Dementia is defined by the National Institute on Aging (www.nia.nih.gov) as the loss of cognitive functioning — thinking, remembering, and reasoning — to such an extent that it interferes with a person's daily life and activities.
There are several types of dementia, of which Alzheimer's is one.
Disclaimer: What follows is not medical advice. Just one person’s musings on her experience of the journey…namely mine, of parents living with dementia. In my case, versions of dementia…not Alzheimer’s.
I am forever grateful for the incredible support of my siblings and the village beyond.
My thoughts…
After the initial shock, one of the things that I think made the whole thing eventually easier for me, although in itself challenging, but was important for me to accept, was the fact that the person living with dementia (PLWD) is still there. As simplistic as it sounds… the person that I know, and love, is still there and… and they too are navigating the other side of the same coin that I found myself navigating, albeit in a different way.
For them, and obviously I am making this up, since they cannot tell me, I imagine for them, its a space of “there’s something wrong but I can’t quite put it into words”. For me (and my siblings), it is “oh my god what the hell is happening?!”
As the child juggling this new reality… it was very sobering, and if it hadn’t hit before… your parents are mere humans.
One of the things that stood out for me, and perhaps the how we navigated their (our parents), and our (my siblings and I) journey through this, was, we loosely held to the adage ‘once a man, twice a child’. I understand…I get why people say this…, but I chose to see it differently by mostly holding onto our established roles. These were my parents, and I their child. This afforded them the respect that I believe they were due in the twilight of their lives. And I was being given the honour and the privilege to help them during this chapter of their evolution. It allowed them to be themselves, for me to see them as themselves, and treat them accordingly.
It was not easy. And let’s not get it twisted - it took a village. And I get that we are all not blessed with support, incredible and otherwise. So this is also a note to sometimes extend a little grace to people we come into contact with because you have no idea what someone is going through…beyond the smiles and the showing up for life.
This is heartbreak. Daily. I called it the long goodbye…
The book I was referred to for reference is The 36 Hour Day. The title is apt, because sometimes, and especially in the beginning, that was exactly what it felt like. The longest days ever. With no end in sight. Additionally, there was no luxury of time to figure it out, or come up with a game plan. You’re kind of on this roller coaster ride that’s moving along at Mach one, with all the twists and turns that if you’re into that kinda thing would normally give you a little thrill, and if you’re not, then…now… you’re holding on for dear life, and you just have to go with it and hope and pray that all the decisions you make in the moment … work out for the best.
You will be OK. They will be too. It settles down…eventually. There are continuous adjustments to the seemingly ever-changing new normal. But it does take time. There will be middle of the night phone calls. Your life will be turned upside down. But it settles down… eventually.
Find support. It’s there. Unfortunately, my experience was there was no 1-888-help me mid-drowning number to call here in Jamaica. I was lucky and blessed with amazing siblings and we all played to our strengths to take the best care of our loved ones during this time. It took a village.
But whether with dementia. Or aging parents —the sickness you didn’t see coming...
The first gift... Be gentle with yourself.
- Log in to post comments