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
http://earlyonset.blogspot.com
2 comments:
My husband is a care receiver and he can be lonely also. Almost three years ago we forged a friendship with a couple I call "Sally and Jake" on my blog. We four love doing things together. Jake doesn't know/accept that he has Alzheimer's, but my husband knows he has it and that Jake has it also. The two men are so funny together. They have this fantasy that they have known each other for many, many years. Hubby and Jake talk about an airplane trip they both went on where Jake drove the plane--Sally and I just smile because we know this outing never happened. Hubby always wants to know when we are going to see Jake and Sally. Tonight we are going to hear a Christian commedienne with them. The four of us will celebrate my birthday together next week. Sometimes the hubbies do something together such as their Tuesday Senior Center day while Sally and I have something else to do. Sadly this friendship will change as Jake's disease is accelerating, but my friendship with Sally and Jake will continue through all the stages of the disease.
I saw a friendship like that develop in our support group. The husbands both had Alzheimer's and seemed to really enjoy each other's company.
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