“You can’t trust anybody here.”
His eyes looked full of fear and it felt like I’d been punched in the gut.
My Dad looked scared. No one wants to see their Dad look scared.
“These people will do anything to get us to buy this hotel and we’re going to get ripped off.”
Ummm… okay.
I looked around at our surroundings. We were now in the airport, not a hotel.
We were not in a hotel and we were not buying a hotel.
We were returning from a trip to Vancouver. What was supposed to be a fun and silly time spent with my family to celebrate one of my favourite things, me, had turned out to be a weekend of anxiety, confusion and fear for my Dad.
Not the intention.
We had all known that my Dad’s mental state had been for awhile kinda… short circuiting… but no one had officially said the word dementia yet.
That trip was when I had realized that I had lost the Dad I had grown up with.
I could no longer get advice from him. Well, unless it was to be cautious when buying hotels, I guess.
I could no longer share what was going on in my life with him and expect him to comprehend what I was saying. There would be flashes of clarity but they would get more and more infrequent and would be replaced by that destroyer of all joy… fear.
Crazy, I can take. My whole family is crazy.
Wild imaginations. Miscommunications. Plain old ridiculousness.
But constant fear… no. I don’t like that one bit.
It was supposed to be a fun weekend away with family, but I can’t look at photos of that time without wincing.
That was the weekend I knew I had lost my Dad.
In the subsequent years, he’s no longer constantly fearful but we’ve learned that my Dad has Parkinson’s Disease and Parkinson’s Disease Dementia.
It is a cruel disease. Though to be fair, most diseases are cruel. Very few diseases are described as ‘pretty great’ or ‘fun to have’.
My sister and I have lost the Dad we knew.
My Mom has lost her spouse and, worse, her best friend. She turns to him to talk about what they just watched on the news or a TV show and he is unable to engage.
He’s not dead but it sometimes feels like it’s worse than that.
Like we’re stuck in that moment right before a loved one dies.
They’re gone but not fully yet.
The thought of it is brutal. It wreaks havoc on your soul.
Even typing this out I can feel my chest tightening.
You just can’t live like that.
No, you have to kick back at life’s attempts to drag you down as well.
You have to kick a hole in those inky black confining walls.
Let the light back in.
How?
You talk.
You vent.
You let it out.
Imagine a kettle with no spout and a tightly sealed lid.
Without an exit for that built up steam, it’s going to blow up.
My Mom has had great help from the Alzheimer’s Society of Canada (Alzheimer’s being a blanket term for dementia support).
I’ve watched support groups and workshops she attends raise her spirits and help her either make sense of, or at least accept, what is happening.
My sister and I have have had more candid conversations in the past few years than we’ve ever had in our lives.
You need to get those feelings out.
It will be gross, uncomfortable and messy at first… but it is essential.
Otherwise, you’ll go crazy.
And if you’re stressing over a loved one with dementia, you’re all good for crazy. You don’t need anymore crazy.
I went for a pint with a pal recently. We shared stories of our mutual experiences with loved ones going through dementia. Apparently I was wearing my emotional stress on my sleeve more blatantly than I thought as he spoke up and offered me a listening ear anytime I needed.
I could see the concern on his face.
He’s not an emotional man. This was not an airy-fairy offer.
However, he could recognize the need for talking something out.
Like basic maintenance for the soul so you can move on and get back to living life because there’s a bunch of shit you kinda need to do.
I think in these unexpected times of stress, worry and overwhelming emotion, it’s really good that we realize we’re not that special.
Others have walked our exact same path… and survived.
So, no matter what you’re going through… speak up.
Talk about it.
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I feel so lucky to have not had to go through this with my parents and so far, at almost 80, so good. Fortunately my closest friends of 70 years standing are still not suffering this terrible state. It is terrifying to not be able to recall a word or name. I can’t imagine losing large chunks of your memory and abilities. Yes,you do need to talk about this with those who care for you . I have a friend who used to give her mom a big bowl of buttons to sort. Every day, same buttons. Her mom loved sorting buttons. It made her happy. It didn’t matter to her but even as one part of my brain acknowledged this ,the other wanted her to get bored or annoyed or feel patronized. This is what i needed to get my head around. Talking helps
I was a caregiver for my mother, who lived to age 102, and my aunt, who loved to age 94. One thing I was taught about older people is that they do best when they can stick to a healthy routine. Although you might like to get them out and stimulated, too much confusion and change disorients them. That’s just in normal old people; it is even worse for those with memory issues. I can completely understand why your papa was thrown off by the airport. Routine might be boring for those around them (I never want to watch another nature program) but it keeps them on an even keel.