Winter citrus and ginger tea
Leftover oatmeal muffins

We all need ramps

Dad

It’s not often that I hear something new. It must be my age. But a presentation I attended earlier this week, part of the "Friends Across the Ages" speaker series, had such a different spin on it that it really opened my mind. It was on dementia, which is not a favorite subject of mine. It hits too close to home; my father has it as did both of my grandmothers, and I am, honestly, terrified of it. I dragged myself to this meeting because the title held a little promise: “Strengthening Relationships with Those in Your Life Who are Dealing with Memory Loss.” I went out of daughterly duty to my dad, hoping for something to help my family. I came out with a new perspective, and a good deal of hope.

Carolyn Lukert, from the Center for Dementia Education, opened by asking what our reaction might be if a friend or family-member called to tell us they had just been diagnosed with dementia. The responses were variations on a theme: sadness, grief, fear, confusion… She went on to say that many people feel the way I do – that they would rather die than get the diagnosis.  My father said the same thing once. A diagnosis of dementia, for many of us, is not only a death sentence, but a tragedy – a dehumanizing tragedy where the victim will live the rest of his or her life embarrassing others and humiliating him/herself. How else to respond but with sorrow?

Well. Lukert framed it as a diagnosis similar to what cancer was fifty years ago. You got the diagnosis and disappeared, prepared to suffer. It seems unbelievable now, but my own grandmother and grandfather were so embarrassed by her breast cancer symptoms that they wouldn’t speak of it. Now we have pink ribbons and speeches and marathons and all kinds of support. We walk with people with cancer and laud them as “survivors,” however long that survival lasts. We have learned to accompany people with cancer, to appreciate their struggle and to help them continue to live their lives with human dignity and grace.

Is it possible that a change in attitude could transform a dementia diagnosis as well?  It is according to Lukert.  Yes, people with dementia may say and do embarrassing things, and god forbid we should feel awkward, but what if we granted them the same abundant patience and humor we do with young family members? What if we concentrated on spending meaningful time with our loved ones with dementia instead of shunning them because “they don’t know whether we’re there or not.” What if we learned to help them enjoy their lives, making accommodations when they become confused or agitated? How can we educate them, as well as ourselves, to better handle their loss of mental capacity – much like we educate people with cancer to handle their losses? Lukert gives a number of practical suggestions from how to touch them and talk with them to how to accompany them in doing the things that have always given them pleasure – from shopping to going to baseball games. She suggests that by offering to help a dementia patient count change at the grocery store, order at a restaurant, or re-meet an old friend we are doing something similar to what we do to help folks in wheelchairs enjoy life to the fullest. We build ramps.

These are ramps of understanding and good humor and love for people regardless of their mental capacity. She brought up some examples from her own experience of visiting residents in a nursing home where the right kind of touch, tone of voice, and attention could reach a person in the most advanced stages of dementia. It’s our responsibility to learn how to accompany people through this disease, to endure the awkwardness, to help them to enjoy their life as much as possible for as long as possible – out of love and out of respect for their continued humanity.  We all need ramps at times, and often it is these very people who made them for us when we were young or lost or needing help and guidance in our own changing lives. There is so much real life to be lived and shared during difficult times of change; it's a shame to miss out on the good in it out of fear of the awkward. 

At the end of the presentation, Lukert asked us if our minds had changed at all or if we might have a different reaction when that phone rings someday. She suggests this:  “I will be with you, whatever comes. We are in this together.” 

                                       {photo: my sweet father shortly after his diagnosis}

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