As a primary care physician, I walk with my patients as they face many of life’s challenges. Facing the diagnosis of dementia may be one of the hardest. Any chronic illness involves loss, but dementia threatens the loss of not only ability and independence, but of the very self.
It is important to realize that people with dementia can have rich and rewarding lives. For most patients there is an initial period where their losses are mild. There is likely time to work on that bucket list, to enjoy hobbies new and old, and laugh with loved ones, even if you are eventually playing Hearts instead of Bridge. While we grieve the loss of what was and of what we expected for the future, we can lose sight of what remains. It is a very human and very understandable response, but it can also waste precious time.
The early stages of dementia provide an important opportunity for patients and the people who love them to consider the future. People with dementia face the near certainty that they will eventually be unable to make decisions for themselves, decisions in keeping with values and preferences they have held all their lives. Developing an advance directive is something many of us put off for some nebulous “later”. Doing it now can ensure that our wishes are known and honored when we can no longer express them. It is also an incredible gift to give our loved ones. I’ve lost count of the number of times I have watched a grieving family clutch that piece of paper to remind themselves that “this is what mom wanted” as they make difficult decisions.
Early on after the diagnosis is also a time to nurture relationships that will provide support for the person diagnosed with dementia and their care partner going forward. Professional help is available and sometimes the best option, but community support is invaluable, and irreplaceable. Family and friends can offer support and social contact, be it a cup of coffee and a listening ear, or a friendly round of golf, just like the old days. As the disease progresses, the support might be more substantial, such as a ride to the grocery store for someone who can no longer safely drive or keeping an old friend company so their spouse can go to the doctor, or get a haircut, or just take break.
As we have seen during the pandemic, suffering from any disease in isolation is lonely and frightening. Regardless of the diagnosis we might face, we can take the time now to make our wishes known and build up our community of family and friends. Ask for, and offer, support. As the old Beatles’ song suggests, we get by with a little help from our friends.
Debra Johnston, MD is part of The Prairie Doc® team of physicians and currently practices family medicine in Brookings, South Dakota. For free and easy access to the entire Prairie Doc® library, visit www.prairiedoc.org and follow Prairie Doc® on Facebook, featuring On Call with the Prairie Doc® a medical Q&A show streamed most Thursdays at 7 p.m. central.
