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The Hardest Thing

by Ginnie Horst Burkholder

During my 15 years of caregiving I have often heard myself say, “The hardest thing is…” But each time I would say it, there would be a different ending. I would hear myself and think, well, what is the hardest thing? I could never decide.

Recently I thought the hardest thing was the realization that while so much attention has been focused on Nelson’s need and my survival, the years went by and I found that I’ve grown old. My hair is now nearly all white. My body lags far behind my intentions, and it protests at tasks that were once effortless. Now I am finding the things I’m capable of doing are falling away at an alarming speed. It’s easy to think that there is little to look forward to.

Watching a spouse grow down

I have a long list of items that, at one time or another, I’ve said were the hardest things. Communication with a spouse who has dementia is hard from the beginning and gets progressively harder. Being parent-like to a spouse is hard. It involves making decisions for them that they want to make themselves, such as the decision to stop driving. And this surrendering is wrenching for both partners. Watching a spouse grow down until their skills are equivalent to a grandchild’s is hard. Taking on all the planning and managing the lives of two people is hard. In the beginning, starting a whole new life style where you are no longer equally functioning as a couple is hard on the social life and relationships. Living in the constant flux of Lewy body vacillation is hard. Watching a spouse’s personality disappear under Lewy body’s hijackings is hard. The loneliness of your commitment to a person with dementia is hard. The list just goes on and on.

But there is one thing, I believe, that trumps and perhaps includes all of the above. It is the grieving. With each hard thing that comes along a caregiving spouse has losses to grieve. And as the years go by, each loss gets bigger and has to be grieved over and over again.

Harold Ivan Smith says, “The goal of wise grief is not to ‘get over’ or ‘move on.’ The goal is to learn from the experience. The goal is to integrate the experience into the fabric of our story. The goal is to live although grieving.”

The hardest thing is to live for 5 or 10 or 15 years, all the while grieving. I once met a couple about my age whose only children were their two adult sons – both severely disabled and in wheelchairs. The parents had cared for them since they were born. We had an instant connection. It wasn’t because I can even imagine what it is like to be in their shoes. It was because we both live in a grief that is suspended in time with reminders that never go away. It is harder, I believe, than grieving a death.

Most people pass in and out of painful experiences and may even grieve a long time because of them. But at some point, there is usually the potential to begin to focus away from the loss and start putting energy and life into other hopeful experiences. When the reminders of your grief are ongoing and living themselves out in front of you daily, you remain in a sustained grief that wears away your resilience.

Grieving and mourning

What does living while grieving look like? A grief specialist once explained that grief is how we feel about a loss. Mourning is how we express what we feel. Everyone grieves. Not everyone mourns. To heal we must mourn, she said.

So if the goal of wise grief is to live while mourning it means giving time and place for the expression of shock, sadness, anger, frustration, and fear – all elements of grieving. It means journaling, crying, raging, keening, talking to a good listener, praying, and doing what ever it takes to express the grief.

In recent years I have tried to find someone to counsel me whose expertise lay in grieving without the finality of death. There seems to be no such person out there. The literature I have on grieving assumes death. Dr. J. William Worden gives the final task of grieving as follows: “Withdraw emotional energy invested in the deceased and invest it in new relationships.” That pretty much leaves us caregivers hanging if we are still committed to the relationship with our spouse.

How to move on

It seems that for spousal caregivers who are faced daily with their losses, mourning is part of the job. For us mourning is a critical part of living. We live. We give care. We love. We laugh if we can, and we must mourn. That is the hardest thing – the growing loss, the incessant grief, and the mourning that by necessity is an ongoing part of our experience.

© 2010 Ginnie Horst Burkholder

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