Apr 1, 2010

Reader Needs Our Help and Advice -- Calling on the Collective Brain of the Alzheimer's Reading Room

Calling on all readers to offer advice and support....
By Bob DeMarco
Alzheimer's Reading Room

Earlier today I received the email below from a new reader. She is in need of our help, insight, and advice.
I just found your website and found it very informative and inspiring. I am a “long distance caregiver” for my mom in Florida (I live in NY). She has just been diagnosed with early Alzheimers – more specifically MCI. My problem is that she is not trying to help herself get better – she is in denial and does nothing but sit home all day, sleep, etc. She has no social life, does not read, does not stimulate her brain. I have tried to talk with her and taken her to see an Independent (not assisted) living community near her home (she lives alone). I am so scared that without any stimulation what so ever, that the MCI will definitely progress into Alzheimer’s. I have been reading and reading and know that stimulation of any kind is beneficial.

I am so frustrated and so worried. I contacted a support group up here, but quite honestly, they weren’t very helpful.

I would appreciate any guidance you can give me.

If you have any insight, advice, or words of wisdom, please use the comments section below this article to share your thoughts.

If you belong to a "real world" or online support group you might ask others to come in and offer some insight and advice. Support group moderators are also encouraged to comment.

This is my initial email response to our reader. I'll give this additional thought.


I can understand your feelings and situation. When my mother was starting to exhibit "strange" behavior" I lived in NYC (and Reston, Va).

That was six years ago. To this day, my mother swears there is nothing wrong with her. She does not know she suffers from Alzheimer's disease. This is common in the elderly.

Don't let this drive you crazy.

Just the other day, one of our neighbors that knows my mother has Alzheimer's told me how amazing it is that my mother only takes one medication. I asked how did you find that out? He said, she told me a couple of days ago. He believed her. She takes seven medications and has been for years.

None of my mother's close friends believed there was anything wrong with her other than old age -- even years after she was diagnosed.

There are a long list of reasons why people have trouble identifying, accepting and understanding Alzheimer's. Denial is one. Don't let others that don't understand or cannot comprehend the situation drive you crazy. It happens to most of us.

Here is my first advice. Keep in mind, I am not a doctor.

You should try to get your mother on the combination of Aricept and Namenda. I don't know about your doctor or you health insurance so there could be obstacles.

If I knew then, what I know today, I would have gotten my mother on the combination of Aricept and Namenda the day we received the diagnosis.

Here are some of the articles I wrote on the Alzheimer's Reading Room around this issue.

I suggest you read this article.

Is it really Alzheimer's or something else?

Consider getting your mother's doctor to check her thyroid closely. If the result is "suspicious" or borderline, try an appropriate medication. Doctors do not routinely order the test for the thyroid on blood tests.

I have a list of articles that might be of help. They basically chronicle many of my own experiences and are written to provide insight and advice.

Advice and Insight -- Alzheimer's Caregiving

You might want to try additional support groups. It is not unusual for a person to try 2 or 3 times before they find a support group that "works for them". You might try to find a group of long distance caregivers.

I am remembering the day when I heard the word for the first time -- Alzheimer's. At the minimum it can send you into a "tizzy" and short circuit your brain.

You'll need to learn and understand that it will now be very difficult to communicate with your mother. You might not be able to reason with her -- this is a common problem. She might get mean when you try to help her -- this is common.

One thing that really helps and makes a difference is coming to the understanding that you are not Alone.

There are ten million of us. For me, this is a source of strength. Meeting and talking to other Alzheimer's caregivers can change your life. They understand how you are feeling and they are often full of advice and insight. You might have to search to find the right person(s), it won't take forever though -- we are everywhere.

Meeting someone that lived in the front row with a person suffering from Alzheimer's can often be enlightening. This is especially true if you meet someone that has gone the entire trip to the very end. They have had time to digest the experience. When they are empathetic they can offer a kind of help that is rare and life changing.

The fact that you are worried and frustrated is a good thing even though you might not realize this right now. This shows you care. Alzheimer's caregiving is a gift.

Best regards,
Bob DeMarco
Alzheimer's Reading Room

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More About the Alzheimer's Reading Room

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,300 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room