Caring for a loved one with Alzheimer’s can quickly overcome the caregiver. As you try to make your loved one safe, schedules can become a blur. What normally would take me ten minutes could mushroom into two hours. When you’re anxious, as I often was in the early years of our crisis, no detail at home or work was small. All loomed large. Too often I was forced into a corner, on the verge of meltdown.
From this kind of pressure was forged my Rule No. 1 for Caregivers: If you want to take good care of your loved one, you also need to take good care of yourself. It wasn’t that easy for me. Initially, I was either too shy about asking family and friends for help or too arrogant and dumb to think I needed help. Take your pick.
I heard an idea earlier this year that I wish I’d been aware of twenty years ago. I’ve referred to it a few times in my blog posts. A Georgia Tech friend from long ago, Dr. Ed Anderson, told me about it when he shared his family’s story last February. He lives in Nashville.
About three years after Ed’s wife Bev was diagnosed with a form of dementia, she went grocery shopping and left her keys in the car. Coming out with an armload of groceries, she couldn’t find the car—it was stolen. So she proceeded to walk a mile or so home with groceries in tow. It was time for Bev to stop driving, Ed decided. But that also meant she’d be isolated at home.
That’s when Bev’s good friend Karen Stevens stepped in. She talked with Ed about organizing a network of Bev’s friends who would take her on walks, go shopping, do lunch, go to movies, spend time together at home, and whatever else seemed practical and helpful.
“Most of us worked in pairs,” says Karen. “It was easier to keep a conversation going and often more fun for Bev.”
Says Ed: “I don't know how I could have managed without the support of Karen and the rest of Bev’s friends. Knowing that she is with them while I'm at work has been priceless, giving me great peace of mind.”
I discussed with Karen the model she set up for Bev and Ed so that I can pass it on to you. If you’re the exhausted caregiver of a loved one, I urge you to pay attention. If your friend’s family is struggling with Alzheimer’s or a similar crisis, figuring out how to help can be awkward. This idea can pay real dividends for all—victim, caregiver, family, and friends. If Karen’s model interests you, consider it a suggested template to be adapted to your own circumstance.
Had I heard about Karen’s model, I would have insisted on one thing: that all be friends of Martha with whom she was comfortable. As for who those friends could be—think book club, tennis or golf buddies, church circle, drinking and smack-talking buddies, whatever.
The best way to lay out Karen’s model is to ask her some questions and let her respond:
Me: Did you have trouble convincing Ed and Bev to do this?
Karen: No, it was a win-win for all. Actually, Bev wasn’t involved in the decision. The discussion centered on Ed’s desire to keep Bev’s friends involved as long as possible and in a fairly regular routine with what was familiar.
What are the first steps you took?
- I invited friends, neighbors, and Ed and his daughters to explore ideas for creating opportunities…as a friend, not as a caregiver.
- We selected a contact person responsible for sending the schedule out each week to those helping. That turned out to be me, which I wanted.
- I constructed a template for daily/weekly visits. We initially worked in two-hour increments; since then, the time frame has reduced.
How selective were you in picking friends?
This was the easy part. There were no specific criteria. Bev’s close friends—neighbors, tennis buddies, and school teachers—were eager to participate. Bev was an avid tennis player. She also taught for many years in a private school. These were the natural starting places.
Did her friends need training on how to deal with someone in Bev’s condition?
No. But as the dementia progressed we would share with each other what seemed to be working and what wasn’t. Group members would ask how to handle a certain situation—how to redirect a conversation, react to a particular behavior, etc. I’m no expert, but after attending several Alzheimer’s and dementia groups and conferences, I realized that common sense was my friend. There were no set rules or steps to follow; just ‘being there’ was enough. A nod and a smile appeared to be worth a hundred instructions. After all, don’t we all want to be acknowledged?
Additional questions centered on whether leaving Bev alone for any length of time was OK, then we realized that even 15 minutes alone might spur a concern. Would she be safe inside her house? Would she go for a walk in the neighborhood or possibly outside her familiar territory? She hasn’t been a ‘wanderer’ but that can probably change on a dime.
What type of activities did your team and Bev enjoy?
Walks around Radnor Lake park, at the mall (especially on rainy and cold days), and in the neighborhood. Also classes at the YMCA. Going to a movie and out to lunch. Blackberry picking and baking cookies. We’ve had to drop some of these as the dementia progressed.
Ed’s still working full-time as a physician. How do you keep him in the loop?
He and I usually talk on the weekend before I send out the schedule. He informs me of Bev’s upcoming appointments or times that he needs covered because of his own schedule.
Does Bev have paid caregivers at home now?
Yes, so we also coordinate with them. And there are two excellent day care programs here in Nashville that Bev goes to regularly—one called Sunny Day that’s sponsored by local churches and another at an assisted living facility that’s something of a national model, called Abe’s Garden.
How long has your model been working?
We’re starting our third year. Participating friends have changed, but we don’t have as many time slots to fill today as when we started.
How much time did it take you to set this up? And to maintain it on a week-to-week basis?
Creating the template took several revisions. I wanted to make it user-friendly for the team, but also for me. The initial draft probably took an hour. I set it up on a word document but you can also use an Excel sheet. I probably spend a half-hour a week maintaining it, primarily coordinating with Ed.
What’s been the hardest part for you?
Relaying to Ed what others had experienced during their visit with Bev as well as what my own experiences have been. Some are good to talk about, others are difficult, such as body odor, argumentative, restless, rambling thoughts, etc. Emotionally it’s too hard for me to talk to Ed in person about my best friend, so we usually talk on the phone.
What’s been the easiest?
Creating the template. I’m a ‘chart maker’.
What would you do different if you were to start over?
Initially I’d ask more friends to participate so the time commitment for each would be less. Now it actually is less as the disease progressed. We'd started with about a dozen friends.
Knowing what you know now, would you do this again?
Absolutely…what greater gift to my beloved ‘first friend in Nashville’ and to her family than to help in some small way? Being with her and knowing she would have been there for me in the same circumstance fills my thoughts. The smile on her face and the big hug she gives me are priceless. Through my tears, I know we’ve connected and loved each other unconditionally. I’m grateful for our time together and for her friendship.
Would you recommend this to others?
Yes! It’s a “gift that keeps on giving”—an invaluable present from one heart and soul to another.
Thank you, Karen.
I repeat myself: I wish I’d known of a program like this back in 1997 when Martha was diagnosed with Alzheimer’s. Martha’s friends and family helped early on but it was more random than regular. I have no doubt they would have helped further if I or one of Martha’s good friends had asked.
P.S. As usual, feel free to forward this post to your friends and family. If you’d like to sign up for my blog, it’s free; just click here.
P.P.S. My book A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s can be found on Amazon or ordered from any bookstore.