When there is a rock in our path, we can stumble over it or use it as a stepping stone.

Sunday, August 28, 2011

My Side of The Fence

Years ago, when I was first diagnosed, I had a blog called "My Side of the Fence," about life in the early stages of early onset dementia.    I just read a heartbreaking blog post from Mary at "Down The Rabbit Hole," called "Another piece of my husband is now gone forever."

It made me think of the title of my old blog because as the extensive comment I left on that post shows, this is one more example of the differences between those with dementia and those without.    As I wrote in part of my comment on that post:

"I can understand completely how your husband felt with the types of games you described as I would struggle with that type too. I would not rule out all board games for him (he might be ok with ones that only requiring rolling the dice and moving the marker a certain number of squares) but I would not remotely suggest subjecting any dementia patient to the type of games you were describing as they would be sheer torture. I know that was not remotely your intent, that you were trying to get him to share the "fun," but even just reading what you were writing made me recoil thinking of how much I would struggle with something like that myself and I am still considered "high functioning" for a dementia patient."

I know those without dementia can consider something like that fun and enjoyable just as I remember the days when I used to enjoy things such as going to live theatre or an occasional movie or live concert or an amusement park or a fair but now just the thought of such things makes me recoil as I know how badly messed up I would be by that much stimulation.   Yet these are things that millions of folks without dementia do regularly for enjoyment.

For those caretakers who read me, please remember when planning things for your loved one, the view from our side of the fence is very different.   Even if we used to love it, if it is more than our brain can handle now, what you planned for us as fun will be a very different (and very non enjoyable experience for us).    Let the patient take the lead in showing you what they can handle (and enjoy) whenever possible please.   Both of you will find much more pleasure in life that way.


Kathy said...

Thank you for sharing this info.
Trying to keep Hubby's frustrations for mental stimulation, even to music with words, to a minimum is my goal. I don't always succeed but I try.
I appreciate your insight of this.

Stumblinn said...

It is not an easy thing to do because (as I see with my own roommate) even when you live with someone you don't always know what is going on in inside of them.

Sometimes I see her do things that makes life more difficult for me and then when she and I discuss it, I find out she was trying to help me but was still back on an earlier point of where I was and not aware of changes in me that make something that would have worked for me in the past a challenge for me to cope with now.

Thankfully many of with dementia have those in our life who care enough about us to keep trying to understand where we are now.