Medication Management in Alzheimer’s Caregiving: A Never Ending Carousel Ride

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Medication management in Alzheimer’s care is the ultimate trial and error exercise.

There is no cure. The name of the game is slowing disease progression and managing symptoms. Prescriptions are written based on hypotheses and degrees of certainty, not on absolutes. There are none of those symptoms change over time.

In addition to worry and consternation, each change in Mom’s symptoms or behavior brings lots of discussion about how best to manage through it. And at least part of those discussions, on our journey anyway, tends medication related.

So medication management in my caregiving life feels like a never ending carousel ride that I didn’t willingly buy a ticket for and don’t care to be on. Just when you think it’s safe to step off the platform and head out the dingy metal gate, it starts moving again and there you stay. There you are stuck.

The change d’jour

Mom’s demeanor has changed markedly in the past 4 months. The change has been so drastic that at times I barely recognize her. She’s angry, agitated and depressed.

While these changes were not unexpected, they shook me. Over the years of caring for Mom as her Alzheimer’s has progressed, my heart’s been calloused as a coping mechanism.

At some point when this is all over, I hope and expect to feel and process the sadness of this journey-but until then the callous is my shield. And this change saddened my calloused heart to the core. Mom’s hallmarks have always been her kindness and warmth and compassion. And that was all gone, on the surface anyway.

Managing the change

When I realized these changes weren’t a string of a few bad days, they were a trend and evidence of a change-it set off yet another round of discussions with all the stakeholders in Mom’s care.

Mom’s neurologist. Her primary care physician. The nursing staff at her assisted living community. We were all standing together at the starting line of a new game of trial and error. Again.

Way too many phone calls and emails later we came up with an action plan. It included various social and emotional actions to better support Mom….and medication. Of course.

Hello Trazodone

The stakeholders were in agreement that it was worth Mom on Trazodone, a drug that I know nothing about except for the fact that it’s prescribed to our over anxious puppy Maggie.

I don’t want Mom to be angry and anxious all the time. But I don’t want her to be knocked out all the time either. It felt like a lose-lose situation, just like countless other decisions I’ve had to make in recent years.

Yet I took confidence in the consensus-between Mom’s neurologist, primary care and assisted living staff-that it’s worth a shot. So with blind and shaky confidence, I gave the go ahead to add Trazodone to Mom’s medication mix.

And the early returns seemed to be….just what we were looking for!

It’s working….I think

Before long, Mom’s demeanor seemed warmer and more positive when we spoke on FaceTime or the phone. Conversations didn’t immediately devolve into angry rants or delusional tirades.

It was mellow mood Mom-far from all roses but she was no longer unrecognizable. It seemed as though the introduction of Trazodone was paying off.

I was happy with the positive development and glad to be able to converse with Mom again without the anger and suspicion. But I had questions. Namely, was Mom just laying in bed all day? Because every time I spoke with her, it seemed like she was.

Being a remote caregiver, I have to rely on others to be my in-person eyes and ears. More so now, more than ever, given all the restrictions in place to keep residents safe from COVID-19. As wonderful as the staff at her assisted living community is, I couldn’t get a clear picture of how Mom was handling the Trazodone.

Then I visited

Mom’s community is still urging outdoor, socially distanced visits and we were scheduled for 12pm this past Sunday. We’re professionals at these visits by now and so is the community.

Mom is typically helped outside promptly at the scheduled time and we make the most of every one of our 30 minutes. But that’s not what happened this past Sunday.

At 12:05, the activities coordinator came outside to let us know that Mom was moving a little slow and she’d be out in five more minutes. Five Minutes passed and then ten more. Lucy and I waited patiently.

Lucy waiting patiently.

Lucy kept me laughing but I was getting a bit nervous wondering what the problem was. Then out came Holly the Activities Coordinator letting us know that Mom said she’s not up for a visit today. Heart. Broken.

Not because Mom said she didn’t want a visit, but because of the state we were in. She was so zonked out from this new medication I authorized, that she didn’t want to, or couldn’t find the energy (or will?) to get out of bed and walk outside to see two of her favorite people.

It was as if someone mainlined the rankest form of guilt imaginable directly into my veins. The freshly injected guilt was momentarily debilitating but I had to do something about it.

In we went

After a bit of conversation and another round of temperature checks, we were allowed inside the building and Mom’s room to say hello-supervised and with masks on of course.

The appreciation I have for the staff at her community for allowing this knows no bounds. It was a quick five minute visit, but it meant the world to this caregiver in that moment.

When we entered the room, Mom was laying on top of her covers on her bed, dressed for the day, watching the television. She seemed surprised but happy that we were there.

All in all, this was better than I expected. I’m not sure exactly what I was expecting but it was something along the lines of her still being in her nightgown fully tucked in bed with the lights off. Phew for not seeing that. I smiled inside and out, playfully joking with her about her keeping us waiting outside.

The few minutes we had were just enough time for me to assess for myself how Mom was managing and plenty of time for Lucy to make her smile and laugh. Grandchildren have a special, beautiful knack for doing that.

The never ending carousel of medication management

Like everything else in life and in caregiving, medication management is about trade-offs.

What’s better for Mom? Decreased anger and agitation or increased lethargy? I think I’ll take the former with determination (and hope) that we can work through the lethargy by other means.

For now, anyway, and we’ll see how it goes. In my Alzheimer’s caregiving life, there is no certainty that comes with medication management.

It’s a never ending carousel ride that we can’t get off. And it won’t be long until I’m standing on the starting line of a new game of trial and error.

Originally published at https://roandsteve.com on August 18, 2020.

Surrounded by Alzheimer’s and Lewy Body Dementia. Founder of Ro & Steve. Working my way through life and dementia caregiving.