My grandfather died a few years before I was born.

My Grandmother took my hand and squeezed it. She said 'I've missed you, John'. All i could do was squeeze her hand back and say 'I've missed you too, Lucy'.

She held on and didn't want to let go. This was my Grandmother who would really only hug or hold hands fleetingly. It both touched me and broke my heart. You are right about it being a long goodbye. I guess it's almost a blessing that she passed away before she was completely gone.
03:19 AM on 09/12/2012
Thank you for sharing this with me. js
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10:37 AM on 09/11/2012
My mom died, after having Alzheimers for years, absolutely suddenly one day just after dad had fed her dinner and was sitting beside her. Even after having Alzheimers for years she felt secure and loved and would smile and flirt with dad with her eyes. My dad felt the worst when she actually died and would rather have had her those years for him to care for than not had her at all. He still swears she was as beautiful the day she died after years of having Alzheimers as she was the day he married her. Their years of intimacy didn't vanish when mom developed Alzheimers; that's kind of like saying love ends. My dad, even in his '70's took care of mom patiently at home until she couldn't walk and he couldn't lift her anymore into the tub to bath; he even put her hair in pin curls and helped her put on her red lipstick because she had always cared about her appearance; when she had to go into an extended care home, just a few blocks from where they lived, dad made all her meals at home and took them over three times a day to feed her. She always felt so secure and content. Her basic sweet personality never changed and she always knew dad was special. I think the worst thing about Alzheimers is many people will spend the rest of their lives angry, resentful, and victimized.
03:18 AM on 09/12/2012
What a beautiful love story. thank you for sharing it with me.
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TonyOnly
Truth matters.
09:14 AM on 09/11/2012
"And so, six years ago, I began my long journey, what Nancy Reagan has described as the long goodbye."

First of all, my sincerest condolences on the unfair battle that you and your husband are being forced to fight. A battle that, unfortunately, has no possibility of a happy ending.

The thing about Alzheimer's is, it's a mental disorder that often has no life threatening physical ailment accompanying it. So the degeneration can reach the point of complete incapacitation before life completes it's natural cycle.

My grandmother reached the point where just feeding her was only possible intravenously, before the doctors made the decision they had to stop. Unfortunately, they unknowingly made that decision on the same day my father died. I had to arrange 2 funerals in one week.

I don't know of any disease that's more difficult for those closest to the patient to deal with than Alzheimer's. It also "robs" them of their lives. If there's one thing I could say to you, Mrs.Sutton, it's "Take care of yourself also. For you, life has to go on."
03:10 PM on 09/11/2012
Thank you. Yes, I have learned that I can't take care of someone else, if I don't take care of myself. But that was a hard lesson to learn.
08:57 AM on 09/11/2012
I'm so very sorry - and thank you. I hope that your long goodbye is more sweet than bitter......
03:10 PM on 09/11/2012
It is, of course, both - js
08:36 AM on 09/11/2012
Alzheimer's Has Robbed My Husband And ME