Times and treatments have changed greatly since my grandmother was diagnosed with Alzheimer’s disease twenty years ago. It’s inspiring to know that early diagnosis gives people much more opportunity to decide how to deal with the consequences of this devastating disease, and that many choose to keep living life to its fullest.
Today I came across two stories that illustrate the power of that choice. Both Pat Summitt and Glen Campbell have provided our country with inspiration and leadership in the very different venues of women’s college basketball and popular music. Both have made strategic decisions about how to keep doing the work they love. In Summitt’s case, that will mean relying more on the coaching staff she’s developed over the past twenty years. Campbell plans to keep performing to support his new album. His wife explicitly told People that they were sharing the news about his diagnosis so that fans would be understanding if he flubs a lyric.
Families of Alzheimer’s patients have much more support and care options today, and it helps to have a roadmap about what to do once a diagnosis is obtained. Yet these tools only go so far when loved ones face the emotional reality that Alzheimer’s means saying goodbye twice and still being forgotten. A person with Alzheimer’s may look like themselves, but their behavior often changes drastically over time, their memories regress, and their sense of reality changes. They start looking for people who have been dead a long time and thinking that they are living in a different decade. For my family, this was the first farewell, the realization that Grandma was no longer aware of us as her children and grandchildren.We had funny moments with her too, and there can be a sweetness in being around someone who is reliving their childhood. She remained charming and conversational, if confused, for quite some time before her dementia and frustration level escalated. Then she needed full time professional care and we were fortunate to find a nursing home with a new wing built especially for patients like her. The second farewell was when she died and we actually buried her. Of course we were relieved that her suffering was over but there was also great sadness about all the years the disease stole her from us.
There are drugs that delay the onset of symptoms, improvements in palliative care and better caregiver support networks now but one fact remains the same:
There is no cure
for Alzheimer’s disease.
Consider joining a Walk to End Alzheimer’s in your area to change that and support families coping with this disease. Let’s make Alzheimer’s a forgotten condition of the past.