Uncle Lewy

Living out loud with Lewy Body Dementia

a very personal journey. Matt, CJ and Sheba….

This started spontaneously, part therapy, part keeping our peeps informed. I am finding my voice, evolving in this. The perspective is very much from my, CJ’s, perspective; the caregiving wife.

subscribe to follow…..comment to join us…..each eye that reads, is appreciated. This is a lonely making disease. Sharing moments is a bit of a sole suave.

Tight rope

Sometimes it feels like I am walking on a tight rope

Sometimes I can maintain balance, keep moving forward, slowly, step by step

Other times I feel like I am being pushed to my absolute limits and I am going to fall, never to recover

Being at risk of falling is enough to drive me insane, if there is no end, no off ramp

Constant stress of falling

They say caregiving puts the caregiver’s life at risk

I see it. The stress is palpable right now.

I not only have to own my own failures, I have to bear the constant loss. the loneliness of not having my partner by my side

His body is there

But he, the man I married, is not right now

I have no idea how long I can bear this constant loss drip

I really don’t know…………

2 responses to “Tight rope”

  1. Karen Watts Avatar
    Karen Watts

    Trust me—you’ve got this. I know right now it feels impossible, but we’re only handed things we can handle, even if it doesn’t seem that way at first. Speaking from personal experience, moments like these are incredibly tough.

    There will come a time when you’ll look back and see the strength you’ve gained, but I know today isn’t that day.

    Don’t try to go through this alone. Reach out to your friends anytime (including me)—even if you just need to cry, scream, vent, or simply have someone listen. Letting yourself feel and express the pain of this loss is crucial to healing, so don’t hold it back.

    I promise: you have the strength to make it through this.

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  2. wondrous268336d70c Avatar
    wondrous268336d70c

    This thing you are doing is one of the hardest of all things to bear. I pray for you to allow yourself to grieve. I love you, dear sister. Huge hugs and whatever you need that we can help you with are yours.

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