Sep 13, 2015

Is Alzheimer’s Really a Horrid, Dreadful, Cruel Disease?

Is Alzheimer’s Really a Horrid, Dreadful, Cruel Disease?

Is Alzheimer’s Really a Horrid, Dreadful, Cruel Disease?
How many times have you heard Alzheimer’s referred to using one or more of the above words?

How many times have you heard that Alzheimer’s robs its “victims” of their very humanity?

That it destroys their person hood?

Do these things really describe the disease?


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By Marie Marley
+Alzheimer's Reading Room

Yes, Alzheimer’s can be all of these things – and more - especially in the later stages of the condition. It can be dreadful and tragic. But sometimes it really isn’t. In some cases and to some extent it may depend on your attitude. The way you look at it. How you feel about it. Maybe an attitude adjustment is needed.

This can be a classic case of viewing the glass and half full rather than believing it to be half empty. Let’s look at some of hypothetical examples.

Let’s say the person doesn’t recognize you anymore. You may see that as one of the most horrible things in the world. You may be terribly distressed that your formerly affectionate loved one doesn’t even know who you are.

But let me ask you some questions. First, does the person appear to enjoy seeing you? And second – perhaps more importantly – is the person upset by this? Does he or she seem to be suffering because of it? These should be the issues that matter – not whether you are upset by it. Chances are your loved one may feel fine, enjoy your time together, and not be aware there’s any problem. Is that so horrid?

And in some cases when a person who has Alzheimer’s doesn’t recognize a loved one, that person may still be aware that they are loved, no matter who it is who loves them or what precisely the relationship with that person used to be.

Here’s another example. Suppose a formerly voracious reader can no longer even read the newspaper. You may think it’s tragic that a previously brilliant person can’t even read, for God’s sake.

But, again, ask yourself if that really matters. Is your loved one wringing his or her hands because of this development? It your loved one distressed over it? Is he or she even aware of not being able to read? Of how much he or she used to read?

If your loved one isn’t suffering neither should you. Ask yourself if, in the end, it’s really important for the person to be able to read? Does it really matter? Perhaps it isn’t tragic after all. If the person seems blissfully unaware that he or she can no longer read, you should just let it go.

But what about if the person is no longer able to talk? That’s horrid, isn’t it? Isn’t that cruel? Well maybe it is and maybe it isn’t. There are many ways you still may be able to reach the person. Nonverbal communication, for example, can make this possible. (See my previous article on this topic.)

Is Alzheimer’s really cruel?

I’ll tell you what’s cruel. Dying from cancer is cruel. It is so because the person who’s dying is aware he or she is dying and suffers greatly knowing this. A person who has Alzheimer’s may not have this awareness. Furthermore, the cancer patient may be in horrendous physical pain while waiting to die, whereas a person with Alzheimer’s may not be suffering physically.

I’ve often said that if I had my choice between dying with Alzheimer’s and dying with cancer, I’d choose Alzheimer’s. People have told me this is crazy, but it’s how I feel.

In the final analysis, what the person can no longer do isn’t important if he or she isn’t suffering because of it. Person hood and humanity don’t lie in things such as recognizing you, being able to read, being able to perform simple tasks or otherwise act normal.

Your loved one will never act normal again. You may as well accept that fact and stop trying to get him or her to act normal. It doesn’t really matter anymore if the person is normal.

What does matter is what the person still can do. Can he or she still smile at you? Does the person appear to be contented? Does he or she appear to enjoy music or art? To be positively affected by pets or children? To be contented if you read favorite poems or prayers? Maybe even to enjoy playing with a doll or little stuffed animals?

I don’t want to sound like a broken record, but this is important. You just might be able to gain contentedness, peace of mind and perhaps even joy if you can simply stop looking at the situation as horrible and start looking for whatever good you may see in it. You may change your life if you change your attitude and look for the silver lining.

Give it a try. Try really hard. Look for any shred of contentedness in your loved one and you may feel better. Even contented yourself. Yes, you may feel sad that your loved one has this disease but you may also realize that it isn’t really so horribly cruel after all.


Come Back Early Today | Alzheimer's Reading Room

Marie Marley is the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy

Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer’s caregivers.

She is also the co-author (with Daniel C. Potts, MD, FAAN) of the forthcoming book, “Finding Joy in Alzheimer’s: New Hope for Caregivers."


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