ALS is not only a confusing disease for those of us who have
it, but it throws our well-meaning friends into a tizzy as well. Friends, who truly
want to show their love and support are stymied as to what to do, how
to act, or what to bring.
That’s because we’ve been guided by our past experiences
with other, more common, ailments. For example, when a friend is home sick with
a cold, we bring soup. Or, for someone recovering from surgery, we send cards and
flowers. If they are in hospice care, then we know it’s time to say our
goodbyes.
But announce to the world that you have ALS and most folks
are completely baffled about what is expected of them. Heck, at the time, I
didn’t even know how to answer their question, “What can I do to help?”
I remember those first few months. I received cards, flowers
and, yes, even offers of soup! Don’t get me wrong; all of that certainly was
welcome, and the soup was very tasty!
What is the answer?
Over the past few years, there have been studies looking at
what contributes to the quality of life for ALS patients, as well as what diminishes it. These studies found that feeling hopeful and having positive
coping strategies improves overall well-being. What reduced quality of life?
Feeling isolated, having little social interaction with others, and losing the
sense of meaning for one’s life.
If I could go back in time, here’s what I would tell my
friends when they asked that famous question, “What can I do to help?”
- Encourage
me to keep participating, interacting, and socializing with normal activities. Offer to pick me up, walk in with me, and sit next to me.
Provide the moral support I need at this vulnerable time.
- Brainstorm
with me for ways I can remain active in our group of friends while accommodating the changes happening to my physical abilities and my energy level.
- If I
begin to avoid going out or am home-bound, please keep me in the loop through emails filled with photos or videos. Keep in contact via FaceTime, Skype, or other video-chat channels.
- Try to
keep our relationship as normal as possible. Pull me out of dwelling on my illness by sharing funny stories or discussing our common interests and current events.
- I may
walk a little slower now, have speech issues, and do not eat the same foods
as before, but don’t let that prevent me from attending special events and
enjoying the company of others.
- And,
finally, keep my caregiver (spouse) in mind. If my care is intensifying,
offer to run errands, mail a package or pick up a take-out meal. Or maybe give the gift of time by offering to visit with me so he or she can get out and have some “me time” as well.
But all this help is a two-way street
So, I promise to:
- Be
open to your invitations. I may not feel emotionally up to it initially,
but I’ll go along anyway. I know that showing up and being among friends is the best thing to lift my mood and outlook.
- Let
you know when I need help and I will accept it when offered.
- Be
honest with you about my energy levels. I will discuss it openly and let you know when I need calm and rest, or when I’m able to join in and have fun together.
Let’s be the change. Let’s raise awareness of ALS. Let’s
help friends and family learn what they can do to help maintain the quality of
our lives.
Because I believe we CAN thrive ...with a
little help from our friends!
A version of this post first appeared as my
column on
the ALS News Today website.
Photo by Victoria Shes on Unsplash
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| Dagmar Munn ALS and Wellness Blogger |
"I get by with a little help from my friends"
I really appreciate this!
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