Alzheimer's: When the Caregiving Is Over

Jan 12, 2012
Christine Jarvis

when the caregiving is over - Image in public domain

A mother's death may be the first sorrow wept without her. For family caregivers of parents with dementia, a greater challenge is still to come.

Whether you are son or daughter, whether you care for mother or father, eventually the caregiving ends. Family caregivers of a parent with dementia experience a range of emotions from profound loss to relief when a loved one dies. Many of us start our grieving when a diagnosis is first made. We lose more pieces of our heart as we go along. We are finally swept into a black hole of final loss whe the funeral is over, the mourners have all gone home, and we are left alone with a question we have no immediate answer for:

Now what?

First, You Grieve

Loss always results in a deprivation of some kind, and grief is a normal reaction to loss. Most grief experts (counselors, psychiatrists, psychologists) view grief as a process, and advise that for the individual going through the process, it takes as long as it takes.

For those newly bereaved, my article "Grief: First Steps Forward" offers some gentle layman's suggestions.

Erich Lindemann called the process grief work, and likened it to any job we must do, one that requires effort on the part of the one who is grieving.

Therese Rando describes three tasks the griever must accomplish in order to see daylight at the end of the grief tunnel: emancipation from the bondage of the deceased, readjustment to the environment in which the deceased is missing and formation of new relationships.

The term bondage is not used negatively, not used to describe some form of enslavement. Rather, it refers to the healthy but heavy emotional bond between caregiver and the one cared for during life. It is a positive term, but the bond changes as a result of the death of the loved one. The caregiver must then adapt, possibly financially and socially, certainly emotionally and physically, to a world without the one who is gone. Finally, when time, love and energy are no longer invested in the departed, when the survivor's role as caregiver is no more, the caregiver must begin to form new relationships. Relationships, Rando says, both with someone or something else, and also with the loved one now gone.

Gone, Not Forgotten and That's OK

It is this third task—formation of new relationships—that gives me, once a caregiver, both the greatest reassurance and the greatest challenge. I am reassured by Rando's validation of what I feel as my own continuing relationship with my mother, although my mother died of complications associated with Alzheimer's disease over a year ago.

While I acknowledge the fact of Jannie no longer physically being with me, I also view as fact that she is still here in other ways. There is her lovely embroidery, a few pieces of inexpensive but to me priceless jewellery, the scent of her perfume on a scarf, words she once said, and memories of our time together that forever will link us. (Never mind all the expert advice on getting your children to eat—Mom got us to eat our veggies with "Eat what's on your plate and I won't give you any more.")

Two Tasks Down, One to Go

Rando says "the emotional energy that is withdrawn from the previous relationship has to be reinvested in someone or something else."

This, I think, is the challenge for family caregivers, especially for those of us who have no immediately identifiable someone in whom, or something in which, to invest.

Yes, we first need a good rest. If we did our caregiver jobs right, we are spent, emotionally, physically, and—if you are like me, financially. We need time to cry and time to breathe. Through a three-year Alzheimer's journey, I lived by a Dutch motto (translated): Don't tell me how rocky the sea is, just bring in the ship.

It was a rough voyage, as anyone touched by Alzheimer's would know. Sailing as second mate, then when circumstances decreed, as captain, I brought the ship into home port in September 2010, when my mother died and the caregiving was over.

Now I am on task three. Rando calls it reinvesting emotional energy into something else. I call it re-rigging for the next part of the voyage. It's not the easiest of the three tasks.

From Where I Stand

I see a vast expanse of uncharted waters and uncertain winds ahead. What is to be done with those who once were caregivers, and who now can never settle for less than total commitment of their hearts and hands to the next challenge?

I, for one, have a whole new skill set. I can strip and re-dress a bed with fresh linens and tuck a Mom in again in mere minutes. I combined a full-time office job with ensuring 24/7 in-home care for a Mom with Alzheimer's, and did it on three hours of sleep or less every night. I have a well of compassion that will never run dry. So, who now needs what I have to offer?

I don't have an answer yet. I do think the question must be asked, a dialogue must be opened, on behalf of all those for whom the caregiving is over:

Now what?