A Long Way to Go

I’ve traveled a lot this summer: to a Buddhist Cultural Center for a retreat about dementia care; to south Alabama for quality time with a dear friend; to the mountains of North Carolina for rest and relaxation; and finally to New York City for one last family vacation celebration before my daughter goes to college. The journeys remind me, naturally, of the path I am currently traveling with my mother.

I remmber the exact moment when my caregiving journey began. I was standing in the kitchen of my mother’s old house. I’d seen a prescription medication on the counter and asked her about it. It was Prednisone, a steroid, and she told me she was taking it for severe eczema, a skin condition I didn’t know she had. I’d seen occasional red marks on her hands, but she always wore slacks and long-sleeved blouses, so her skin was mostly hidden from sight. As she sheepishly took off her blouse to show me her arms and back, I saw that large areas were red and even scabbed, where she’d scratched them until they bled.

Okay, it’s time, I thought. I have to take care of her now.

She had been to a dermatologist in Chattanooga, a half-hour drive from where she lived, and he had prescribed the steroid pills and ointment. But she was angry with that practice (“They were rude to me!”) and she was having a hard time sticking to the strict medication schedule. Both her anger at a perceived slight and her inability to take the medication on time were early signs of dementia in an otherwise active, kind-hearted, highly intelligent woman.

So the journey began.

My siblings and I developed a mantra for Mom’s journey: “As much independence as possible for as long as possible.” She lived in her house for another year or so, then spent a year in a beautiful senior living apartment in our hometown, where we hoped she’d be active but safe. My sister and I were only an hour and a half away, and all her friends were there.

I found her a dermatologist in Atlanta, and met her there when she drove down for appointments. This seemed like a win-win: she got to live independently, but I was there to keep up with her medical care and ask any questions she might forget. But the eczema never cleared up. I began to realize that until she had more help, this was going to be an issue, but that giving her more help might mean taking away her freedom before she was ready. Our win-win became a Catch-22.

One day she got lost on the way to an appointment, and though she found her way to me fairly quickly, she was rattled. I didn’t want to believe she should stop driving, but of course the writing was on the wall. I hoped she’d give up her car but stay in her apartment, where she had friends who could drive her to all her activities. But she announced that she wanted to be “closer to her girls,” and we began planning the move to Atlanta.

At that point in the journey we made a decision that has affected all of us in ways I wasn’t expecting. We chose to move Mom into assisted living, though she was physically very healthy (except for her skin). For me, it was a simple matter of logistics, combined with what I understood about good dementia care, which included a concept called “aging in place.” (This concept has come in and out of favor, but it made sense to me at the time.)

“Stay where you are as long as possible,” I told Mom, “because when you move to Atlanta you are going to assisted living. I want you in a place where you can stay for the rest of your life.” She agreed, but maddeningly insisted on the move, which I had hoped to postpone another year or so.

We chose a lovely facility with a memory-care unit (for later in the journey), and placed Mom in an apartment in the general-care section, where she could have her own bedroom, kitchenette, and living room, tastefully furnished with her favorite things from home.

But it isn’t home. She quickly started calling it “that place.”

She didn’t take to the activities, which are good, but nothing like the rich volunteer and social life she’d led with her friends. Nearly five years later, she still talks about wanting to move back to her former apartment (though never her house). When we’re on an outing and I tell her it’s time to go home, she says with a sigh, “Okay. Take me back to jail.”

And I get it. No matter how beautiful the facility, when you can’t drive and you can’t even walk out the front door alone (for your own safety, of course), you’re a prisoner. This is sad for her and frustrating for us, because we’ve become responsible for tending to Mom’s social and emotional well-being in ways we never expected. We do it gladly, but it takes a toll. It’s a rough part of the journey.

I’ll never know if we made the right decision to put her in assisted living when we did. I have a lot to say about the plusses and minuses of the current assisted living model. I believe there’s room for growth in our society’s approach to elder care, particularly emotional care, and perhaps I’ll share my thoughts on that in future posts. Of course, there’s room for growth in our society’s approach to many things – environmental issues, racism, and education come to mind, just for starters – so I don’t expect miracles overnight. But I do hope for change.

Still, with all its complexities and disappointments, assisted living has produced one genuine miracle: Mom’s eczema is almost completely gone. Now that she is on a medication schedule, and has the gentle hands of a nursing assistant to rub ointment on the occasional flare-up, Mom is free from the itching, pain, and bleeding that plagued her for longer than we knew. Thank you, Assisted Living.

So the journey goes. As I write this, I’m flying home from my last trip of the summer. I was supposed to be home yesterday, but runway problems at the airport required the plane to drop some weight, and I volunteered to be bumped to a later flight. As in dementia care, a problem also contained a blessing, as I gained time to read, think, and rest before returning to my journey with Mom.

We’re running into some turbulence on my physical flight. Mom and I will have more turbulence, too, on our metaphorical trip to her final destination. But it’s okay. My seat belt is buckled. Let’s continue the journey.

A ship on the Hudson, reminding me that journeys take many forms.

A ship on the Hudson, reminding me that journeys take many forms.

2 thoughts on “A Long Way to Go

  1. Continuing to pray fior all of you Carolyn. It is a journey with ups and downs of all descriptions. A friend who had made the journey before I set out with my mom encouraged me to cherish the plateaus and I now pass that on to you. My journey with mom in the last 10 years of her life ended up being one of the greatest blessings of my life. I pray that for you as well. Blessings as you go

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