May 24, 2011

Caregiver’s Unite!

“Make New Friends and Keep the Old, One is Silver and the Other Gold”...

By Carol Blackwell
Alzheimer's Reading Room

Those are the words to a Girl Scout song I sang when I was young; and, I also taught to my Girl Scout troop decades ago when I was a troop leader. I think it also applies to our Alzheimer’s World.

Several comments in the Alzheimer’s Reading Room indicate that people think their friends abandon them as the dementia advances and I believe that can be true. However, that hasn’t happened to Bob so far, but maybe that is because he is still in a Late Early Stage/ Early Moderate stage of Alzheimer's.

Bob and I still travel with friends and go out to dinner, but not as frequently as we once did. We still feel we have a social life! On the other hand, there is also something to be said for meeting others who are facing the same issues we are. I think there are certain things that only someone who, as Bob DeMarco says, are ‘in the front row’ can understand and identify with.

When Bob was diagnosed with younger onset Alzheimer’s (younger than 65) 4 and a half years ago, we felt totally alone. I knew intellectually there are 5 million people in the US with AD, but I didn’t know any of them and had no idea where to turn to for help.

I found some information in the Alzheimer’s Association website, but when I called our local office 4 years ago, there was no support group near me and certainly nothing for those with younger onset AD.

While Alzheimer’s is a blow at any age, I think it is especially difficult for those who have not even hit their ‘golden years’ and who may be grappling with young children/teenagers at home. In addition, many in this situation have to retire on disability or a reduced income and that brings its own set of problems. It makes a tough situation even tougher.

In 2007 we became more involved with the Alzheimer’s Association. We attended a forum, Bob spoke at the Gala, and was on the Alzheimer’s Association Early Stage Advisor Group for one year. Through this, he began to meet others who had younger onset and we began to find a "community".

We know this is a large community, and we also know there are many more out there still struggling to find support. A small group of us decided to try and find others with younger onset AD and bring them into the circle (only if they wanted to come, of course!).

We had a small luncheon in January where 6 couples got together just to socialize. We enjoyed the luncheon immensely. As I think I said before, having Alzheimer’s is like finding yourself a member of a club you never wanted to join, but when you get there, you find there are a lot of great people as members.

Bob enjoyed talking with others who also struggle with finding the right words, and are frustrated with memory loss. I found comfort in talking with spouses who face what I do. We bonded!

 We decided to continue to find others and increase our community, so we called the Alzheimer’s Association to see if there are others in our circumstance who would like to get together. The Association must, of course, protect privacy, but there were two other couples who were interested so they gave them my name and we got together. The circle is getting larger!

Next, we are sponsoring a potluck picnic for those in the Washington DC area. It is on Sunday, June 5th from 1-4 PM at Cabin John Park, Pavilion G.

If you live in the area and are free that afternoon, please shoot an email to me at lovriver at aol dot com (use the standard email format) and come join our community! It is primarily aimed at those with younger onset, but we welcome others as well. Some, tips to find some "new friends" as you keep the old, whether you have younger onset or not:

  1. Call your local Alzheimer’s Association and see if there are other couples who might want to join a "community." Give them your name to contact if they are interested.
  2. Find a support group. Many of the groups become social and have dinner or other events several times a year.
  3. Some caregivers find some respite by doing what we used to do when our children were young. Have one caregiver take two people with AD to a movie, to a restaurant, on a short trip, etc. For two people I know, their husbands are the same age and both like to play squash. One takes both of them to a club to play and the other caregiver gets some much needed time. You could also plan outings with elderly parents—they might find new friends as well!
  4. Keep trying and don’t give up. If we give up the disease wins—don’t let it win! There are others out there like us; we just need to find them.

Our old friends are still there for us and the ‘gold’, I think, but for those living with the disease, there are ‘silver’ friends out there. Just as the Alzheimer’s Reading Room is a wonderful online support and caring community, we can build our own ‘mini’ community where we are. Let’s get started!

“Make New Friends and Keep the Old, One is Silver and the Other Gold”...

Subscribe to the Alzheimer's Reading Room
Enter Your Email Address

Carol Blackwell lives in Northern Virginia with her husband Bob. Bob was diagnosed with Alzheimer’s in 2006. Carol is a part time leadership coach and instructor. Both Carol and Bob are active advocates in the fight against Alzheimer's disease. Bob and Carol also blog on the USA Today website.

More Insight and Advice for Caregivers

The Alzheimer’s Action Plan: The Experts’ Guide to the Best Diag­no­sis and Treat­ment for Mem­ory Prob­lems
The 36-Hour Day A Family Guide to Caring for People with Alzheimer Disease

Original content Carol Blackwell, the Alzheimer's Reading Room