The journey of dementia brings many unexpected changes. One of these is how it affects social and family relationships that have remained unchanged and that we have come to rely upon and take for granted.
Some of the saddest expressions of grief I have heard in my support groups are about how friends drift away as the characteristics of dementia become more obvious. The foursome your husband has played golf with for years suddenly schedules a tee-time without inviting him. The couple you’ve had lunch with every Sunday after church suddenly says “something came up” and can no longer join you. The casual morning coffee klatch at McDonalds decides to try another restaurant, but fails to mention its location to their member with emerging dementia.
Unfortunately, these reactions are almost inevitable. Social abandonment of the person with dementia is common, it is cruel, and it is sometimes more hurtful than the disease itself.
Abandoning friends with dementia seems so terribly selfish, but – like so many hurtful behaviors – it is rooted in ignorance and fear. An AARP survey found that Alzheimer’s disease and other forms of dementia are America’s most feared medical condition, standing above cancer, heart disease, and stroke. Ninety percent of us will live out our lives without contracting any form of dementia, but most people don’t know this. They think it is far more common than it actually is, and they think it is deeply hereditary, though this also is not the truth. And sometimes we behave like we think it is contagious, which it is not!
We believe that our friends who drift away are afraid of being embarrassed by the behavior of our person with dementia, but they more likely don’t trust their own behavior, thinking that they – in their ignorance of the disease – will trigger embarrassing situations. They don’t intend to be cruel; they simply are uneducated as to how to handle a new and strange situation. We need to help them and give them an opportunity to remain our friends. But how?
Those of us coping with dementia have a great power to educate, and we should try this sooner rather than later. Early on, before the so-called “behaviors” have begun to emerge, talk to your close friends. Explain what has happened. Tell them you value their friendship and need it more than ever. Tell them that social relationships continue to be important to the quality of life of your loved one who has recently been diagnosed with dementia. Ask them to be patient and learn with you. Your loved one is still who they always were, but they are changing.
If education works, you will gain a stronger bond of friendship than ever before. If it doesn’t. and your “friends” rush for the door, at least you have learned this under your own terms, and not later when your loved one with dementia might be less capable of understanding why their friends are no longer around.
When friends drift away, I tell my support group members to make new friends, which are already at hand within the group. I have seen relationships form that became deep and powerful and continued beyond the passing of their loved ones with dementia.
If dementia means that we no longer “fit in,” this does not mean we should drop out. Try not to isolate. We have the right to create our own world, our own circumstances, and our own relationships that are more comfortable for us and our loved one.
We have this right because we all deserve the best.
Debbie Selsavage is a Certified Trainer and Consultant in the Positive Approach to Care®, and a Certified Dementia Practitioner. Her company, Coping with Dementia LLC, is dedicated to making life better for individuals living with dementia. Contact Debbie at deb@coping.today to learn about free support groups on line.
Until next time remember: “We all deserve the Best”
Send your comments and stories to deb@coping.today