Virtual dementia tour

I put on dark glasses that blocked my vision. I put in ear buds that chanted gibberish and wailing sirens. I put on too-big gloves, one inside out. I put plastic inserts in my shoes that poked me constantly.

Then I went into a darkened room with a strobe light flashing and attempted to complete several tasks, spoken to me quietly in quick order.

Uh, what?

I fumbled around, remembering the tasks, but not able to complete them all because I couldn’t find what I was looking for. Where were the towels?

I have the advantage of a good memory and the ability to block out noise and pain – at least temporarily.

But for people with dementia, this distorted reality might be too real.

Stoney River Memory Care in Marshfield provided the session for members of the Wood County Coalition Against Abuse Interdisciplinary Team recently. The purpose of the I-Team is to increase awareness surrounding the topic of abuse and neglect of elders and adults at risk in Wood County, to coordinate efforts of various agencies that respond to abuse and neglect and to facilitate the development of better resources and preventative efforts. We meet quarterly to learn and share. We have different guest speakers and topics each time.

The virtual dementia tour is meant to simulate what a person with dementia might be experiencing. The shoe inserts mimic foot pain or chronic pain, and they make you more unsteady. The glasses distort and darken vision as might be the case with eye problems in elderly people. They also alter your “normal” reality. The gloves make you fumble more – you’re less sure of your grip and have trouble with fine motor skills. The ear buds that provide constant noise distract from the task at hand. They make it hard to hear instructions, just as hearing loss can make it hard to hear people’s voices.

We were timed as we did our tasks, although our results weren’t revealed. I think the timing was meant to encourage us to keep going and wrap up our tour – not that anyone would want to stay longer than necessary.

We knew we were only in that situation for a short time. We were doing it willingly.

People with dementia don’t have that luxury.

The women who offered the tour said they encourage family members to take the tour to get an idea of what it’s like for their loved ones with dementia. They said people sometimes break down, realizing how difficult it would be to live like that.

The tour should help caregivers – both family and professional – understand the importance of speaking slowly and clearly, making eye contact, only giving one task or suggestion at a time, showing what you want accomplished and taking into account pain and confusion.

The virtual dementia tour gave me a better understanding for what it might be like to live with dementia and a greater appreciation for caregivers. If you get the chance, I strongly encourage you to take a tour.

Other duties as assigned

Everyone jokes about "other duties as assigned" on their job description. Usually it’s meant to cover the minutia  of a job that can’t be easily captured in broad statements.

I’ve learned in my new job that it means a whole lot more.

Even though I have an office job doing community relations, research and project work, I do a lot more. That’s the nature of assisted living. We move furniture, we clean and fix things, we plant shrubs and flowers (and water them when it doesn’t rain), we paint walls and stain wood. We joke about other duties as assigned.

Recently, I was assigned to remove a wallpaper border from a resident’s room and then put up a new one. I finally picked a day to dress down and tackle the project.

It came off pretty easily. I was able to peel back the top covering, spritz it with water and scrape off the backing. Soon I was ready to put up the new border. I held it up to see how it would look. The walls are painted three colors: taupe on the bottom, cream where the border had been, about eye level and little above, and a pale lavender above to the ceiling. I held up the pine cone border over the cream. It looked nice, but I wanted to be sure. So I called in a co-worker. She agreed it looked nice. She even held it up so I could stand back and look. Yup, we thought it would go nicely with the colors and theme of the room.

I’ve taken down a lot of wallpaper in my life. Layers of it, sometimes, over rough plaster walls. It tests your will. After all, if you start to remove the paper, you are committed. It’s not a job you can leave half done.

But I’ve never put up wallpaper. Neither my husband nor I particularly like it. (See note above about removing the nasty stuff.) So, when it came time to put it up, I asked a co-worker if she thought I should use the water method alone or the border adhesive we had in storage. She said she’d only ever done it with water. I knew I’d have to paste on the adhesive, and you still need to book it, so I thought using water would be easier.

She said she’d help when I got to the long stretches when it would take two people to handle the job.

I measured and cut my first piece, wet it in the sink, booked it for the required two minutes and put it up with a wet sponge. It went up pretty easy. I worked my way around the room, doing the smaller sections, leaving the two lengths for the end.

I opened my last package and started to measure the long pieces. I dithered over where to cut it for the seam on one end. I measured for my final piece so I’d have everything ready to go when my co-worker got back to help.

There wasn’t enough. I was almost 3 feet too short. Grr. I didn’t think we had any more in storage. What to do?  I could seam the long wall and maybe repaint the short one so it’s one color without the cream border. I couldn’t come up with other solutions. Try to match it? I did find a match online, so maybe that’s an option.

My co-worker came back, and I shared my dilemma. She said she’d check to see if we happened to have more in storage. “Let’s leave it until Monday,” she said. I agreed.

A few minutes later she came back in the office as I sat looking at wallpaper borders online.

At about the same time realization was dawning on me she asked, “Is it upside down?”

Rats. I made a face. It was. At least according to the pictures online. The straight edge should go at the top – as if you were placing it against the ceiling as a border. I’d turned it around. I thought it looked like a shelf with pinecones resting on it.

She started to laugh. I apologized. She thought it was funny. “Now you have a story to tell your family when you go home tonight,” she said.

“Yeah, that I’m an idiot,” I said.

Everyone who stopped to see what I was working on during the afternoon probably thought I was clueless, too. They told me it looked nice. Maybe they were just being nice. Poor girl, they thought. She doesn’t even know how to hang wallpaper.

Oh well. I still think it looks nice this way. But it is an excuse to take it all down and find enough of a border to cover all the walls.

That would be another duty as assigned.

The things they bring me

Two residents stopped in the office. One was holding two small, clear bowls, stacked, with four large tortilla chips in the top bowl.

The resident holding the bowls set them on my desk and proceeded to take out the chips, telling me about a business deal in southern Wisconsin that wasn’t working out. He explained how I needed to fix it or fire the guy. The chips were the product, which he wasn’t happy about.

As he headed for the door, I asked if he wanted to take the chips with him. No, he said. His companion looked at the chips hungrily but didn’t reach for them either.

So, they sat on my desk for a while.

A little later, the first resident returned and left me a pizza crust as well. He had snacked on his leftovers from lunch out with a family member or friend. I guess I was the depository for leftover food that day.

I cleaned up the leftovers and took the dishes to the kitchen. It’s just one of the things they bring.

People with dementia act in different ways. Some tend to walk a lot. Some ask the same questions over and over. Some forget where their rooms are and go into other residents’ rooms. Some forget that items belong to them.

We have several residents who tend to pick up items and move them around. We find odd things in odd places. Some of those misplaced items wind up in the office where we collect them until we figure out where they go. Staff members usually can identify someone in a photo to get it back to the right owner. We recall who collects knickknacks or who has outdoor decorations in their room. Eventually, items are returned. We know some things will move again, but that’s OK.

Some things go missing. Clothing, slippers, TV remotes. Glasses, dentures, hearing aids. Those are little more troublesome. Sometimes they turn up in the wash – literally. One day we found someone’s dentures in the box for newspapers. Those waited on my desk until someone could figure out their owner.

It’s always interesting what they bring. Arm-chair covers. Books and magazines. Lamp shades. Baskets. Flowers. Cups. Bowls.

And, apparently, tortilla chips, too.

Surprises in assisted living

I started my new job in January. After more than 20 years in the newspaper business, I made the switch to health care. I’m the community relations director for Hilltop Affiliates Inc., a group of assisted living facilities in Wisconsin Rapids.

I pretty much knew what I was getting into. I knew what my boss expected of me – what challenges I’d face, what my role would be. Like any new job, there was a learning curve. Still is, as a matter of fact. I’m learning all the time. Part of my job is to research projects and information for our business, so I spend a lot of time on the computer, reading everything I can and watching the occasional video about more topics than I thought possible.

I enjoy my new job, very much. It’s better hours, less stress, a LOT fewer emails. I can choose which project I’ll work on at any given time. I usually have several things going at once, so I can switch back and forth as information is discovered or the mood strikes.

I’ve learned so many ins and outs, it’s amazing to me. I know more about Alzheimer’s disease and dementia than I thought possible – and yet I’m certainly not an expert. I am fascinated by the brain, though, and I read every story about every study that comes out. 

There have been some unexpected things about this job, too. 

The biggest surprise was how much I’d get to know our residents. I share an office at our main building. Unless the vacuum is running or someone is in a private meeting, the door is open and the residents, family members and guests go by and sometimes come in. I see them in the halls and sitting areas. I say good morning at breakfast and goodbye when I’m leaving. I get to know them during activities and when they need some attention.

I enjoy their smiles and greetings. I know they don’t remember my name, but I call them by name, usually each time I see them. Names are sort of a touchstone, although no one has told me that. But it’s a way for them to remember who they are when other names – Mom, Dad, Grandma, Grandpa – no longer have the same meaning.

I also didn’t realize how much I’d sing. I never had to sing at the paper – except the very rare party when we planned to make fools of ourselves. Now I’ve been singing so much I could join a choir. I’m not a singer. I can carry a tune. I can harmonize. I’ll sing in a crowd or at church. But I don’t think I have a nice singing voice. My voice is unusual, and I think it’s a little disconcerting when I sing. But the residents don’t seem to care. They love their sing-alongs, and I’ve been pulled into leading them a little more often lately. They usually are old-time songs. Some are new to me, but old hat for our residents. Others I remember from elementary music class. It’s surprising how the words to something like “America the Beautiful” will stick with you. 

I’m not surprised how much I enjoy my new job, though. In this blog, I’d like to share some insights into my job and our industry. Assisted living isn’t well understood until you’re in it. Dementia is a vague illness until it threatens your family. So, come along on this journey with me. You might be surprised at what you learn.