How do you tell others your loved one has Alzheimer’s disease?

By Lori La Bey of Senior Lifestyle Trends

Someone wrote me today with a very common question.  How do you tell others your loved one has Alzheimer’s disease?  This is one of the hardest things to address for a couple of reasons.  One every time you tell someone it becomes a bit more real, more undeniable.  Two, once you tell people you have to be prepared for all the questions, all the pity. 

Alzheimer’s is different from other illness.  There is no formal “Treatment Plan” that you walk away with.  There isn’t a fix to remove it or diminish it, like cancer.  There are things you can do to hopefully maintain someone’s current level of functioning.  I call it the “Slow Down Plan,” which usually includes some medication, activities, and eating healthy.  Due to the lack of a formal treatment plan, it makes it difficult for friends and family to know what to say to you, what questions to ask, or how to help you. 

We have not educated society on the disease so they have trouble understanding or accepting Alzheimer’s as a disease.  I think the time has come for patients and caregiver’s to talk openly and honestly about the disease and how it affects them in all aspects of their life.  

We don’t feel embarrassed to tell people someone has cancer, but people are so uncomfortable talking about memory loss.  Maybe because the disease has no beginning, middle, or end.  There is no way to know how any individual diagnosed with the disease will react to the disease. There is no way to know how long they will live or what their quality of life will be.   There is one thing that does typically happen though.  The person with Alzheimer’s disease either pulls back from interacting with others willingly afraid of making a mistake or being judged, or they are cut off from interaction with others due to our discomfort as a society.

We need to ask ourselves this question to put things into perspective –

Are we going to be the next to forget or the next to be forgotten?

When we ask ourselves this question it is typical to get this ping in your head, your heart, and your stomach that says “WOW, I could be next!  How do I want to be treated?”  It is from this angle of fear we can start talking honestly to educate others what the true face of Alzheimer’s disease is.  What it takes away from us, but also what is has to offer each of us. 

I am a believer there can be no good if there is no bad.  You can’t feel happy if you don’t experience sad…  Disease offers the same platform of balance if we chose to look for it and utilize it.

For me, as difficult as it was to lose my Mother, piece by piece over the years, I have found she has taught me much through her disease that has had an extremely positive effect on my life. 

The disease has taught me many things.  Here is a list of just a few things:

To slow down my pace in life. 

To appreciate the simple pleasures I often didn’t see because I was moving too fast or waiting in anticipation for the “BIG THINGS.”

To communicate on a more intimate level.

To train my brain to be aware of my senses, at a higher level.

To not take life so seriously.

To stop trying to control everything and everybody in my life.

To have a deeper and stronger faith then I ever thought was imaginable.

To love unconditionally.

To recognize what brings me joy and to incorporate it in my life.

To remove judgment of others and myself.

That I am stronger then I knew I was.

That done is better than perfect.

That life is so much easier if I keep my sense of humor and can laugh through it.

Last, the thing I will mention and the one that has changed my life the most is

I’ve learned each time I am given a painful or uncomfortable situation is my life there is a powerful lesson buried in the situation which will ease my life in the future, if I choose to remember it and be guided by it.

I think it is time we start to acknowledge our pain and discomfort with things in our life, like Alzheimer’s disease.  We need to stop living the ‘Stepford Wives” life trying to project the “Leave it Beaver” family as we try to keep up with “The Jones.”   It’s time to be honest with what is going on in our lives.  Once we do this we can ask for help from our friends and family, through organizations, and through prayer.  After we do this we must be silent and listen for the answers.  It is then up to us to decide if we are going to take action by the answers given us, knowing we are the only ones that can change us.  We cannot change others.  It is time to step out and step up; and lead by example.

Here are two stories I would love you to read.  The first will help you answer that painful question often asked, “Does your loved one know who you are?”  The second, will give you a new perspective of how to handle the inevitable decline.

SO WHY IS A NAME SO IMPORTANT ANYWAYS?

http://alzheimersspeaks.com/2009/08/01/so-why-is-a-name-so-important/

DIGNITY OR EGO

http://alzheimersspeaks.com/2009/08/28/dignity-or-ego/