This is what I worry about these days

From all we have learned from those who have tread this path before us, there will be something that happens in the future that will send Matt down a slippery slope

It happens often with diagnosis like his, a virus, an infection, a fall begins that downward slide, everything changes in an instant

We saw that with Granny, she lived her life with substantial freedom, driving her little car with furry covers on her seat, steering wheel and seat belt well into her 90’s

She was dealing with underlying health issues, as her 90 year old body was breaking down a bit quicker than her 90 year old brain for sure

It was the fall she had in early 2024 that sent her down that slippery slope

Within less than 4 months, she found the end of the slide, she crossed the rainbow bridge

But it was that one thing, it was destined to happen at some point, it was that thing, the catalyst

I worry, I watch for that one thing with Matt now

He’s seemingly aware his brain is not holding up its role and responsibilities

He said something to Nora, our caregiver, Friday about needing to go to the bank so he could withdraw money…he needed to do something before his brain gave out on him

This indicates he’s painfully aware his clock is ticking……

What is that catalyst going to be for him? How hard should I work to make his life like a safe rubber room to avoid it? How do I move through my days making the right choices, taking the right risks, avoiding the right risks?

Do we live and risk or do we not live, play it safe? How hard do we try to avoid anything, everything, that might lead to that cataclysmic moment? Would that thing, that fall, that infection, happened some other way if we had made a different choice?

That’s what I believe about Granny, she fell when visiting her granddaughter but I believe if she stayed at home, she would have fallen there

The blessing is that she didn’t fall at home, she fell where there were people able to immediately help her, her family was able to surround her, support her

At home, if she fell, it could have been days before someone knew she was in trouble, days

The alternative is so horrible for me to think about, I won’t even venture to create a picture with words

The fact we have someone with Matt now all the time gives me a great deal of comfort

But I still worry about that cataclysmic event, what it will be, when it will happen……

And will I live with guilt once it does, because we know it will, that I could have done something to avoid it?

Or will I live with guilt afterwards that I should have done more to let his last days, weeks, months, years be more exciting, have more life in them?

I have been telling friends that I want my tombstone to read “She Tried”…….now I am thinking I want it to say “She Tried, Really Hard”

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