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.

Prayer Topics

Just going to come right out and define it, asking for this kind of help we need in a clear way

I sooooo appreciate many of you who want to help but geography is a hurdle

So for my prayer warriors out there who love and care for us, this post is for you

I don’t know what drives his evening “environmental dependence” or “utilization” behavior, whatever it is called, but it is cray cray making for me, a huge stress driver

It used to be mostly at night, now it’s showing up all times of the day

It’s difficult to know if it’s best to change the environment, change meds, change something else

If environmental changes are needed, which ones should we make, which will have the greatest impact, do we need to find help here, if so who….

So prayers for his spirit to be calmer, his need to fiddle with stuff inappropriately, clarity for me to understand what needs to be changed in the environment here to ease this stress and who, if anyone, could power boost that

Prayers for better nightly sleep: mostly we have been lucky to both sleep well through the night

Last night wasn’t so good, he was restless, I had leg cramps (that was due, I know, to my red wine drinking during the awful ACC championship game)

He has trouble getting into bed fully, he seems to sleep sometimes on the edge and I worry he may fall off some day

So I guess there are 2 requests here: for good sleep and for clarity on the changes we may need to make to help him be able to get fully onto the bed each time

You can pray for the wine drinking too if you feel called to do that! God knows it would help my health!

Prayers for full sense of rest for me; I never feel rested anymore

There is a constant angst in my body, soul

Prayers that I can understand, hear Matt when he talks

It’s a known aspect of this journey with Uncle Lewy that speech gets softer, words jarbled

But goodness gracious! It’s an intense 24/7/365 challenge

Either my ears need to be blessed with a program upgrade, his mouth blessed with a program upgrade, or some other compensating thing….stress driver

Mary shared something with me this morning after listening to a televised sermon

The recommendations were around Christmas management, a lot likely focused on family gatherings and folks managing political talk

But there was one thing in the midst of the recommendations that struck me as something worth understanding more: under the title “Notice your false need and give it to God” they list as number 4 (of 5): “being there for others”

I don’t believe God asks us to abdicate our life, the Bible does say God helps those who help themselves

So that particular “false need” as defined is something I am chewing on

I don’t believe it’s intended to be absolute, meaning I don’t think, or better would be surprised to learn, that we were encouraged to NOT be there for each other at all

Jesus did wash the feet of others which is definitively being there for others

So I think this must be getting to proper boundaries, personal limits we take on, how we allow it to control us, our day, our thinking

So prayers clarity can come to me around that would be nice as I chew on this

Thank you for keeping us in your prayers, for lifting these things up to God (and the committee working up there including Nana, Dolly, Tony, Nancy and the rest of the gang)

3 responses to “Prayer Topics”

  1. Thanks for the clarification of Prayer request. However, nowhere in the Bible does it say God helps those who help themselves. He is there for all of us even when we don’t understand why things are happening to us.

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    1. Love ya, sis

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  2. wondrous268336d70c Avatar
    wondrous268336d70c

    Please hear me in the gentlest voice possible, beloved. The most frustrating and disheartening thing we, as human beings, face is the realization that we cannot do anything to change the situation we find to be intolerable. We want to just DO something! Accepting the reality goes against everything we feel is right. In my own life, it has meant forgiving those who have not asked for forgiveness, knowing that any healing has to come from God. I am and will continue to pray for you to be comforted and to find peace. I love you so much.

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