Dear Readers,

Last year I had the opportunity to hear Roger and Susan Adams* speak about Roger’s “young-onset” Alzheimer’s disease. After a diagnosis in his mid-forties, Roger left his job in a major corporation when he could no longer keep up with his daily responsibilities. Susan, a working mother with a high-school age son and daughter spoke movingly about their life together. Roger spoke about the diagnosis as the “darkest time in their lives,” describing how for months they would sit and hold each other and cry.

Roger’s life, formerly one of juggling multiple family and corporate responsibilities, changed (some would say diminished). The Adams have finally accepted the reality of what has happened, learning to take life one day at a time. They are getting help and indeed have made a significant contribution through Roger’s role as spokesperson for the disease, but they are also attempting to balance their time together while they plan for the support that will certainly be necessary in the future.

Behind the scenes are the Adams’ children. What is the effect of Roger’s AD on them? Soon they will be young adults dealing with a parent with young-onset Alzheimer’s, a situation that sets up a difficult conflict between their own maturation and the obligation to care for a parent with a progressive illness. How many young adults in their 20s and 30s are sacrificing some portion of their future to care for a parent or spouse with Alzheimer’s disease? We don’t know for sure, but we know the number is growing.

Some in the field talk about the “Gift of Alzheimer’s,” “The Joy of Dementia” or “The Brighter Side of Alzheimer’s” (this author quickly changed her mind, after her mother entered the late-stage of the disease). What these well-meaning writers are referring to is the life lesson we take away from either having AD or caring for someone who does. Their message is that dementia brings the “gifts” of accepting each other for who we are now, of being present, of staying in the moment. Given the burden on the families of those with young-onset Alzheimer’s, we would agree that these are valuable lessons, but are they “gifts”? I don’t think there is one person who has AD or a family caregiver who wouldn’t run to exchange this unwanted “gift” for an immediate refund of their formerly cognitively intact relative. Some might even be offended by the term, thinking it too glib — not reflecting their experience of profound loss and grief.

One of the challenges of dementia is how to balance the need to care respectfully and thoughtfully for the person who is ill and still respect the caregiver’s right to mourn the progressive changes and losses that accompany the disease.

The Adams children are entering their first year of college. I wonder if they have lost the opportunity to share this time of transition with their Dad. Would they consider this a “gift”? What would they give to get their Dad back? Are they scared for their own futures and that of their children? We hope they, and everyone who needs our help, reaches out to us by calling our 24-hour Helpline at 800-272-3900 or on our website.

I wish you a healthy and happy holiday season and all good things in the New Year.

*Please note: Names have been changed to protect the privacy of the individuals.

— Jed Levine
Executive Vice President,
Director of Programs & Services

Previous | Next