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Carol Bradley Bursack, Published May 03 2014

Minding our Elders: Younger spouses can feel left out of caregiving advice

DEAR CAROL: My husband and I are in our late forties. Unfortunately, he has younger onset Alzheimer’s disease. I’m just writing to say publicly that I feel left out of a lot of caregiving advice. Most caregiving articles are written for adult children. I know a lot of information can apply to nearly any Alzheimer’s caregiver, but there seems to be a belief that everyone with this disease is an “elder.” I know that I’m not the only one coping with this, but with teenagers in the house and a spouse who is needy and difficult, I wanted to speak up for others like me. – Jill

DEAR JILL: I understand what you are saying. In fact, I’ve heard the same complaint a number of times and am not unsympathetic to what you’ve said. Younger spousal caregivers do need more articles addressed specifically to them as do spouses in general.

That being said, most writers on caregiving, including myself, strive to address the largest appropriate audience. In the case of Alzheimer’s that audience tends to be elders and their adult children.

The issue here is practicality. If a writer tries to cover all of the bases in every article, readers can get lost in a maze of “he or she” and “adult child and/or spouse” laden sentences and the message may be diluted. For that reason, writers often write for the broadest audience possible, hoping that others will also be able to take something from the message. I’ve written articles specifically for younger spouses, older spouses, grandchildren and others who care for people with dementia, but it’s true that the bulk of my own articles are directed toward adult child caregivers.

Even though I’ve cared for multiple elders, I do advocate for support groups that focus on specific groups of caregivers and others affected by Alzheimer’s or other diseases. For example, I’m an honorary board member of the Well Spouse Association. The WSA, found at www.wellspouse.org, is a support group for spousal caregivers of all ages and could be very helpful to you.

Also, both the Alzheimer’s Association at www.alz.org and the Alzheimer’s Foundation of America at www.alzfdn.org offer specific support for younger caregivers. Additionally, they offer help to teenagers of those with Alzheimer’s disease, which is vital since these young people often have home situations that are unusual among their peers. Your community may have in-person support through your local Alzheimer’s organization, Area Agency on Aging or other caregiver resource groups.

You carry a special type of pain, Jill. Your husband has developed a devastating disease at an age when he was likely at his peak in individual work productivity and as a contributor to the home environment. You were life partners and now you are suddenly his caregiver. Under the circumstances, it’s only natural to feel left out. I hope that you can find suitable support through the organizations mentioned above and that you make friends who are in a similar situation. You’ve already helped many by writing your letter and bringing increased awareness to this ongoing need for support of younger spousal caregivers. We who write about caregiving are with you all the way and will continue to try to address your issues along with those of adult child caregivers and other specific groups.

Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com. She can be reached at carolbursack@msn.com.