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.

A Loss, A Win

We suffered a loss, Courtney moved out

For 2 months we had help, it seemed a good thing

But there are things outside of our control, things outside of our reach

For personal reasons she decided to go back to Kansas with no clear plan to return

It’s a big set back

I now know what it is like to have some freedom

Now it’s gone, a loss

I am grateful for the 2 months of help, I want to focus on that

I read once that gratefulness is the best tonic for stress, I choose that medicine

I choose to be grateful for having her here for 2 months, not to focus on the seas pool of loss

We did have a HUGE win Friday

Our shared primary care doctor asked if we had gotten Matt into Physical Therapy yet

I had followed up on the referral only to be told the only resource the system could offer was in San Francisco

As much as I love the city, driving from Sonoma to SF a couple times per week just wasn’t something that made sense

So I had been trying to call local PT offices and we had that as something Courtney was going to help me with

PT as well as speech therapy were prescribed by both his PCP and nuerologist

My support group recently bemoaned how hard it has been to get into PT

At our doc visit, I let her know what I found, my trouble getting that done

She had an idea: she asked Matt if he was driving

No, he hasn’t driven in over 2 years now (not that he wouldn’t want to if given the chance to be sure!)

So she qualified him for in home care for PT, ST, OT and a social worker

They will come to us!

Better yet, Sunday, less than 2 days after this win, my phone rang with the PT case manager wanting to come by that day

The next day, I hear from a speech therapist, the social worker

Beyond words here…….so incredibly helpful this is!

Ok, I need to spill some beans here, the visiting social worker always raises concern for me

The only thing I really have known about social workers is what I see in TV crime shows and movies

Social workers take babies away form folks wrapped up in a bad scene, or otherwise throw a skeptical eye on a home, tear it apart

I am learning the full scope of their function in society, but I am still a bit nervous about that visit

This will definitely be a learning path for me

Back to the win: having them come to us is, I can’t tell you how big, a HUGE win for us

The moment the doc suggested it, I started clapping my hands, a truly involuntary spontaneous reaction!

What we will be doing on the home front to replace what we had with Courtney remains to be seen

I found value in having someone else living here

Having someone else to talk to, have a conversation with

Another person to casually help Matt in the evenings when it’s the hardest

So we may look to rent out that en-suite out, to the right person

We may bring in home care workers

Probably in the new year

Next week will be a week of family time

And then the year is basically over

So I am grateful for short term positive experiences, doctors who really engage, finding a medical system that seems to be working for us, and mostly, for family who have been here for us, continue to be here for us, through all of this

One response to “A Loss, A Win”

  1. Sometimes you have to roll with the punches and see what life hands you. It sounds like you’ve gotten both positive and negative events happen lately, but mostly positive

    Liked by 1 person

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