Sunday, January 27, 2013

Being a Caregiver Isn’t What You Do, It Is Who You Are

In Memory of Jim

Being a caregiver to a loved one who has dementia isn’t a job that anyone wants, and yet 15 million Americans fill those unpaid positions. This army of caregivers is made up of various friends and relatives who battle the around-the-clock attention that a person with dementia requires.

The Alzheimer’s journey is a long and complex route. It begins with small lapses and glitches that can be overlooked or explained away. It is easy to be in denial that something major is going on, and you just tend to muddle through each day as it comes.

By the time, the symptoms become more obvious, you go through an entire battery of tests to rule out any diseases that can be treated. As in any diagnostic process, you will go through highs and lows. Some physicians will analyze the tests results and give you different answers. One might say, “It’s low blood sugar and as soon as you treat that, the symptoms will go away.” Another might say, “Get your affairs in order while you still can.” Throughout the early diagnostic process, the caregiver shares the anxiety, the fear, and the loss with a loved one. Later in the disease, the caregiver bears those anxieties alone.

When your loved one has Alzheimer’s or other related dementia, caregiving becomes an all- consuming responsibility. If your parent has Alzheimer’s, you find that your roles have reversed and you feel like the parent. If it is your spouse, you miss the special bond you had and find your love changing from a reciprocal relationship to one where you expect nothing in return.

Most people look at a caregiver and think he or she is a person who feeds, bathes, toilets, and watches over the person with dementia. They see the physical side of caregiving as the overwhelming responsibility. They see a caregiver who looks exhausted from the physical demands and lack of sleep. They may even understand the mental strain of trying to keep a loved one safe: taking car keys away from someone who has driven for many years or installing special locks or alarms to keep them from wandering away and getting lost.

What the outsider cannot see is the pain and stress that threatens to overwhelm the caregiver’s soul. They cannot see the inch-by-inch losses that make each day a new challenge. They cannot see the inner strength that keeps the caregiver going against all odds. By this point, the caregiver knows that there is no cure, no effective treatment, and no hope of survival for her loved one.

The outsider may wonder, why bother? It’s a losing battle. These are the same people who won’t go to visit because, “He doesn’t know who I am and won’t remember if I’ve been there.” Hogwash! People with dementia might not be able to say your name or even recognize you, but they know when someone cares enough to spend time with them, bring them a milkshake, give them a hug, or even make them laugh. No, they don’t need anyone visiting who is going to resent spending time with them or who upsets them. Someone who cares enough to learn how to communicate with a person who has dementia is always a welcome visitor.

After Jim’s disease progressed and I couldn’t provide the kind of care he needed at home, people used to ask if Jim knew who I was. Jim was silent the last few years of his life, so I wasn’t sure whether he remembered my name or that I was his wife. It actually became irrelevant. What he did know was that I came to see him every day and that I loved him. It wasn’t important that he remembered me, but that I, and the rest of our family, never forgot him.

Studies show that the hardest part of being a caregiver is grief. A caregiver’s grief is insidious, sneaking up and attacking unexpectedly. For a caregiver to remain healthy, he or she needs to find solace in the fact that the person with dementia is taken care of physically and showered with love.

Caregiving with love isn’t what you do, it is who you are. You owe it to yourself, and to your loved one, to keep the faith that live is good, but some of us have bumpier roads for our journey.

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Copyright © January 2013 by L.S. Fisher