Uncle Lewy

Living out loud with Lewy Body Dementia

Bi-Coastal Concerns

While we live here on the west coast, another storm in brewing on the east coast

As many of you know, mom and her friend Ron became companions during the pandemic

They met at bridge, I think they were bridge partners first, and then things evolved into a situation where they spend most days and nights together even though they both have separate houses

Its great to see both of them find company with the other, they are both 88 years old

Ron’s family consists of a son and daughter; his son is in Atlanta and his daughter is somewhere in the Northwest, either Washington or Oregon

In my care of my mom, I have begun to worry about how much of a burden mom can carry to support Ron as he ages

I am being careful here to not over share because I don’t know that I have the right to, with regards to Ron’s health, just trust me there is a known worth serious consideration

The known is something I, unfortunately, have more than a normal amount of exposure to, lets just say

So as I return from being with her, I worry from afar about this storm that is brewing back east

Its a tricky balance, this

In order to care for mom in this situation, it means paying attention to Ron’s journey, which is not my place to control, but the place of his son to do

How Ron is doing on his journey, because they are each other’s daily person, impacts mom, will impact mom as things evolve

I worry she doesn’t have a clear, sober understanding of what maybe ahead, just how significantly it could affect her, put her health at risk

I don’t think Ron or his son have been on this journey before

His son has the more engaged relationship with Ron than the daughter, albeit his son lives in Atlanta, so not nearby

I have recently begun building a relationship with his son; my first lob over the net was in January when I heard he was scheduled for testing

Ron had intentionally kept us from meeting his son in person while we lived in Virginia; I think it was Ron’s way of controlling things

It really upset me at the time that during his son’s visits, even when I asked, Ron never made the time, never took the time, to enable us to meet him, even briefly

So now I find myself having to build a relationship with him while delicately trying to collaborate with him to deal with the current very real and serious concerns at hand

We’ve found common ground already; he sees and explicitly said that he does not think mom is the right “care giver” for his dad, for what his dad will need as things move along his journey

I couldn’t agree more and I was so very, very relieved when he texted that yesterday

I guess this new role I find myself in may be akin to being a coach: maybe its the best analogy because I have some experience in the journey Ron is facing, but I am not the one to execute the plays on the court, in the field

As a coach, I don’t get to go into this game and play, I need to keep my eyes open, see how things evolve, watch the play on the ground, talk with the other team members, find resources and ways to introduce those resources and let his son execute on the field with his dad

Influence, not do

I have a role, as does Barry my brother in this, but its NOT my role to make decisions for Ron, I am clear on that

The best I can hope for is to empower his son with all that I have to share and hope he can use that to steer the course for them

It IS my role to look out for the best interests of my mom, that’s for sure, but to do that successfully, at least as it regards this particular matter, it means working through and with his son, not rolling my sleeves up and getting directly involved in those decisions they will need to tee up and make

With their lives tangled up, for good reason, its going to be a test of my tendencies to want to just dive in and fix stuff, instead, I need to be more of a coach here in this situation

At a very minimum, it will be a distraction from my daily life here, it will be putting my accumulated knowledge to use for others to benefit from

That does feel good, being able to share what I have learned, the good, bad, ugly…….in hopes someone is able to avoid as much ugly, hard things as possible

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