Dementia Lessons: Riding The Learning Curve

Ladies Room

 

by Colleen Lanier

When your loved one has Alzheimer’s or dementia, there is no shortage of lessons to be learned. I learned one of those lessons the hard way, when Joan got trapped in the bathroom.

I had known Joan and her husband, Henry, since I was 16, and they were like second parents to me. A few years ago, when I was in my late 40s, I was in a relationship with their son Sean. We had traveled to Wisconsin for Henry’s aneurysm surgery, which was scheduled at a large hospital in Milwaukee, two hours away from their home. We drove to Milwaukee the night before his early morning procedure and checked into a hotel. Joan, who was in the mid-stages of Alzheimer’s, was unsettled by the change and couldn’t relax. I decided to take her for a walk around the hotel, hoping she would become more comfortable.

Joan didn’t really know who I was exactly, but she always recognized me as someone familiar, and would usually take my hand if I offered it. I had learned in prior outings that by holding her hand I could steer her away from impulses such as walking into the men’s room, patting people’s heads as she passed by them, and helping herself to whatever glittery object crossed her path. We slowly walked the perimeter of the hotel, and at the far end of the conference wing we came to the restrooms. I asked her if she needed to use the bathroom, and opened the door.

Joan walked in ahead of me, saying, “Why not? As long as we’re here, we might as well.”

“Might as well,” I agreed.

I opened the nearest stall for her, and she walked in, promptly latching the door. I didn’t think much of it at the time, because we had done this many times before. I was in the habit of taking her to the bathroom, but for the most part she was able to do everything herself once we got there.

Not tonight. I was washing my hands when I heard her door rattle. I looked up, and in the mirror I could see her hand grabbing the top of the stall door, shaking it forcefully.

“Joan? Are you okay in there?”

No answer. The rattling got more forceful, and I could hear her starting to pant. I could see her feet going up and down almost as if she were marching.

I was right in front of her stall door and peeked through the gap, trying to catch her attention. “Joan, it’s okay. I’m right here. We’ll be fine. Can you let go of the door so I can help you?”

No answer. Joan was escalating into panic, one hand on the latch, trying to push it forward, and one hand on the top of the door shaking it. She did not seem to hear me.

I tried something different, entering the adjacent stall and standing on the toilet so I could look down into her stall. She was shaking, sweating, and frantically pushing at the door, clearly frightened.

“Joan! Look up. I am here with you. I will help you get out. It will be okay. Can you look at me? Please, Joan? Can you talk to me?”

No answer. She did not respond to my voice, and I knew I was going to have to step in to get her out of that stall. I quickly ran through my options, not liking any of them. I couldn’t call for help, because my phone was back in the room charging. I hadn’t noticed any phones near the bathrooms when we were walking, either. We were pretty far away from the lobby, and the wing we were in had been deserted. I didn’t want to leave her alone in the bathroom if at all possible. That left me with one option on my list.

I eyed the floor, trying not to think about all the germs that had been ground into the worn grey tiles of this less-than-pristine bathroom. I couldn’t crawl in, so I was going to have to slide in on my back, with only a thin layer of cotton between me and the floor. I would figure it out once I got in there, and hoped Joan wouldn’t step on me, kick me or try to push me out as I tried to help her. I sat on the bathroom floor, and leaned down to stick my head under the stall door. I tugged on Joan’s pants, and that finally got her attention.

“Hi Joan. I think it’s time to get you out of here. Sound good to you?”

She looked at me, confusion evident on her face.

“See that silver bar up there?” I pointed at the latch. “Can you slide it to the left for me?”

Without saying a word, Joan started hitting the door with her palms.

I looked at the floor, looked at Joan, and gently pushed her shins, trying to guide her backwards. There wasn’t much room to work with, and I was gratified when she took the cue and backed up a little. I pushed again, and she backed up a few inches more.

I must confess that sliding under a bathroom door is something I hope never to repeat. It was awkward, uncomfortable and unpleasant for me. It was confusing, crowded and scary for Joan. At one point I looked up and found her studying me intently. The panic subsided when she had something in front of her to focus on: me, on the bathroom floor, trying to figure out how to sit up enough to reach the latch, which finally, blessedly, slid open.

As soon as the door opened, Joan calmly stepped over me and walked to the sink to wash her hands. I joined her, scrubbing my hands and arms, thrilled to be off the floor. Looking in the mirror, I saw that my hair was disheveled and wet in a few places. I was going to need more than a sink, so I offered Joan my hand and we walked back toward our rooms.

Sean was in the lobby pouring two cups of coffee. He smiled when he saw us, and held up a cup, letting me know it was for me.

“Coffee sounds wonderful,” I said. “But I need to take shower. Right now. A nice hot one. Maybe you can have a cup with your mom while I am getting cleaned up? I’ll be quick.” Joan was already busy rearranging the packets of sugar and creamer.

He tilted his head to the right, something he did unconsciously when he had a question. “Do I want to know?”

“Sean, I don’t want to know. But locks are definitely on the list. We need to make sure someone holds the door for her, or goes in. No more locks, okay?”

The “list,” as we called it, was our way of keeping track of what was no longer possible, safe or positive for Joan.

“Understood. Sorry. Take your time.”

“Nothing a hot shower, cup of coffee, and a few nightmares won’t fix. It’s just one of those things. There’s no way of knowing something’s been lost until she shows us it’s gone. Tonight she showed me locks are beyond her understanding. We’ll put it on the list and work around it. Lesson learned.”

Joan’s inability to unlock doors was something we became very thankful for when she started wandering in the middle of the night. She stayed safely within her home, turning lights on and off, brushing her teeth with every brush she could find, and enjoying bathrooms without locks.

I am happy to say I have stayed off bathroom floors. Once was enough.

 

Colleen Lanier is a registered nurse with a private consulting firm, and the author of Miles from Home, a memoir of an emotional journey made by Colleen and her first love Sean to transport his ailing parents to an assisted-living facility in the Pacific Northwest. It’s a story about the messiness of life, death, friendship, and, ultimately, the power of love. The book is available at colleenlanier.com.

miles from home

 



7 Responses to “Dementia Lessons: Riding The Learning Curve”

  1. DEbra barfield says:

    THank you so much for sharing this.god bless all who suffer from these terrible diseases.

  2. Marjorie Behnken says:

    I really enjoyed this captivating, well written insight into the world of Alzheimer’s.

  3. Tari says:

    Thank you, very helpful info! Much appreciated.

  4. pat carter says:

    joan is very lucky to haveyou . i have had to go in a men’s restroom to check on my husband who alzhemirs

  5. Nancy Vining says:

    My husband was diagnosed with Alzheimer’s Dementia in 2009. I recently have had to install deadbolt locks that are keyed rather than the kind you can undo by hand. He has begun to walk away. I now keep the keys with me full time. Still locks defeat him. Many times I have found the bathroom door locked after he had just been in there. I now keep a small case knife inside the air conditioning closet, so I can quickly undo the door in case he is trapped inside and can’t figure out the ‘combination’ any more. Thank you for your reminder that familiar things can be gone in an instant.

  6. Debi says:

    This story just opens the flood gates of my mind and memories of caring for my Mom. That paniced look, the fear of a child, the lack of not being able to understand why they can’t remember. My heart goes out to every caregiver that has a parent, relative, friend that is dealing with this illness. It’s also funny in an odd way, as I too had many lists, and had to keep adding and adding new things on that list. I cared for my Mom for 6 years in our home. My life was turned upside down, Mom, well, just didn’t know. She lived in a Alzhiemers facility for 6 years, then passed just 2 years ago. A relief, somewhat, but my Mom had all ready left me many, many years before. I miss my Mom so very much, I can’t even express the feelings I have. Anyone who lives this experience knows from where I come. God Bless you ALL!

  7. Sheila says:

    We all can symbolize in one way or another, my mother suffered from a mild form dementia she knew me and my brother but not others. She didn’t want to be bothered with others and didn’t talk to many people if at all she passed away in 1963. I miss her just as much today if not more. Let us all hope if the same fate befalls us that we have a compassionate caretaker as Colleen.

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