They call it the long goodbye.
That’s how society describes how Alzheimers feels to family members.
I’ve periodically been updating you on my family situation with my brother-in-law. To be clear, I am not the one in the trenches, so this is a view from afar.
With every column, I hear from dozens of you going through similar things. Misery does love company. All slightly different scenarios, but generally the same type of symptoms and emotions.
In our case, the decline has not been slow at all. I see differences within weeks, not months.
I have permission from the family to tell it like it is and not sugarcoat things, because there is no point in that.
Literally, within about three weeks, we saw our family member’s gait change. He was leaning so far forward and walking so quickly that he was tripping over his own feet. That started the falling episodes.
We had not yet experienced wandering, but then came the day when he went outside, unannounced and unseen, and walked over to the neighbour’s house. My sister found him spread eagle on the gravel driveway with no strength to get himself up.
Once the wandering starts, that’s a whole other concern that requires constant supervision and locked or alarmed doors. Everyone sleeps with one eye open.
While sitting in his recliner, he didn’t seem to be able to sit up straight. He was slumped over in an odd position.
In about the same timeframe came the incontinence. While he was not resistant to adult diapers, he didn’t seem to understand how they worked, so they would get torn off or get moved out of place.
I share the next story not in any way to embarrass anyone, but to me it gave me a huge wake-up call that things were rapidly getting worse. He urinated in the cats’ litter box.
Not to be inappropriate, but I did have to wonder what the five cats were thinking.
“Like dude, that’s our personal space!”
They made need therapy. (Trust me, you have to find humour where you can.)
There are always comical moments. He called my sister by one of the cat’s names. Heartbreaking, but somehow kind of sweet.
He doesn’t seem to realize his house of 50 years is home. He literally built the house and knows every inch of it, but now there is no recollection of which direction the bedrooms are in or which way to the bathroom or where dishes are kept in the kitchen.
He blurted out the other day: “The food isn’t that great at this hotel.”
Well, he’s not exactly wrong!
Every day can be “pants free” as we don’t confine that to Fridays any longer.
The only way I can really describe it is like having a toddler. You can’t look away for an instant in case they do something dangerous.
How do you really adult-proof a home?
There’s no way of knowing how or why they may do the next thing.
Why is he taking the air vents out of the floor?
Why did he put shoes on the table?
Why is he walking around with barbecue tongs?
Believe me when I say you cannot possibly foresee what may be next.
The biggest wake-up call came when my sister came to the difficult decision that she can’t care for him on her own and had to make the call to see if there is available home care.
She thought I’d be upset. Of course, I was, but not because it’s a bad decision. It’s the only decision.
But she said to me: “You thought he might get better, didn’t you?”
At that moment, the floodgates opened and I realized it was true.
I had been waiting for a reversal. Maybe not a reversal, but hoping for a slowing of the process or maybe a few weeks when he would be the way he was before.
Now, I knew for sure that was never going to happen.
For now, we wait for an in-home consultation to see if there is some help available for bathing, changing, babysitting...?
My understanding is the waiting lists are endless, and so we wait.
I’ll keep you posted as we meander through the paperwork and legal issues in hopes it might be of some help to others.
Until then we pray for our own sweet forgetfulness.
