When something bad happens to us, it just plain sucks. Whatever it is, we don’t want it happening. We want it to go away. But realistically, in order to address the situation, we have to acknowledge the bad thing that’s happening. We have to face it. At least I do.
I’m not one to say, “I’ll cross that bridge when I come to it.” To me, that’s the same as sticking my head in the sand. While I try to stay mindful and present, not facing a dilemma, especially one as huge as dementia, and figuring out my next move is allowing the situation and time to ultimately make the decision for me.
Last Fall I took a two-hour seminar for caregivers coping with dementia. The program was delivered by the local Alzheimer’s Association. After the class was over, the facilitator told me she was glad I attended. “You’re way ahead of the curve. Most people wait for a crisis before making plans or arrangements.”
Most of the people in attendance were caregiving a parent with dementia. A couple of caregivers voiced frustration with siblings in denial of the disease, making it difficult for the caregiver to create an action plan for the future. Denial is most often based in fear. Fear that they will get the disease. Fear that they will have to put their loved one in a nursing home. Fear that their loved one will forget who they are. The person in denial doesn’t want to take any action as if they can freeze time.
But, we can’t freeze time. Accepting the diagnosis is realistic. It is what it is. A dementia diagnosis is tough. Denying the reality of the diagnosis makes it even tougher on everyone involved. Especially on the caregiver who desperately needs support of all kinds. Denial delays important decisions to be made. Worse yet, it puts the dementia patient and the caregiver at risk.
The person in denial actually creates more stress for an already burdened caregiver. According to an article by Carole B. Larkin “Denial Is Dangerous In Dementia Care” at http://www.alzheimersreadingroom.com “denial causes stress to the caregiver — even to the point of a serious heart attack, stroke or other fatal event.”
Denial also prevents the family from getting out ahead of the curve that I have apparently already rounded. Aside from addressing the specific wishes of the patient while they are still cognizant, denial hampers decisions regarding legalities such as powers of attorney, wills, living wills, healthcare directives, ongoing home care versus assisted living choices, when is it no longer safe to drive and more.
For me, knowledge has always been power. Power to understand what I am up against. Power to make informed decisions. Power to prepare a plan. Power to stop worrying so much about what is coming. Power to enjoy today because I did whatever I could do now about tomorrow.
I can only rely on research, doctors and others’ experience to glimpse what is coming. I try not to let my imagination run away with my mind. There is comfort in knowing I am doing what I can to prepare. Because of that knowing I feel sorrow for the caregivers tethered to relatives steeped in denial. When the crisis comes, it will most likely be the already stressed caregiver who makes hasty arrangements along with hasty decisions. The relatives who live in a world of denial are apt to continue living in that world. Realism is not their strong point.
If I were to put myself in the position of the caregiver with relatives in denial, I would seek legal counsel. I would look for a way around the deniers in the best interest of my loved one. I would become an advocate who makes as many arrangements as possible now. I recognize taking this course of action is what family discord is often made of, but the caregiver’s obligation is to the one who needs care as well as caring for themselves. This is a case for putting your own oxygen mask on first — otherwise you can’t help the other passengers.
Facing a dementia diagnosis and taking appropriate action to protect your loved one and yourself is not being mean or nasty. It is being realistic. And, dementia is a disease in need of realism.