Jun 3, 2011

Alzheimer's Off the Top of My Head -- Get Your Head Out of the Sand

I have to start practicing my new 7 word speech -- Get your head out of the sand...
By Bob DeMarco
Alzheimer's Reading Room

When it all started, I decided to move into my mother's condominium and keep her in her own home. I did this because I concluded after reading some of the literature, that moving her into a new environment would be too difficult and disconcerting for her. As a result, I ended up living in an over 55 community where a large fraction of the residence are 75 years or older. When it comes to Alzheimer's and dementia I have received an eye opening education.

One by one I watched friends and acquaintances of my mother fall into dementia. More often than not their children do little or nothing as the disease starts to progress. The children often watch the parent deteriorate until there is no alternative to full time care.

I watched as one person had one automobile accident, then a second before their children concluded there was something wrong. I tried to alert them before the first accident, and after the first accident.

I watched another go from mild dementia to full blown Alzheimer's almost overnight because nothing was being done by the family, or the personal care physician. I tried to do something. I failed.

I suggested to all of them that they get some memory testing, and a neurological or geriatric consult. They didn't listen.

In the future I will start adding this, I hope you don't regret your decision not to move on this now. I'll want to say more, maybe even shout, but I'll bite my tongue. I am not a doctor, just a friend.

It is only after you become a caregiver that you begin to understand the importance of early diagnosis. Believe it or not, as hard as caring for someone with Alzheimer's can be, it is likely to be much worse if you stick your head in the sand.

Hmm, there is a good idea. Maybe instead of reasoning with the children, or by explaining the signs, maybe I'll say, get your hand out of the sand. Just those few words. When they ask what I mean I'll say, you figure it out.

You might be thinking, Bob that is stupid. Well, so far using my usual communication techniques I am batting zero. So I can't do any worse.

I doubt that many people understand that not only are they hurting the person suffering from dementia by failing to act -- they are hurting themselves.

I learned, over these years, that most personal care physicians are not good at detecting Alzheimer's or dementia. It is not their fault. Alzheimer's is hard to spot under most circumstances. It is not easy to do when you see a person for ten minutes every few months.

Alzheimer's is a tricky little disease. My mother, well past the moderate stage, could fool any doctor -- right now. She could probably fool you if you are not a ONE. On the other hand, come on over and spend a day with us. You will have no doubt.

Now that I think about, she still fools me.

In the beginning, observing the children's lack of attenion and care for their parents made me very angry. Over time, I came to understand how difficult this situation can be for children that are busy living their own lives. Like I was, they are unequipped to understand Alzheimer's and dementia when it strikes.

As adults we are not well equipped to become the parents of the parent. I never had that course in college. The children of baby boomers are going to get one heck of an education. The smart one's should start now -- get ahead of the curve.

I now believe the single biggest reason Alzheimer's sufferers fail to get diagnosed early and get treatment is denial on the part of the children; and, because personal care doctors are not properly trained. One in 8 people over the age of 65 suffers from Alzheimer's disease or one of the other types of dementia. Yo Doc, suspect it all the time. Look for it. Hunt. Be a doctor.

I know when the diagnosis comes, family and friends of the sufferer often can't believe it, and often refuse to believe the diagnosis. I have discussed this with many caregivers and many agree. It happened in our case--with family and friends. They just can't comprhend or accept Alzheimer's disease. This is now understandable to me. Alzheimer's is hard to understand and comprehend even when you sit in the front row.

Alzheimer's and dementia are hard to comprehend. I use the word comprehend with purpose. I recognized the situation with my mother, but it took me more than one full year to begin to deal with the problem effectively. Keep in mind, this was all I was doing day and night -- learning and assessing the alternatives. At that time, there wasn't much good information available. Fortunately, this has changed.

I learned on the job. Full time. I am now convinced that if I had not acted in the way I did, when I did, that something horrible would have happened. I base this on the fact that I have seen the horrible that comes with inaction and denial.

Keep this in mind, you are still alive after experiencing the horrible. Think about it.

I now have a better understanding of why seventy percent of Alzheimer's patients do not get diagnosed early. Many sufferers don't get diagnosed properly until they need full time care. Until they "can't do it anymore", or until something near devastiting happens. Automobile accident, lost and wandering, scammed out of their life savings, or a precipitous drop in health usually serves as a wake up call. But, not always.

If you are related to someone over 75, you really need to start getting educated now. If you know someone approaching 85, I suggest you start reading the books on Alzheimer's now.

Please know and try to understand this---nearly one out of every two persons over the age of 85 suffers from Alzheimer's or another type of dementia. If you don't know one, you will soon.

I bet if I told you that you were going to die if you didn't lose 50 pounds you would do something about it. I bet if I told you you were going to live to be 95 years old, you still wouldn't do anything to try and prevent Alzheimer's.

Consider this. When your brain starts dying you will lose the ability to do all these things: brush your teeth, take a shower, put your cloths on, take a poop, and eventually you won't be able to swallow. While this is happening your heart will still be working. You will still be breathing. Brain death is ugly.

My mother is 94 and she is still going. We were lucky we got her treated early on. Nevertheless, all the things I described above are happening.

Okay I have to go.

I have to start practicing my new 7 word speech -- Get your head out of the sand.

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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 2,680 articles with more than 512,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room