Over 25 years ago Anita Curl, MSN, RN, CS wrote an article for Geriatric Nursing magazine on the subject of family grief when dealing with a loved one with Alzheimer’s. I’m aware of it all these years later because first, I’m a student of this insidious disease and the toll it takes on caregivers and secondly, the information is as relevant today as it was over two decades ago.
In her article she references Elizabeth Kubler-Ross and her book “On Death and Dying.” Specifically, she shares her five stages of facing death. Considering that those with Alzheimer’s experience a personality death long before a physical death it’s easy for a caregiver to be hopeful death won’t be far off but then still hope that it doesn’t happen. One of the important things that Curl points out is the impact of what she calls “anticipatory death.” You know it’s coming and you just don’t know when. The result can be an “emotional roller coaster ride for caregivers.” As I review the five stages, let’s see where you or someone you know might be in the grieving process.
DENIAL: I’ve witnessed this first hand many times. The daughter that refused to believe that her mother had dementia even though she didn’t remember her children or any of their names. Or the wife that wouldn’t accept the fact that her husband had Alzheimer’s even though he didn’t remember being at his daughters wedding the week before or how old he was even though I told him 3 times in 10 minutes.
ANGER: One daughter told me they would move their mother out of our Assisted Living community before they’d transition her to the dedicated community she so desperately needed. Who did she think she’d be hurting? They’ll get mad at the Doctor, God, me, other family members and even the poor soul with Alzheimer’s.
BARGAINING: This is when the well meaning caregiver becomes a student of the illness and begins to look for ways to reverse or postpone the inevitable. They’ll cull through catalogues that promise that if you “take this or that” you’re hearing will get better, your eyesight will improve, your bones will get stronger and your memory will improve. At this writing, there is no vitamin or supplement on the market that has been proven to improve the memory of someone with Alzheimer’s.
DEPRESSION: Not surprisingly, depression is the most frequently reported problem of caregivers. It’s the result of the caregiver realizing that the loss of their loved one is inevitable. Inevitable in spite of the fact that the caregiver has worked tirelessly in hopes of trying to maintain things. Many caregivers have isolated themselves socially, they may have their own medical issues they’re dealing with, they’ve done nothing for themselves recreationally and it hasn’t helped or changed anything.
ACCEPTANCE: The loved one being cared for with Alzheimer’s is certainly not the person they once were especially as the disease advances. That Physics Professor can’t count to 10, that pilot can’t navigate to the men’s room and the woman that ran her own company for 52 years now has no recollection of it at all and never will. That is the illness we are dealing with. Not surprisingly those caregivers that are new to the world of caregiving aren’t all that willing to move quickly into the “acceptance stage.” Once they’ve been at it for a few years they develop a much better understanding of those other families that are comfortable facing the inevitable.
I knew a gentleman that told me once that he believed “where there was life there was hope.” His frail, elderly and very ill wife had been in a nursing home bed for over two years. I guess you could say he was a true “glass half full kind of guy.” The difference is, he wasn’t dealing with an illness that’s referred to as “the never ending funeral.”
Questions, contact me at repe@careforcare.yabanjin.com. Remember, Join the Journey.