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

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.



6 Replies to “How do you tell others your loved one has Alzheimer’s disease?”

  1. Great post Lori,

    I really like you attitude and ideas about working with someone who has Alzheimer’s. How did you get to the place that you are mentally. Did you go to any Alz support groups or read any materials to get a better grip on this issue.

    I work on an eldercare blog and we try to provide Alz resources when we can. If you have any good ones in mind, I would love the advice.


  2. Hi Will,

    Thanks for your comment!

    I have to tell you I haven’t done anything “special” to get to this place mentally other then pay attention to the signs and signals from my Mom along the way. In addition, I also would take classes, go to presentations, pick up a book… as they fit my schedule.

    Sad to say there is one no answer, other then ATTITUDE! I kept my mind open to learn new ways, seek out ways to remove my Mom’s fear as well as the fear family and friends had dealing with the disease. I allowed myself to fully feel the pain of the disease so I could move through it and ask for help privately to my God and the Universe. Then I stayed still and listened for the answers, and tried them out.

    I always felt I had nothing to loose by trying. Typically whatever I was told to do, or I felt I should do after praying or meditating (whatever you want to call it doesn’t matter), worked like a charm. Sometimes it would only work once, and other times for an extended period. Truth be told it is not about how long does it work for. It is all about creating moments of joy – concentrating on the 3 keys factors: Are they HAPPY, SAFE, & PAINFUL.

    It is all very simple once you adjust your attitude and accept the situation for what it is, knowing down deep you can’t change the disease, but you can change how you choose to deal with it and how you interact with a person who has Alzheimer’s.

    Last I wanted to let you know I will be adding your blog to the Alzheimer’s Speaks resource website at under great reads then under blogs. Keep up the great work!

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