My brother Donnie’s memorial service Friday was a reflection of his life and provided closure for our family. Our family pulled together to plan a tribute that combined displays of personal items and pictures with personal stories, often humorous.
Donnie had suffered from multiple strokes brought on by diabetes. Donnie had been in a nursing home for four years. During that time, his quality of life degenerated. He was often cantankerous and always hard to understand. The strokes had affected his speech and it was common to have to guess what he was saying—often wrong—or to ask him to repeat himself.
Although a different cause, in many ways, Donnie reminded me so much of Jim’s dementia journey. They both became dependent on others to take care of them as their conditions worsened. Donnie and Jim both had mothers who remained committed to caring for them. My mother-in-law didn’t miss many days looking after Jim, and my mother not only looked after Donnie, but also moved to town so that she was within a few blocks away from the nursing home.
A serious illness is hard on the entire family, but nothing can compare to a mother’s heartbreak of watching a child, no matter how old, develop a terminal condition. It just isn’t in the natural order of life for parents to outlive children. From the time a child is born, parents see that child as their legacy and someone they can love and cherish for the remainder of their lives.
Whether a loved one has Alzheimer’s, strokes, diabetes, cancer, or hundreds of other conditions, the grief is ongoing for family members. When you see someone fighting for life, or accepting that death is the only outcome, the grieving process begins long before his or her final breath. Grief in these circumstances is ambiguous, without an end in sight. Throughout the course of the illness, there is no closure, and if your loved one is unhappy or in pain, that distress becomes a part of your every waking moment.
Family members and caregivers often feel guilty that they are able to enjoy many of the things their loved one can’t. Yet, complete happiness or enjoyment is illusive when always in the back of your mind is the thought that you need to provide a level of companionship and comfort for your loved one who is in the nursing home, hospital, or perhaps still at home.
If you are a primary caregiver, your loved one is on your mind when you wake up in the morning and the last thing that crosses your mind when you go to sleep at night. You are constantly second guessing yourself as to whether you have done everything possible to make life as comfortable and fulfilling as you can. You may have left your loved one in the care of professionals, but you know they have others to tend to and you are afraid that something will fall through the cracks.
I know that after Jim wasn’t able to feed himself, or even get a drink of water on his own, it was something I worried about constantly. It eased my mind to drop by the nursing home each night after work and on weekends to make sure he was okay. If I wasn’t able to go, I knew that other family members would check on him.
I know that my mom will now be at loose ends and find herself feeling like she is forgetting something as she goes through this transition from being a primary caregiver to leading an ordinary life. It will be months before life returns to normal.
Caregiving is an all-consuming condition that affects body, mind, and spirit. It is a labor of love that becomes a way of life.
Copyright © December 2012 by L.S. Fisher