When Katherine Autin’s husband was diagnosed with Parkinson’s in 2004, she didn’t know much about the disease except for what she had heard from stars like Michael J. Fox and Muhammad Ali. Faced with this mysterious and complicated disease, Katherine began to learn as much as she could for her husband. After years of study and hands-on experience, Katherine founded Parkinson Partners LLC in 2012, which works as a patient advocate and educator to help individuals and families learn what to expect as the disease progresses. She understands both professionally and personally how difficult it can be to watch a loved one suffer the symptoms and complications of Parkinson’s. “That’s where I feel my strength is. I have seen how all this comes together, and I want to help others through the process,” Katherine says.
Visiting a friend or loved one at home or a facility can be intimidating; we may worry that we will say or do something wrong. It’s hard to watch those we love struggle. Although we want to stay in touch, we can be afraid to visit simply because we don’t know what to expect. “Focus on what you already know about the person and what he or she enjoys,” Katherine says. She has a list of specific suggestions for how to make a visit meaningful:
Watch movies together
Not only is a good movie a treat, it can be a very normalizing activity. The individual likely misses the chance to spend time with friends as he or she has done in the past. Sharing a movie can also be a good idea when conversation is a difficulty.
Work on simple art projects
Activities like finger-painting and coloring are fun and good for dexterity. The individual can take part even if confined to a bed or wheelchair. Katherine suggests Theraputty, a substance similar to playdough that comes in different colors based on the amount of strength it takes to manipulate it.
Share a favorite read
Consider reading to your friend or listening to an audio book. If the person doesn’t hear well, bring in magazines, crosswords, or books that can be enjoyed later.
Offer a helping hand
We all want to help our loved ones, but Katherine reminds us to respect that person’s dignity. “Let them do what they can by themselves. If they’re struggling, ask gently if they need help,” she says. Perhaps you can work on a light chore together or talk through a task that can be done at a later time. Try not to take control over how the job is done.
Bond over a sweet treat
Enjoying a favorite food together can make a visit very special. “We all love comfort food,” Katherine says, “but always check first. Dietary restrictions are very common, so we can’t assume beloved foods are still safe to eat.”
Sing...and maybe even dance
Music brings us all together, and it can certainly fill the silence when conversation may be difficult or impossible. Singing old songs together is a lot of fun, and if it’s safe to do so, you may want to dance. Even if the person is confined to a bed or wheelchair, he can still move to the beat!
Celebrate the good old days
It’s fun to think back on happy times with family and friends. If you find old photos, documents, home movies, toys or collectibles, bring them in to share some fond memories. The simplest of things can bring a smile. “I brought in a balloon one day to bat around with a friend. We laughed the whole time we played with it,” Katherine says.
Katherine also suggests having a white-board on hand for friends who are hearing-impaired. You can still “talk” about the old days with a written conversation.
Bring in kids and pets
If your friend enjoys kids and pets, those visits can be very special. Keep the visit short; however, because high energy visitors can tire your friend more quickly than you realize.
Pamper the body and spirit
Ask your loved one if he or she would like their nails trimmed or painted. Lotion is also wonderfully soothing to dry skin.
Keep it simple
It’s not always necessary to have an activity to do. Simply talking or sitting in companionable silence can be very meaningful. Katherine focuses on one main objective with her husband and clients: “I try to get a smile or a laugh. It’s good for the health and for the spirit.”
This article and other tips for caregivers appears in the summer issue of Today's Transitions.
Photo by Melissa Donald
Good article! Thank you!!!
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