Living With Dementia

A Parent’s Love

Bruce — Thu, 15 Dec 2011 16:21:06 +0000

Last week I had another bad seizure. Since September that makes 3, plus however many lighter seizures thrown in. So I called my parents to keep them up-to-date. Mom and Dad were both sympathetic. I told them it’s just part of having dementia; my seizures happen more as my dementia gets worse. I was trying to be matter-of-fact. Then almost at the same time Dad said,” I’m sorry,” and Mom said, “I wish it was me instead of you.” Without thinking I said, “No you don’t; believe me you don’t want this.” I didn’t know what else to say. Besides we both have it rough; I have to live with dementia and they have to watch me live with dementia. Neither job is easy.

Anyway, I shared this conversation with Anita and she helped me understand what Mom and Dad were really saying. Anita explained that their words were a parent’s way of expressing their love and care; that they said what any loving parent would say in a situation like this. And Anita’s right. Mom’s and Dad’s words came from the heart.

It’s probably very clear to you, as you read this, but I needed the reminder. The obvious isn’t so obvious to me anymore. What loving parent would want to see one of their children go through this? And my parents have seen me go through a lot. So I get it now, I understand the message behind the words. So I will say now what I wish I would have said then, “Thank you Mom and Dad for your loving and caring words. They mean a lot to me.” (And thank you Anita for helping me to understand.)

Life As I’ve Lived It

Bruce — Thu, 10 Nov 2011 01:31:23 +0000

There’s a movie called “The Bucket List.” As I understand it a “bucket list” is a list of things you want to do before you “kick the bucket” – die. In the movie one man helps another do the things on his list. Now, I’ll admit that I can think of things I’d like to do before I die, but if I made a list it would be of all the things I’ve enjoyed or been privileged to do: experiences I’ve had, places I’ve gone, people I’ve known, etc. It would be a long list and would include family and friends and relationships, trips I’ve taken, things I’ve seen and accomplishments. Not a “bucket list” but a “life I’ve lived” list. To me the “bucket list” feels like a sad thing to write, but a “life I’ve lived” list is full of gratitude and accomplishment. The longer a “bucket list” gets the harder it is to do those things. The longer a “life I’ve lived” list gets the fuller life is seen to be. No “bucket list” for me; no wishing this or that could have happened. Instead I’m thankful for the life I’ve lived, even with the bumps and twists along the way. Oh, and about my dementia… it’s one of those bumps or twists and despite how it’s affected my life and relationships, it doesn’t define me. It can’t erase anything that’s gone before. It may end my life sooner than expected, but it can’t take my life away from me.

Just to let you know…

Bruce — Tue, 01 Nov 2011 15:17:15 +0000

You might have noticed that I’m not writing as often as I used to. I still want to keep blogging, but I don’t have it in me to write as much as in the past. So I’m giving myself the freedom to write when I need to or want to, instead of feeling like I have to. I don’t know what this says about (if it says anything) about the progress of my dementia. I do feel like there have been some changes, but I can’t put my finger on just what they are. Life just feels different.

So check back in to see I’ve written something or subscribe to the blog and you’ll get an email notice when there is something new. I’m not ready to quit yet.

A Friend Who Cares

Bruce — Fri, 21 Oct 2011 16:02:31 +0000

Another favorite quote, this one by my favorite author -Fr. Henri Nouwen (1932-1996). Fr. Nouwen spent the last years of his life working in the L’Arche Community of “Daybreak” near Toronto, Canada. This community was centered on meeting the needs of severely disabled individuals. Through his work and his writings Henri touched people of faith all over the world.

“The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing… not healing, not curing… that is a friend who cares.” (Henri Nouwen)

Feeling Safe

Bruce — Thu, 13 Oct 2011 14:14:11 +0000

I came across the following quote by George Elliot during my prayer time today and found it very meaningful. I prayer that this might be real and true for all of us:

“Oh the comfort, the inexpressible comfort of feeling safe with a person; having neither to weigh thoughts nor measure words, but to pour them all out, just as they are,chaff and grain together, knowing that a faithful hand will take and sift them, keep what is worth keeping, and then, with the breath of kindness, blow the rest away.”
- George Elliot