The Progression of Dementia

A caregivers journey caring for someone living with dementia.

I looked in the mirror today.
Didn’t recognize the person who was staring back at me. 
I blame ambiguous grief. 
I’m not sure this will ever get easier. 
Here’s what happened.

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When you work in radio, one of the things that you have to do on a regular basis is get “airchecked” by your boss.  (This is when you and your boss listen back to your radio show and they provide feedback on what you did well and what you could improve on.)

I remember one specific aircheck that changed the way I did radio. I was told to remember that the audience doesn’t care what kind of day I’m having because my job as a radio personality is to help make YOUR day better.  This info was such an “aha moment”.

There were a few days where I found myself behind the audio board bawling my eyes out – because of bad news I had just found out about a family member or having to broadcast on 9/11 or because my Endometriosis was being an a-hole or let’s be honest, because of a stupid boy. However, when the microphone went ON – you would never, ever have known anything was wrong with me.  Why?  Because that was my job.

For decades, I became really good at hiding my emotions and it made me a great radio personality – because honestly, no one wants to tune into the radio and hear someone crying after the latest Beyonce track. 

Why am I telling you this?  Because something in me has shifted.

While I have trained myself over the decades to stay positive and keep smiling, I’m finding that my emotions are not giving me a choice anymore.  For some reason, I’m finding it hard to “fake it”.

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Being this age has its advantages and disadvantages.

Advantages: 

• I know shit. 

• I know how to say no to things that I don’t have time for.

• I know that you don’t need a LOT of friends, you just need a few GOOD ones.

• I know that family always comes first.

 Disadvantages:

• You start to realize that you’re getting older.

• You start to wonder if anyone cares about the person you are today.

• When you look in the mirror, you don’t see the same person you saw yesterday.

• You start to see your parents struggle with age related issues.

 Let’s talk about that last point. 

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Why is it, when you are raising children, there are 1000 people giving you advice on how to raise your kids – but when you have to take care of your aging parents, there’s just not enough info in the world to guide you.

Where are all the books titled, “How to deal with the excruciating pain of watching your mother suffer from dementia, while you father spends every single day desperately looking for a reason to move on without her by his side?”  Where is that book?  Seriously.

Listen, I know we are ALL going through stuff.  I get it, I really do.  I try my best to practice gratitude and give thanks when I can but recently the sadness has slowly started bubbling to the surface.

I received a text message from my Dad (who was visiting Mom at her long-term care home) and it read:

“Talk of getting a wheelchair for Mom.”

Of course, I received that text message while I was teaching a radio class with 25 students staring at me.  I dug deep down to keep the tears from flowing, and reminded myself that this would most likely happen in 2023/2024.

One week later, I received a text message from my Dad (who was visiting Mom at her long-term care home) and it read:

“Mom is now in her own wheelchair.”

I must have read that text 50 times before it sank in.  I left work and rushed to the long-term care home to see it for myself.  There she was.  Calm, loving and sweet, sitting in her new wheelchair.  I just stared at her.  It didn’t feel real.  I don’t want it to be real.  All the media training did not prepare me for the utter sadness I felt this past week and I just can’t push it down or “fake it” anymore.

It’s been a week now since she received her new wheelchair and the thought of it has consumed my life.  I sleep less than 4 hours every night wondering if I did everything I could to help stop the progression of the disease.  I have to remind myself to breathe because I keep holding my breath to stop myself from crying.  And when I do cry, I only allow myself to do so for a few minutes so I don’t fall into a deep depression.

Listen, I’m not writing this to get sympathy for myself or my family, or even social media likes…I guess I just want to you know that your parents do get older.  You just never know when you’re going to get a text or call that will change your life.

Yes, I am so grateful to have both my parents around but the ambiguous loss that Dad and I feel is somehow heightened when we see Mom being wheeled around in her own wheelchair. It’s a feeling I can’t describe.

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So, when you are listening to the radio and you hear your favourite announcer on the air – tell them how much you appreciate them – because you never know what is happening behind the mic.

And if you know a caregiver whose life has been fundamentally changed by someone living with dementia (or any other shit ass disease) – reach out to them, because believe me, they feel alone and are fighting a battle that is changing them to their core.

Sincerely,
Sam
xoxoxo