When you lit*er*al*ly get to experience what it's like to live with dementia

Truth Serum Tell #24

On Saturday, Sis, Dad, and I attended a free “Dementia Moments” workshop at Hospice of the Valley’s Dementia Care & Education Campus. This 3-hour workshop gives volunteers and caregivers an opportunity to “participate in this interactive presentation featuring an 8-minute experience that presses participants to perform everyday tasks as if they were living with cognitive impairment. This simulation will be followed by a general review of the most common types of dementia and how progressive brain changes impact thinking, functioning and behaviors.”

This particular HoV campus serves patients with dementia and everyone who works there has had extra training to care for this population.

For 8 minutes, we got to experience what it’s like living with dementia.

And it was both enlightening and emotional.

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There’s a common misconception about hospice. When people hear that word, they assume “end of life.” I know I did. For the most part, they tend to come in for the last 3-6 months of a person’s life. But actually, the services they provide depend upon the needs of the patient. Something we learned a little over a year ago.

My mom has been in the program since Nov 2023. A referral she earned from her neurologist at the time. HoV came out and did an in-home assessment and determined that she was eligible to receive their in-home services. Being part of the program means she has a new team of doctors and nurses, 24/7 support that’s just a phone call away, and no more doctor visits pertaining to her dementia. Doctors and nurses come to her.

And they will come any time. Day or night.

It means that before we call 911, we call HoV.

It means she gets a weekly nurse visit, a twice weekly CNA visit (to bathe her), and (now) bi-monthly evals from the doctor assigned to her. We call her Dr. T (her name is Greek and hard to pronounce. LOL).

It means they provide (and deliver) her dementia meds, DMEs, and supplies (adult briefs, pee pads they call “chucks”, wet wipes, etc.).

During her time in this program:

• They’ve called 911 for us. Once.

• Provided a lightweight, portable wheelchair that we still use.

• Provided a portable bed that could be raised up and down (gave that back once she recovered from her falls).

• Received a home visit from a mobile X-ray unit.

• Had a music therapy session with a musician who brought a portable harp. Who knew!

• And have had a handful of late-night visits.

Despite the fact that they don’t provide in-home health assistance (which is what we need), this organization has been invaluable to us.

THE EXPERIENCE

Each of us had a blue bag that contained the following items:

• A pair of pants

• A long-sleeved, button-down shirt

• A leather belt

• A paper “contract”

• A pen

• Three pairs of socks (black, gray, white)

• $.42 in change

• A ziplock baggie containing;

  • A pair of sunglasses

  • A pair of gloves

  • A set of headphones

The sunglasses were a classic pair of Terminator glasses with two black dots dead center and the lenses were smeared with, I dunno, gel or Vaseline maybe? This is to simulate the degeneration of vision that occurs.

The headphones had a recording on it providing instructions on what to do with the contents of the bag.

And the gloves simulated the sensory obstruction that dementia patients feel.

For this 8-minute experience, we had to put on the sunglasses, the headphones, and the gloves to perform 5 tasks.

What the moderator doesn’t tell you is that the instructions are drowned out by every. Single. Fucking. Audio. Distraction you can imagine: planes, radio, TV, people talking/coughing/sneezing, dogs barking, phones ringing, babies crying, cars honking, etc.

It was the longest 8 minutes of my life.

At the end of it, for Sis and I, our reaction was basically

followed quickly by

I don’t know what my Dad’s reaction was since he was sitting on the other side of Sis. Our reactions were validated moments later when one of the employees brought over a roll of toilet paper (because they didn’t have any Kleenex on hand—note to organizers) and said, “When I first did this, my mind shut down.”

Right.

Those 5 tasks we had to do?

• Thread the belt through the pant loops

• Put on the long-sleeved shirt and button it

• Count out $.27

• Pair the socks together

• Sign the “contract”

After the initial HoV welcome greeting, the instructions were immediately drowned out by the noise and I either forgot what I had to do or didn’t hear it because she said them too quickly.

I figured out I had to pair the socks.

I figured out I had to sign the contract (but sure as fuck couldn’t read it).

I didn’t know if I was supposed to put on the pants, so I looked at what everyone else was doing. And ok, no, not put them on, just thread the belt through.

I put on the shirt, but sure as fuck couldn’t button it.

And I didn’t remember anything about the coins.

There was barely 20 of us in that room and at the end of the exercise, it was so quiet you could’ve heard a mouse fart.

We understood the assignment:

For us, it was only 8 minutes.

For my mom, it’s every. Fucking. Day. And will get much worse as the disease progresses.

This campus is considering rolling out a virtual option of this workshop, but instead of the physical experience, you watch a video of what it’s like from that person’s POV. We were the first Saturday class they were showing it to, and they wanted to get our feedback. Overall, I think it’s great that they’re offering a virtual option for those that can’t/won’t come to in-person classes. However, the impact of the in-person experience is more visceral and real.

Watching the video reminded me of all the compliance videos I have to watch at my Corp Hell Job, where someone is reenacting a harassment scenario. But in this case, it’s two women acting as a mother and daughter and you’re seeing what this disease is like through the mother’s eyes. The effect isn’t as strong, and it might as well be just another presentation.

You just have to be there.

LESSONS LEARNED

So, by the end of this little experiment here’s some of the things we learned:

• What the brain looks like as the disease progresses

• Her subcategory of dementia is lewy body. She’s already exhibiting the symptoms, particularly the visual hallucinations.

• When giving instructions, say them slowly. And one at a time; no lists (i.e. “do this and this and this”)

• Be more mindful of her exposure to noise, and that includes who comes over to the house. All the noises we take for granted (getting ice out of the fridge, cooking, clanking dishes, the volume on the TV, a chair scraping against the floor, etc.) may sound like a cacophony of noise to her.

• Give her time to respond when asking her a question. The moderator said to start counting when you ask a question. If it takes her 20-30 seconds to respond, we know it’s taking her brain longer to process information.

• Be more mindful of how we present ourselves to her. She can tell when we’re frustrated/irritated/angry with her and she responds accordingly or becomes weepy (on occasion). I really-times-three have to work on this. I’ve been treating her like a stranger, and I know she’s been picking up on that.

• Self-care for the caregiver is important. I really-times-three have to work on this as well. I know what it should look like for me (after reading

  Marlo Leaman
  ’s “Sit, be still, and listen” post over at What an Adventure, I booked an info sesh this Wednesday to learn about Transcendental Meditation), but my Dad doesn’t know how to do that. And I honestly don’t know what he would do. I can’t imagine how hard it is for him when they used to do everything together.

For the three of us, this workshop was like a Come-to-Jesus-breaking-point-before-you-do-something-about-it moment. And I believe our reactions (even my Dad broke down a little) were coming from a place of guilt. He even admitted aloud to the class, “I wish we had done this sooner. I thought I was prepared for the changes, but not really.”

But, now, FINALLY.

FINALLY, we lit*er*al*ly understand what she’s going through, where’s she coming from, and all the whys and hows.

I’m just gonna say this… if you’re caring for someone with Alzheimer’s or dementia, and you have the opportunity to participate in a workshop like this

DO IT!

If you don’t know, now you’ll know.

And you really need to know.

I write short and steamy interracial romance novellas under the name Evolet Yvaine. If you like stories that will make your panties wet, I invite you to become a member of the Wet Panty Society and join me on my writing journey. It comes with perks! (in addition to other… perky things)