May 4, 2011

Keeping The Love Alive: Walking Tall

When old people lose the ability to walk independently, it's the beginning of the end. Do what you can to help her walk on her own...
By Sheryl Lynn
Alzheimer's Reading Room

I don't recall his name, if he ever offered it, but his words were my introduction to the fine art of caregiving.

It was November of 1982. I was strapped into my airplane seat, on my way to my hometown to attend my great-aunt's funeral. I fell into a conversation with the man who was sitting on my right side. He asked me what kind of work I did, and I asked him the same question. He told me he was a podiatrist.

My mother was in her early sixties. The head injury that would later develop into dementia was twenty-four years away. No one in my family, to the best of my knowledge, ever had dementia. Up to that point, they all died of other illnesses before dementia had a chance to show up. I was in my late twenties. I'm certain the question I then asked didn't come from me. I didn't have the life experience to think it up.

I asked, "My mother is in her early sixties. What advice can you give me to help her as she gets older?"

He replied, "When old people lose the ability to walk independently, it's the beginning of the end. Do what you can to help her walk on her own."

I didn't know, at that time, how wise he was. I do now.

Looking back on the last years of my mother's life, I wasn't the world's best caregiver. I wasn't the world's worst caregiver. Like the rest of us, my skills went up and down each day as I went up and down and my mom went up and down. Some days I could read my mother's mind and come up with the perfect words to say or the perfect action to take. And then there were the other days when I didn't seem to have a clue about what to do to help her.

I cared for my mother twice, for four months after she came out of rehab after her fall, and for six weeks a year later. My PTSD wasn't a good match for the severe mood swings that followed her head injury. If I could have handled it, I would have been delighted to have cared for her until her death. I did what I could do until I couldn't do it anymore.

We had physical therapists provide outpatient care for her after her fall. They'd come to my home, helping her learn to walk differently. Her walking was pretty good and steadily got better. The therapists both suggested she use a cane. My mom would play the game with them, carefully following their directions while they were there and then hiding the cane when they'd leave. She'd pretend she didn't know where she'd put the cane. I knew she knew, and she knew I knew she knew.

You know?

I eventually convinced her to start using the cane. She agreed. Her definition of using the cane and mine didn't exactly match up. I wanted her to put the tip of the cane on the ground to help support her as she walked. I'd seen other people do that, and it made sense to me. Not her. She saw the cane as a fashion statement. She'd hook the cane over her wrist, never soiling its tip by placing it on (gasp!) the ground. I'd catch her doing her Fred Astaire impression and say, "Hey! You're not using your cane!" She'd grin at me, point, and say, "I'm using it. Here is it."

Parents. Can't live with them. Very hard to get used to living without them.

I made the decision to let her use the cane as she wanted, both because she wasn't going to do it my way and because she seemed safe and stable enough.

I remembered the podiatrist's words, to do what I could do to keep her independent. And she was independent.

I brought her back to my home a year later. Her condition had deteriorated, and I wanted to see where she now was before making any decisions about what the next level of care would be.

Her walking wasn't as strong. I asked one of my closest friends to teach her how to walk with a cane. She's had double knee replacements and had cared for her stepfather with Alzheimer's. I figured she was very well qualified to take on this job.

She beautifully broke down all the movements the body needed to make and the cane needed to make and used small words to teach her these skills. She treated my mom with patience, love and respect. My mom once more played the game, doing what my friend wanted her to do. We all were so proud of her. And, if you're a caregiver, you'll know what followed. After she left, my mom went back into her Fred Astaire period..

I saw my friend gently holding my mom's elbow while walking her from room to room. That bothered me. She was taking my mom's independence away from her by helping her to walk. In the most tactful way I could say the words, I asked her to stop doing it, that my mother needed to walk on her own.

She'd always guided the walking of older people by holding their elbows. That's what she did, out of respect for their age. She didn't understand why I'd ask her to do something different, but she agreed to do it.

Years later, after her mother and her great-aunt were now residents of the same nursing home, she told me she'd finally gotten her aha moment. She'd made them too dependent upon her by doing everything for them, including helping them walk. She thanked me for showing her a different way, and she apologized for not understanding why I was doing what I was doing with my mom.

During that same stay, I took my mom out to lunch at a popular restaurant. I always looked for places that had a ramp she could easily walk. This place had no ramp. She'd have to climb over the low curb onto the sidewalk.

My mom was absolutely terrified at the thought of doing this. She begged me to hold her hand, to pull her up. She cried.

Oh, this was painful. I felt like the most uncaring daughter in the world for doing what I was about to do. But I had to do what I had to do.

I told her no. I pointed out a nearby lamppost, inviting her to grab onto the lamppost for support. I promised her I'd be right there with her, to catch her if she started to fall. I told her I knew she could do this, that she'd be fine. I also told her what the podiatrist had told me twenty-seven years earlier. I told her I wanted her to be independent for as long as possible, that there might be a time when she'd have to do this alone and that I wanted her to learn how to do this now. I encouraged her. I trusted her ability to do this for herself. I trusted her legs were strong enough to support her weight. I positioned myself behind her, preparing myself to catch her if need be. I'd caught her before when she'd started to fall. I trusted I'd be able to catch her now.

And she trusted me. She grabbed onto the lamppost, and she did it.

I cried. I hugged her and kissed her cheek. Enormous love for her filled my heart.

Oh, she was so proud of herself! And I was so proud of her! I told her how proud I was of her, over and over, and I thanked her for trusting me.

Her walking improved, and her confidence in her ability to still be independent in her life improved.

My inability to cope with her mood swings made it necessary for me once more to hand her care over to others. Some of them didn't encourage her to walk on her own. They held her elbow. And she began escaping. I believe she wanted her independence. When she was out on her own, she could walk as she wanted, where she wanted, and forever long she wanted, without anyone's hand anywhere on her. I'd told the caregivers what I'd wanted them to do for her. Some did it and some didn't.

I knew the time had come to do the thing I'd promised my mom I would never do. I found her a facility designed for those living with memory issues, where she could walk by herself when she wanted, where she wanted.

She got her walker several months after she'd moved into her facility. She'd fallen twice in ten days, sustaining two more head injuries. I gave up. The professionals all told me it was time for the walker. I'd heard her scream while having the CAT scan and while being stitched up. I couldn't handle seeing her in total fear and in great pain. Following the advice of the physical therapist, I stayed with her for five weeks, helping her learn to use the walker. She got to be quite good at walking with it, once she realized she couldn't do her Fred Astaire impression with it. She'd leave it behind when she didn't feel she needed it or when she forgot she had it. The caregivers kept a closer watch on her. So did her three girlfriends. All four of them would hold hands as they walked to and from activities together. No one fell when The Cool Girls, as I'd named them, were together.

The therapist had suggested that I do something to make the walker look attractive, that she'd be more likely to use it if it looked inviting. I could do that. I went to the local crafts store and bought a six-foot garland of bright Hawaiian-style silk flowers to wrap around one of its bars. Oh, it was a fashion statement, let me tell you. She had the most eye-catching walker in the house. Everyone in her facility raved about it.

I took my mom and her walker out to lunch one day. A young woman spied the walker and said, "Wow, when I get old, I want a walker just like yours. That's stylin'!" My mom beamed. Have you ever met a woman who didn't enjoy getting compliments on what she was wearing? The walker had now become part of her. She was glad it was dressed as well as she was.

On February 9, my mom and her walker were making their way down the hall. She'd just finished breakfast. She seemed fine until she carefully laid herself down on the floor and went into her final illness. I won't go into the details of what happened after she laid down. I will say that she went the way she wanted, walking until she could no longer walk.

She passed away four days later.

And Max Wallack, if you're reading this, the director of my mom's facility was the one who pointed out to me that the colors on one of the Springbok puzzles you sent in honor of my mom's memory exactly matched the colors of the flowers that had adorned her walker.

Thank you for doing that.

I'm no expert on any of this. I'm just an unemployed caregiver in transition, grieving the death of my mom and the loss of my job and my perceived identity.

Our story may not be relevant to your situation. And, then again, it might.

I invite you to consider what I've shared, to take what works for you and to leave the rest behind.

"And they discovered something very interesting: when it comes to walking, most of the ant's thinking and decision-making is not in its brain at all. It's distributed. It's in its legs." - Kevin Kelly

Sheryl Lynn is the author of the upcoming book "The Light Is A Thank You," which chronicles the spiritual journey through dementia she has taken with her mother, Eleanor. She is the host of "Glow With The Flow Radio Show," currently on hiatus.

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More Insight and Advice for Caregivers

The Alzheimer’s Action Plan: The Experts’ Guide to the Best Diag­no­sis and Treat­ment for Mem­ory Prob­lems
The 36-Hour Day A Family Guide to Caring for People with Alzheimer Disease

Original content Sheryl Lynn, the Alzheimer's Reading Room