It Feels like the Opposite of Hope

Simplify Caring Tiny Online Office

What is hardest about dementia for me?
The fact that it feels like the opposite of hope.

All our lives we live in hope. In hope of what is coming. Watching kids grow up. Grandkids. Hoping for promotion. Hoping for recognition. Hoping with a lottery ticket!

Dementia sends a strong message, pointing in the other direction. Dementia says, this situation isn’t turning around. This is a one-way road and now we must face the limiting questions. How do we make today OK? How much time do we have? How long can I do this? How much of the person we knew is still able to connect with us? Will I also become like this?

As carers or caregivers to parents with dementia related illness, we straddle our hope infused life and this limiting, one-way road world. We leave the daily bustle to enter the subdued life environment of our ‘patient’. Visit done, we step out the door into sunshine, or rain, and traffic and supper plans and being present with the family and friends.

All of this together is life as we know it now. For me it is mom in a care home who hasn’t recognized me for several years now and lost understandable speech with the last stroke. It is also my beloved father-in-law who is just at the beginning of a similar journey. He is being cognitively assessed and incrementally losing his cherished, independant life.

I write this post not as a sales pitch. On this road of sorting and organizing our parents’ lives when they no longer could, we, as collaborating siblings recognized the need for a tool to help us plan and organize. It is our story. I have heard many of your stories and am so grateful you shared.

Feeling less alone in this chapter of our lives is a good thing.
be well

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