By Brenda Avadian, MA
The Caregiver's Voice
Over the past two decades, the one question professionals ask after one of my presentations, is, “How can we get families to ask for help before it's too late?”
“You can't,” I reply.
[momentary silence] “What?”
Of course, you’d expect a consulting professional to say, “Great question! It’s as easy as 1-2-3!” But that would be a lie.
Years ago, it was almost impossible to find families dealing with dementia who would agree to come forward. Back then, the stigma was so great, families endured quietly until they could no longer. Family caregivers would come up after my keynotes to get their books signed. They’d lean in, so no one else could hear. In a barely audible whisper, they’d tell me about their family’s caregiving struggles with Mom, Dad, an aunt or uncle.
Twenty years later, much has changed. While pockets of stigma remain, there is a greater awareness among professionals and family caregivers. Thanks to research enabling people to be diagnosed earlier, many can still speak for themselves. The Caregiver’s Voice features people with dementia in the VOICES with Dementia column. There’s a two-fold benefit. One, caregivers and family members can interact directly with the care recipient in a meaningful way. Two, it’s hard to stigmatize someone you’re conversing with face-to-face.
Even family members feel better about opening up. Some eagerly share their experiences helping raise awareness and knowledge of what to expect. In fact, over the last 20 years, hundreds have written books while thousands convey their experiences online in blogs, videos and via social media such as Facebook.
Raising awareness while reducing stigma helps families better see Mom or Dad’s situation. Instead of postponing involvement, due to ignorance or denial, family members are able to step in earlier to help where needed.
The youngest child of three, I shared a birthday with my father. Being the first to leave home, I returned 19 years later. Unlike some children who dive in and take control, I held back to preserve his independence. I didn’t want to meddle in my father’s private affairs. Was I in denial? Even in hindsight, I don’t think so; besides, I had no clue what dementia meant. My ignorance prevented me from recognizing the seriousness of what my father was facing.
When the County Department on Aging called to say, “Something must be done for your father. If no one from your family steps in, we’ll have to order a safety check,” my attention piqued. On a cold-winter night in Wisconsin, I watched my father tuck a space heater under the heavy blanket. He wanted to warm his bed before turning in for the night. During another visit, I smelled a musty odor in the basement. I faintly recalled the same odor during a previous visit. Instead of humidity due to doing a load of wash (he hadn’t washed or changed his clothes in six months), the musty odor turned out to be a massive gas leak. Five men from the Wisconsin Gas Company tore up the front yard to repair the leak in the gas line. If this wasn’t enough, I learned that he had not paid his house insurance. To think, he and his home of 45 years, built with quality and imported materials by a prominent banker during the 1930s, could have blown up in a massive fireball.
It would be a miracle if the safety check found him able to live independently. Instead, they’d order a 72-hour psychiatric evaluation. Being removed from his home involuntarily would kill him.
I returned to my childhood home armed with four options for my father’s care. Have someone care for him in his home. Move him into assisted living where my husband’s grandmother also lived. Visit him and then return home. Move him across country into our California home.
If it weren’t for the case worker, who tried once more to reach another member of our family… if, instead, she threatened immediate removal or refused to help as I navigated this uncertain terrain, alone; I would have never had the opportunity to share the last five years of my father’s life.
My point is this: despite a willingness to help, I might be guilty of a subconscious denial about confronting my father. And that’s OK! Yes, we’ve come a long way in terms of awareness, education and resources for individuals and families faced with a need for assistance, but we’re still human.
Be patient with families facing a crisis.
Continue building awareness in the community you serve.
Offer support options and resources.
Equip families to feel comfortable about asking for help before it’s too late. You’ll play a memorable role in reducing their potential feelings of guilt and even a lifetime of regret.
Any kind of caregiving is going to require coordinating with other people and entities, such as doctors, therapists, insurance, maybe other family members or non-medical caregivers. This is called coordinated care.
We have created a library of support for family caregivers who may find themselves overwhelmed or confused as the symptoms of Alzheimer's disease.
Caregiving and relationship expert, Barry J. Jacobs, has a new book that focuses on marriage for people a couple of decades into their matrimonial journey.