Today was a difficult day, says Pooh

Do you want to talk about it? Asked Piglet

No, I don’t think so

That’s ok, says Piglet, I know what difficult days are like. I quite often don’t feel like talking about it on my difficult days either

But goodness, Piglet continues, difficult days are so much easier when you know someone is there for you. And I’ll always be here for you.

As Pooh sat there, working through in his head his difficult day, while reliable Piglet sat next to him quietly, swinging his little legs, he realized his best friend had never been more right.

I saw this as I scrolled things this am

It came from social media, so my urge to fact check was elevated

But who fact checks Pooh? Sounds like what the duo might say, plus I like it…..can relate

As things have settled down after the holiday, I have had some difficult days, some Pooh days

Anger has risen up in me which I have had to deal with

Triggers? realizations of how my life has changed because of this disease, not in directions I ever imagined

Everyone else was talking about going out to dinners with friends at restaurants, spontaneous hangout suggestions……things I just can’t do any more because of my caregiver responsibilities……I could go on and on….not needed, the point is as I heard these comments, anger was welling up, volume getting louder and louder, anger was making me have a difficult day, or 2

Then fear of my ability to be able to be what I needed to be to be successful as we move into a new phase of this

The future looks like much more hands on care…….his ability to independently navigate the basics of daily living is getting challenged

Order of dressing, working a belt buckle, underwear, putting shoes on….long list, stopping here

The point is I haven’t been in a place before that I needed to navigate this, fear bubbled up that I can’t….maybe I don’t want to do this, I have zero experience at this, so much of this, all of this

How do I push thru a place I may not want to do what’s needed, what if I fail? There are lives on the line here……

I just wanted to run away, screaming, really really loud

Blood curdling, deep gut based, loud as hell

It’s a very very hard place to be

As much as I try to remain positive, be grateful, these times are hard

I feel stuck, imprisoned, devalued, hopeless

The rain adds theatrical support to the depressive feelings

Just before Christmas we met the Sutter in home care team, including a social worker, Cleveland

On this difficult day, I called Cleveland, asking how do I know how to navigate this period? How do I know when he can’t dress, clean, toilet himself enough to say he needs professional support for these daily living activities beyond what I can do? When, how do I know when he may need to go, dare I say, a institution?Where are the bright lines?

How transparent should I be, can I be, with Matt about how I am struggling too?

Cleveland came over yesterday

So did Cornelia, she was our Piglet, sitting with both Matt and I as we navigated this difficult time

In the safety of both of them, I let it all out, my fear I don’t know how to be successful in this next period of need, this disease has taken away my ability to be a good wife, everyone wants to throw me emails with web links, I just need someone with more knowledge, resources, to listen to my needs, help me fix this!

It was a hard, stressful conversation

Matt’s blood pressure, taken afterwards by the OT that came, was off the charts, like I have never seen, off the charts, ambulance calling level

We should have checked mine….. but we didn’t

I wish I could really know what it is like being Matt now, then, I feel, I would know better what I should be doing more of, less of…..

That VR Helmet of a post months back

I can’t say we solved all the issues, answered all the questions, but I felt heard, a bit better, heard by someone who could help me solve my problems, someone who really cared

I tamped down the urge to run away fast……not fully resolving the urge to run, but atleast the volocity level was lower

It was clear to me that the live in care giver model was something we both liked, worked for us

But our current resource was questioning, significantly, if they could, wanted to, provide us a new resource after their original placed individual departed

That departure was a huge loss…..hope was high to have them replace, repeat, but they were appearing to back out, so disappointing, so frustrating

So a big next step is getting back to where we were…..having a live in…..but they have to gel in our household, a lot of fear that fit would be hard to find reved back up

If being heard for a minute was of value, this clarity was also super valuable, clarity that replacing the live in was what we need, that there might be other resources we could approach who might be options to our original source

The clarity was valuable….even though it signals a shitload more work, more risk

That’s where we are…..the next chapter has yet to be written