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.

Mind set change

*****sadness warning issued on this post*******

I am sadly realizing, digesting, the mindset change I need to make

It seems to me in this moment it is so key to getting to a better place for both of us

This won’t be easy for me to write, it won’t be easy for some to read

But I see no way around having to do the hard work to embrace it

Ignoring, failing to acknowledge, will only prolong the issues we struggle with now

These issues affect both of us

Here is the truth: the hard bit:

The Matt I married is gone, he is no longer here with me—there, I said it out loud

I need to fully mourn that loss, celebrate the life we had, appreciate it for its depth, beauty, meaningfulness

Like if he were to have suddenly actually passed away, I need to do this alone, by myself, in my own way

I can not embrace the man I live with now, his uniqueness, his different needs, unless I say goodbye to the old Matt

If I don’t say goodbye, then I will forever expect him to still be here

I won’t be able to see what his abilities are now…..because of the expectation of the abilities he used to have

The new Matt has different needs, enjoys different things

This Matt communicates in a new, different way

I need to learn these new ways, these new needs

I need to understand, consider, that I may not be the right person to deliver all that he needs

I need to observe, learn, experiment, adjust

Only after mourning this loss will I have room for my new Matt

This is hard to say, expect it will be hard to do

I see no other choice….

4 responses to “Mind set change”

  1. mentalitysensationallyfc14c86ab9 Avatar
    mentalitysensationallyfc14c86ab9

    I am sending you a huge embrace, CJ. I feel your sadness and loss. My heart is with you. Love, Cathy

    Cathy Stierhoff clstierhoff@gmail.com clstierhoff@gmail.com 415-331-5578

    Liked by 1 person

  2. wondrous268336d70c Avatar
    wondrous268336d70c

    I am so sorry for your loss, beloved. May God give you peace as you move forward with this man you do not know. Choosing to love him and do what you are able to do. Please be gentle with yourself.

    Like

  3. It takes an incredible amount of courage and self-awareness to name grief like this, especially when the person you’re mourning is still physically present. What you wrote is honest, painful, and deeply human.

    Allowing yourself to fully acknowledge the loss, instead of pushing it down or pretending things haven’t changed, feels like an act of love – for him and for yourself. Mourning what was doesn’t mean giving up; it means making space for reality as it is now, and that’s hard, necessary work.

    I hope you give yourself a lot of grace as you move through this. You’re doing something very brave by facing it head-on instead of avoiding it. You’re not alone in this, even when it feels that way.

    Sending you so much care and strength. 💛

    Like

  4. It takes an incredible amount of courage and self-awareness to name grief like this, especially when the person you’re mourning is still physically present. What you wrote is honest, painful, and deeply human.

    Allowing yourself to fully acknowledge the loss, instead of pushing it down or pretending things haven’t changed, feels like an act of love – for him and for yourself. Mourning what was doesn’t mean giving up; it means making space for reality as it is now, and that’s hard, necessary work.

    I hope you give yourself a lot of grace as you move through this. You’re doing something very brave by facing it head-on instead of avoiding it. You’re not alone in this, even when it feels that way.

    Sending you so much care and strength. 💛

    Like

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