Moving On, What Else Can I Do For You?
Memory Club formed in 2018, owing to dire circumstances: half the members are newly-christened "caregivers," spouses to people with Dementia. We're from diverse walks of life, a reminder Dementia strikes randomly. It could be anyone out there walking around, but today it is these people around the table, depressed, scared shitless, uninformed. He or She doesn't "have" Dementia. We are living with Dementia. We have no option.
Betty lost Rich last week, the first of us sitting in that room, four years ago.
Newly diagnosed with a Dementia, six couples come together under auspices of Pasadena's Huntington Hospital, USC, and The Alzheimer's Association. We meet weekly to hear brain researchers, financial advisors, purveyors of hope. An hour with the specialist, then we caregivers meet with social workers to unravel thoughts, clarify expectations, and come together with others with profoundly disabled spouses. We are being initiated gently into an exclusive new career, no probationary period, no salary. Work until the work ends.
Write a Final Directive, how and who makes decisions when you no longer have speech or cognition? In other words, are you DNR, Do Not Resuscitate? Put your papers in an obvious location.Get your money together, care is out-of-pocket hundreds of dollars a day. Scour your resources for help, you need people to help you. Finding people to help you will be difficult.
A psychologist trains brains to remember how to do stuff mechanically through haptic cues and similar methods; she hopes it can help some of us at great expense, we learn. We're the kind of people with good insurance. Senior Centers offer low-cost memory training programs, good socialization if nothing else.
Alzheimer's is only one variety of dementia in our Memory Club, but we're all living with identical medical tragedy: progressive and terminal. Your spouse will die. We don't discuss what we do next?
We read and talk about those "progressions" of dementia exacting a terrible toll on a caregiver's life. We have little notion what "terrible toll" means, back in 2018. We lived our way through it, confirmed through experience what readings predicted. Betty's fulfilled her caregiver role and now Betty is free to live the rest of her life.
QEPD, Rich. His was a dementia the doctors didn't understand. Rich drove an SUV by himself, and with others--I rode with him and Betty to a concert. Rich performed Christian mitzvahs with disabled people, doing biblical exegesis. He challenged his memory and communication competencies despite that diagnosis. Doctors don't know what was happening to Rich's brain.
A famous brain researcher (link) outlines science's challenges for the Club. Researchers believe plaque causes dementias like Alzheimer's. Stop plaque and stop Alzheimer's. Post-mortem evidence offers problematic results. One brain is free of plaque yet the patient died with dementia. Another brain is filled with plaque yet the patient died of natural causes.
"What's our life expectancy?" a new caregiver asks the brain researcher. There are only guidelines, some patients get twenty years, some get 3. You get an average of seven years following diagnosis. Dementia tends to afflict older gente, making their final years hard, depriving people of almost every element of an elder's Personhood. The last time I spoke with the researcher he told me "We'll see a cure in our lifetimes."
Our friend Betty went through the process of dying: caregiving, behavioral changes, illness, severe illness, in-home hospice, nursing home palliative care, the phone call, "Hurry over, there's not much time," and everlasting gratitude for that final moment of peace with your life's companion.
Death is for the living. Funeral decisions, and expense; burial or cremation? Barbara and I will be cremated and the United States Army will put the ashes in Riverside National Cemetery, for free, because I'm a Veteran. I've heard of funerals costing above five thousand dollars. Cremation cost me $2000 in Pasadena when I sent my Mom's ashes to Riverside to be with my Dad.
Living. No caregiver is going to tell people their loved one burdens the caregiver. Dementia obligates, constrains, defines the caretaker's daily activities. Caring for dementia parallels what people say about language, the limits of a spouse's dementia are the limits of a caregiver's world.
Dying brings sudden, abrupt change. And Time to live out your life. That time, the release from obligation, is the gift that our loved ones hold for us as we reach the final stages of our shared-with-dementia lives.
Betty, you kept your promise, lived your Vows, "In sickness and in health all the days of our lives." Live your days satisfied you did what you could, you kept your promise. Time is yours.
We never found that answer, "Why me? Why Barbara? Why Rich?" It wasn't supposed to be like this, Life, and I wish it were different, but this is what happened, ever after, que no?
Sorrow and mourning are not absent from this time of transition. A long time ago, we grieved. Years ago, mourning consumed us, but mourning hardened into expectation. Grief turned back into Love.
Beautiful, elegant, profound, true.ReplyDelete
Thank you, Michael. What a beautifully written article. Bless you, my friend.ReplyDelete