JOAN’S BLOG -  TUES/WED., AUGUST 18/19, 2009 –ALZHEIMER’S DISEASE AND THE LOSS OF A SOCIAL NETWORK  – Updated from 2007 version

Recently, there has been a lot of discussion on the message boards about the loss of friends and socialization as a consequence of your spouses’ Alzheimer’s Disease. It prompted me to pull up a very early blog I wrote on this subject and update it.

Many of you have expressed frustration and sadness over the loss of friends as the disease progresses. Friends stop calling, stop coming over to visit; stop socializing with you and your spouse. This is a cruel development that we certainly don’t need as we lose the companionship of our spouses. Then I started thinking about why it happens, and, as is always my goal on this website, tried to analyze the situation and to look for solutions (or acceptance, if there are no solutions) to the problem.

Friendship is a relationship, similar to marriage. You choose your friends based upon mutual interests and compatibility. Friends meet our emotional needs in ways different than spouses. We can complain to them about our jobs; the annoying habits of our spouses when they were healthy; and they understand and relate; we can share childrearing difficulties; we can go places with a “girl” friend that do not interest our spouses; The guys can go places with their “guy” friends that do not interest us wives. We can go places together that interest all of us. Friendship is often fluid and changing – we may remain “in touch” with lifelong friends, but as we physically move to other areas, and developmentally and emotionally move on in our lives, we develop friendships with new people who meet our needs at a particular time. As adults, often these friendships last 20 and 30 years or more. These are the people we never expect to let us down and abandon us when AD strikes.

 Maybe you and your friends enjoyed motorcycling together; maybe you were the intellectual chess playing types; maybe you couldn’t wait to get together and go boating together. Maybe you just hung out and were couch potatoes together in front of the TV.  It doesn’t matter what your interests were – you enjoyed them together as friends.  Alzheimer’s Disease slowly erodes your spouses’ ability to engage in these activities with friends. If “Joe” can no longer ride a motorcycle, you and Joe are not going to be called to join in on a motorcycle ride. If “Bill” no longer has the mental capacity for chess, you and Bill are out of the chess club. Losing this comradeship and mutual enjoyment of friends’ company in activities is difficult, but understandable if you look at it from your old friends’ point of view that you and your spouse no longer “fit in”.

We have established the fact that you and your friends can no longer enjoy mutually satisfying activities together. But what is the excuse for not offering emotional support in the way of a phone call;  an offer to run an errand for you;  an offer to go out for coffee with you, the caregiver; an offer for the friend to take his/her AD afflicted “friend” out for a walk? In my opinion, there are no excuses. Explanations, maybe, but no excuses. So here are the time-worn explanations:

• People feel uncomfortable – I say – want to feel uncomfortable? Try losing a spouse piece by piece to Alzheimer’s Disease.
• People don’t know what to say. I say – Get over it. Pick up the phone and ask your friend what you can do for them.
• People are uninformed about the disease – I say – This is the 21st century – ever hear of the Internet? Find out about this terrible disease that has afflicted your friend. 

Of course, your friends are not reading this – you are. You can choose to bring up the above issues with them in a quiet, non-threatening, helpful, informative manner, OR NOT. Ultimately, as all the professionals tell us, there is nothing you can do about other people’s actions – you can only change your own response to them. So – move on and if possible, cultivate friends in your support group. Remember – friendships are fluid – we make friends based on mutual interests and ability to meet each others’ emotional needs. There is a comfort level with Support Group friends that you will never have with your other friends, no matter how many years you had enjoyed the friendship. There is patience for the slow processing and speaking of the AD spouse; there is support and understanding among the AD afflicted for the problems they are each experiencing; there is support and understanding among the care giving spouses and the challenges they are facing. There is humor that only we caregivers and spouses can appreciate.  

The next logical question is – “What if I do not have a support group?”  There are countless posts on the message boards that tell of not having a support group like mine – where spouses get together socially, but also of not having a support group at all. That makes it extremely difficult to have any kind of social network. You could try making friends with the spouses you may meet at your spouses’ Day Care.  You could call the Alzheimer’s Association in your area and advocate (be a pest) for a “couples” support group. That is the way our support group was started. A care giver husband came up with the idea, pushed the Alzheimer’s Association social workers in our area, and the group was born. If you are interested, tell your social workers or Alzheimer’s Association liaison to contact me, and I will put them in touch with my social workers.

If forming a “couples” social network is no longer possible, due to the severity of your spouse’s condition, you will have to venture out on your own. Many of our members have formed friendships with singles and or widows/widowers. They go to lunch, golf, movies, theaters. It most likely is not what you had hoped for; it is not what you may want. The situation is far from ideal, but we have to do the best with what we have, and what many of you have is a partner who can no longer participate in “couples” activities. It is another sad and lonely consequence of Alzheimer’s Disease.

Please post message board comments under the existing topic: New Member - Random Thoughts - Socialization

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©Copyright 2009 Joan Gershman 
The Alzheimer Spouse LLC
2009 All Rights Reserved

The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.

The Alzheimer Spouse LLC 2009 All Rights Reserved