Caring for the caregiver

By Jim Cornelius, Editor in Chief, The Nugget Newspaper

Being a caregiver for a loved one dealing with a long-term, chronic health crisis is as tough a road to walk as any you could find. The burdens are acute — physically, emotionally and spiritually. And they’re cumulative. The pileup along a long and often dark road of a health crisis.

The Mayo Clinic identifies a syndrome of “caregiver strain.” Signs include:

• Feeling burdened or worrying all the time.

• Feeling tired often.

• Sleeping too much or not enough.

• Gaining or losing weight.

• Becoming easily irked or angry.

• Losing interest in activities you used to enjoy.

• Feeling sad.

• Having frequent headaches or other pains or health problems.

• Misusing alcohol or drugs, including prescription medicines.

• Missing your own medical appointments.

Because those burdens become part of the day-to-day, caregivers often aren’t fully aware of the toll the work is taking on them. 

“They oftentimes don’t know how to recognize it,” said Debbi McCune, one of the founders of Living Well With Dementia Sisters. “They don’t often know how to identify it, much less manage it.”

This is not a theoretical problem for McCune; she’s living it as the caregiver for her husband. 

A key element of Living Well With Dementia Sisters’ mission is helping care partners, as the group calls them, recognize what they are going through, and learn to care for themselves as well as their loved one.

“That’s a big chunk of what we do,” McCune said. "We recognize the challenges, and we’re here to provide guidance, hope and support for them.”

Living Well With Dementia Sisters hosts a support group each Wednesday at Sisters Senior Living. For information visit www.livingwellwithdementiasisters.com.

Kay Grady has been caring for her husband, David, since his diagnosis with Alzheimer’s Disease in 2017. She regularly participates in the support group, and is eager to share any aspect of her story that can help others. She advises people who are just starting out on their journey as a caregiver to talk with others.

Take all the opportunities that you can to hear from people who have walked the walk.

She strongly advises caregivers to develop a network of people in similar circumstances as early as possible. Such a network can help provide support and mutual respite coverage that can be prohibitively expensive if sought from a professional agency. 

Before moving to Sisters, Kay was a teacher and David was an Apple executive living in the Bay Area. They had a very active life together, and remembering that is important. She remembers a passion for cycling.

We did the (100-kilometer) Marin Metric; we did the whole Bay Bridge, the Golden Gate Bridge. We bicycled all the time. I try to remember that. We did have a life before this. Remembering that is one of the things that brings me the most relief or comfort.

One of the most difficult things to grapple with as the caregiver for a person with a long-term and ultimately terminal diagnosis is grieving the loss of a loved one before they are physically gone. There are feelings of guilt for wishing the ordeal was over, or for losing patience with someone who can’t help being slow or not remembering things. Sometimes the person being cared for can be ill-tempered or even mean — which is often not a choice but a symptom of their condition. Grady is very grateful that that is not her situation.

I am so fortunate. He is still kind. He is still loving.

Grady said that she has had to learn to not over-explain things, and to recognize that David is very repetitive. 

The couple always loved music, and David still enjoys going out to see live music in Sisters — which is a vital tonic for Kay. He can also still go to the movies. Once a week, Jeff Smith and Don Hedrick take David to Sisters Saloon for lunch.

It’s good for him to be with guys, I think.

She strives for patience, but she acknowledges that it can get to be a strain.

We’re not always nice. When you’ve had it, or heard the same thing 50 times in a day, then it’s time to put on music and dance around the living room.

She said her current go-to tunes are from a Sisters Folk Festival band, Fantastic Cat.

Kay seeks time to herself and connection with others.

I call our nieces and nephews, because I crave younger people.

She also craves connecting with friends who are able to carry on a full conversation.

Once very involved in the community, she continues to serve where she can.

I am serving on the Sisters Schools Foundation board, which keeps my finger in just a little bit. I so miss working with the mentorship program ASPIRE, and I would in a heartbeat be one of the Circle of Friends mentors.

She has had to give many things up. Travel to visit family; hikes on the Metolius; a night out with the girls. She knows she needs to access whatever she can for herself.

I’m interviewing someone to come and give me a break. A little freedom would be good.

Kay emphasizes small elements of self-care. 

I play all the New York Times word games and try to finish them all before I go to bed.

She once got advice to read or view something funny before going to sleep as a means of easing a troubled mind — so she hunts up amusing cat videos to share with her granddaughter.

So…silly things.

Those small or even silly things are a way of maintaining equilibrium on a long and trying journey with little respite and no prospect for improvement. It’s a hard road — but Sisters is rallying around its population of caregivers, and there is no shortage of advice and support for those who seek it.