Before I even knew Sarah Harris, her words in the national Alzheimer’s newsletter resonated with me. When she spoke at the candlelight vigil many years ago, she said, “Alzheimer’s is a lonely disease.”
Dementia disrupts personal relationships in a way that few other diseases do. As a caregiver, you will miss the give and take of your relationship with your loved one. Jim developed aphasia early on in the disease. He changed from a man who laughed and joked and shared his deepest thoughts with me to one who seldom spoke a word. He once could play any instruments with strings, but gradually he struggled to play his guitar. Jim had known the lyrics to several hundred songs, but eventually, he would only attempt a few songs and often sang only the chorus over and over. I missed meaningful communication with my husband. Our relationship gradually evolved and each transition increased the loneliness.
Another factor of loneliness is that some friends back away, especially when those friendships involve another couple. Activities are no longer the equal friendships from before and your loved one cannot participate at the same level. Other friends may simply not know what to say or how to react to odd behavior. You will learn to rely on the ones who take the changes in stride and continue to support you in your changing roles. Eating out can be a real challenge. Once, we went out to eat at a nice restaurant with our friends Rick and Robby. We all know how cold restaurants can be, and with Jim on blood thinners, he began to shiver uncontrollably. Robby went to their car and got a blanket that she wrapped around Jim. After our meal came, we discovered that the fish Jim ordered had bones in it. Noticing that it looked like Jim didn’t remember how to remove the bones, his old fishing buddy, Rick, took a steak knife and filleted the fish leaving him only the boneless portion to eat.
Spending time with trusted friends or family who make your loved one feel part of the group is a good way to combat loneliness. These special people can lend some normalcy to a world that at many times seems anything but normal.
We often socialize with friends based on an activity that we have in common. Whether you play golf, play cards, ride motorcycles, or have backyard barbecues, a loss of skill may make continuing as a couple impossible, or dangerous. Your loved one may also become uneasy in crowds or a different environment causing him distress and anxiety for you. People who are more casual acquaintances, may not realize the activity is no longer appropriate for your loved one. It may be simpler to turn down invitations, increasing the gap between you and your friends.
To keep from being left out of all the fun, you can plan a get-together with a small group where your loved one is more comfortable. Or, you may want to find someone to stay with your loved one so that you can enjoy an outing. You don’t want to isolate yourself from people who can support you and offer you companionship.
Widen your circle of friends by joining a club, volunteering, or attending charity events. Being a part of these groups will not only help you find new friends, but it can also keep you busy while making a worthwhile contribution to your community.
I found the best way to battle loneliness was to be comfortable with being alone. After the tough decision to place Jim in a nursing home, I returned to school to earn my bachelor’s degree. Working full time and studying for my classes didn’t leave much time to feel sorry for myself or to feel lonely. One of the better decisions I made was to join a local business women’s group. Our town is small, but our local is the largest Business Women of Missouri club. I’ve made friends with women throughout Missouri that I would never have known otherwise. I also joined two writers’ guilds. I gained a new group of friends where I found encouragement, support, and learned invaluable information to build on my desire to write. Whatever your interests, you can combat loneliness by taking a chance on joining with like-minded people.
Yes, Alzheimer’s is a lonely disease, but keeping active is your best defense. Don’t be afraid to leave your comfort zone, especially when you are feeling sad and alone. After all, loneliness is an emotional response to isolation, so surround yourself with friends and family who uplift you and fill your need for interaction with others through the giving and receiving of friendship.
Copyright June 2013 by L.S. Fisher