"It’s Not Her, It’s The Disease" By Kerri Forrest

The Eighth 'Letter from a Caregiver,' Winter Season 2025/26.

The ‘Letters from a Caregiver’ Collaboration series continues with this article, the eighth letter of the Winter 2025/26 Season.

Previous letters, this season:

1. The Winter Season of ‘Letters from a Caregiver.’ Life’s Tapestry: the nuances, choices, and caregiving despite the fear. By Victoria

2. ‘You Each Deserve Your Own Life’ By Jodi Sh. Doff

3. ‘Relearning Hope In A Time Of Darkeness’ By Victoria

4. ‘Having Compassion for Your Earlier Self’ By Anna Du Pen

5. “Grasshopper, you are the expert” By Sarah Coomber

6. ‘You Published Your Book! And Now What?’ By Cindy Martindale

7. ‘The Light We Carry’ By Victoria

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Hello, dear Friends! If you’re new to Carer Mentor, you can learn more about me by reading Who Started Carer Mentor and Why?

Dear friends, I hope you’re giving yourself grace and self-compassion this January. While many are ‘hitting the ground running,’ we can easily fall into should-ing or envy.

Experience has taught me. Life events continue to remind me that I need to give myself more grace to accept where I am and what I’m feeling.

It’s especially true when early January includes anniversaries of loved ones’ passing. So, while I’m deep in house admin, checking health appointments and my company finances, I’m also choosing to dig a little deeper and stay longer on this threshold.

Doing the doing, caregiving and using the tools I’ve picked up over the years to check my own head-heart-gut alignment, is my own mental health check. There’s a natural, paradoxical tension between the doing and the feeling.

The key learning for me (because I’m a big advocate of personal agency) is to resist the urge to speed ahead into plans, in an effort to remove this tension. So, I’m taking a little extra time to reflect. After all, human-ing hard is all about paradoxical living, isn’t it?

A big focus of my recent reflections has been around fear. (I’ll be sharing tools and articles on my reflections over the following weeks.)

I’ve shared this with a few carer friends recently:

​Courage is not the absence of fear. Courage is fear walking.

It’s moving toward what matters.

- Susan David, in this article: ‘ Redefining Bravery: Courage is Not the Absence of Fear.” (Newsletter July 31, 2024)

After reading Kerri’s letter, I marvelled at all she’s endured. Her courage shines through it all. But geez, facing her mother’s accusations, being frustrated with every attempt to support and protect her, staying in that line of fire until things changed. We’re bearing witness to how Kerri’s surviving Dementia’s cruelty.

In a world that keeps telling us to be productive and efficient, it’s no wonder we feel bound to try to catch everything, prevent crises and smile like we know what we’re doing!

And yet, it’s simply not possible. We’re not superheroes with superpowers. We can’t steer a disease or predict outcomes of medications. We can’t prevent the difficult times or emergencies. We can’t stop grief from appearing or suddenly dominating our thoughts and days.

We can take small steps forward even when we’re scared. Courage.

We can seek support from other carers or counsellors to get some ideas of what might help us in our situation. Curiosity.

Thanks to Kerri for sharing her wisdom, courage, and curiosity with her younger self and with us, to inspire us to step forward into this new year.

Author’s Bio: Kerri Forrest is a daughter, sister, friend, and dedicated care partner who has spent the last decade serving as the “pinch hitter” for her family. Through navigating complex financial and health challenges, she has gained a profound understanding of how vulnerable we are to life’s unexpected shifts without a solid plan. Her writing draws from these eye-opening experiences to advocate for better preparation and support systems. Kerri writes ‘The Other Parenthood’

It’s Not Her, It’s The Disease

Dear Kerri,

Hey kiddo. I know you feel like your entire world is melting down right now. The violent reaction Mom had yesterday after being placed in the physical therapy rehab facility was feral, and the accusations she leveled really hurt you to your core. Your decision for her to go to rehab after pacemaker surgery was to give her time to heal and get some better habits in place. But she accused you of putting her away. She said you were a horrible daughter.

That was the day Mom became a stranger.

This is hard to hear, and you won’t understand it right now because of the complexities of our relationship with her, but it’s not her, it’s the disease.

You are on a different road now as you set out on this final journey with Mom. It will be longer than either of you could have possibly anticipated and it will be filled with so much pain some days, weeks, months, that you’ll believe that you don’t have the strength to see it through.

But you will. See, dementia—this awful, life-altering, mind-altering disorder—does something really sick. It can make the best parts of someone even better and the worst parts psychotic. Every journey is different. And your siblings, other family members, and friends are going to stand at arm’s length because they aren’t strong enough to stand in the direct line of fire with you.

For the next four years, you will find resilience you never knew existed as you watch her physical and mental capabilities decline. She will refuse ceding control although she knows she is losing it—refusing to see doctors, refusing to exercise, refusing to eat healthily, determined that she knows her body and everyone is against her.

She’s going to accuse you of trying to steal her identity when you turn in the license plates on her car because she forgot to pay the insurance and get the registration renewed.

She’s going to accuse you of trying to steal her house when you have to find new homeowners’ insurance because Nationwide stopped insuring in flood zones. You’ll have to get thousands of dollars of repairs done at your own expense, because she never gave you access to bank accounts, because she doesn’t trust anyone.

She’s going to accuse you of conspiring with the exterminator to steal her jewellery after he went into her bedroom to spray, and she will call the cops on both of you.

It’s going to be absolutely horrific. You will question your sanity for staying in the fight, knowing that it is taking its own toll on your physical and mental health.

But it’s not her, it’s the disease.

Mom always had sharp edges, and although she presents to the world as a nice person, privately she can be caustic. Being a Depression-era baby, Mom never trusted anyone, and she has always had contentious relationships with those closest to her.

So, what happens when that pattern meets the chemical alterations of dementia? Craziness.

During those darker days, everyone said, “Kerri, just hang in there. It’s not her, it’s the disease.” But they didn’t grow up with her; they hadn’t been privy to years of private conversations about the pains, resentments, and anger she carried towards so many people and the sharp tongue that would lash out whenever challenged.

So, it is understandable that you’re feeling disbelief that this isn’t her… on level 10.

But you are her caregiver. You are, and have always been since Dad died, the primary pinch hitter, the one who has always stood in the “direct line of fire.” And now you’re balancing the logistical weight of a declining life against the emotional debris of a complicated past. You’re the one who holds together a world you cannot stop from shattering, waiting for salvation from these chemical alterations of the mind.

The best advice I received during the worst of it was from a counsellor from the Alzheimer’s Association. Things were cratering quickly and I felt complete helplessness. She said, “You’re just going to have to wait for a significant event that gives you an opening.” I wish someone had said that to me sooner. I was running around with the catcher’s mitt trying to keep her world together while she was verbally attacking me almost daily. With that advice I was able to acknowledge that I was doing the best I could under the circumstances, and that I had to be okay with the things I had no control over. Without a diagnosis, I couldn’t get her the right medications, and until something forced us to the doctor, or a hospital, I’d have to wait.

But the shift did come and, while it’s not perfect, it is so much better. Our “opening” came when the prescriptions expired. The pharmacy refused to refill them unless she went to the doctor - which she had successfully avoided for more than a year. That event, and subsequently, her hospital stay after a fall, where we were finally able to get a formal dementia diagnosis, gave me what I needed to take care of her.

Now, one year into her finally being on the right medications, physical therapies, and care, she is an almost lovely human. She entertains and likes to be in the company of others. She sings happy birthday to people. She laughs with the dogs. She thanks me every evening when I leave her home for all I’ve done for her.

This upcoming Thanksgiving, cousin Nancy will invite us to dinner at her home, along with all of the paternal family as well as her friends and coworkers—more than 30 people in all. In past years, Mom would have told me to make up a reason for us not to go and we would have had another Whole Foods ham and sides.

But, this year, Mom will be excited to go. She and her caregiver will pick out outfits. She will ask me every day if we are going. She will get up and dressed that morning with (relatively) no pushback, and she will be impatient to get there.

Once we arrive, my cousins will surround her, take her into the house, and for three hours she will be engaging and engaged with everyone, laughing, telling stories, and eating well. She will be radiant and happy.

As I watch and reflect on everything we’ve been through, the question comes to my mind again: is this her or is this the disease? To see such a significant shift in Mom’s personality, to have friends and family come up to me and say, “she looks great and she’s so happy.”

My therapist shared some wisdom from another client:

Be grateful for the relationship you have now, even if it’s the one you thought you should have always had.

You’ve done everything for her these past 30 years to give her a good life. You will bring her through some of the most difficult days. And while we don’t know how much more of this journey we have to go, you will be okay—more resilient and wiser for the experience.

With love,

Kerri

The Closing Rapid Fire Questions from Victoria:

1. ‘Courage to me is... ’

Being scared and doing what’s right anyway.

2. Thinking of someone you admire/respect, name three of their standout qualities/characteristics. [Those qualities we admire in others? — They’re usually the values we elevate over others. They are the ones we aspire to because we hold them in high regard.]

My 95-year-old friend Johanna.

• Determination to make the world better

• A gratitude practice in the face of all adversity

• A killer sense of humour, even at 95

A prompt for readers’ discussion

• How do you maintain empathy and patience when a loved one lashes out, and what strategies help you remember that “it’s the disease”?

• Have you ever found yourself in a caregiving role you didn’t anticipate? How did you manage the transition from your “normal” relationship to becoming a care partner?

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