WHAT WE GAIN WHEN WE LOSE A LOVED ONE WITH DEMENTIA
Losing someone to a long term chronic illness can stretch families to the edge; you watch the gradual loss of capacity and at the same time take on increased responsibilities. It’s easier when the ill person handles their losses with grace and even humor; harder when they become angry and fight, frightened at the prospect of a life foreshortened. Family – the ones closest - are the recipient of that anger; after all, who else would stand for it. “Well", caregivers say, “at least they can tell you how they feel.” They may shout and get aggressive but those are moments, not a daily occurrence.
This is not the experience of people caring for someone with dementia who face the sustained frustration of being on an erratic roller coaster ride.
Some people with dementia seem to fade slowly, without anger or incident. Most fight to retain their essential selves - the important, self-defining parts that have begun to slip away. “That’s Harry, he has dementia.” And Harry might well wonder, “is that what people think? I was more than that, now dementia defines me?” It shouldn’t, but it often does. It’s a short-cut to describe how difficult the illness is to deal with. Often in the early stages of the illness families will note that “Harry” doesn’t react emotionally the way he used to – “he used to be compassionate, now he doesn’t care.” In fact, the ability to relate may be affected by the illness; not a wish to disconnect but a part of the brain that no longer process emotions or reactions. They need guidance to remember and caregivers need the tools to cope. This is not an illness for the faint of heart.
At a support group meeting the other night we honored 2 group members who lost someone they loved. One was a man whose wife of over 58 year became very agitated which he felt helpless to modify, finally died peacefully. The other from a son whose 90 plus year old father had re-entered his life 15 years earlier. His father came to rely on him and because of his son’s efforts, died with family at his side. This son finally felt the appreciation he’d missed for most of his adult life.
In the final days of a person’s life the question survivors often ask is, “what happens next, what about me?” I advocate mourning the loss and reclaiming the lives that got put to the side.
Some people find contentment in ways they never thought possible. Now the son whose father found him again, continues to visit and stays longer to talk to lonely souls and bring little treats. He transformed the grieving process by giving back in a way that keeps him connected to people…to his father, perhaps.
His story had an impact on the group. One woman cares for a stepfather with whom she was not close but visits him in a facility nearby and is also a long-distance caregiver to her mother in another state. She’s wanted to find a way to heal those difficult relationships, find solace, and hearing that story decided the best way to get what she wanted was to spend more time at her step-father’s facility, visiting people on his floor. She felt inspired to do a very simple thing. Visit. ”It feels right,” she said, nodding.
People want to be recognized for their hard work so talk about writing a book, being a support group leader or volunteering at a hospice. It’s hard to counsel against such wishes. I fear that they may re-injure their frayed fragile egos but nor can I interfere with their search.
I wish for people to remember who they are, as well as who they were and to honor both by finding purpose; a purpose now informed by loss but not necessarily guided by it. I want to say, “paint a bigger picture with bold strong colors; write the poem of love and connection; enjoy the freedom of having freedom.”
People who become visitors have a good idea and it’s something they have the time to do. They have experienced how relationships come round – what you give, you get back. It’s one way to heal from the sting of caring for someone with dementia who may have stopped remembering you or with whom you didn’t have a good relationship.
It might be just the right thing.