Uncle Lewy

Living out loud with Lewy Body Dementia

Rollercoaster

If this is anything, its a rollercoaster ride

Sunday, Matt was dancing with family having a great time

Tuesday, I called 911

Having trained with the fire department when I was a beach lifeguard, I have a tremendous amount of respect for those called to 911 response duty

So I don’t call 911 without considerable deliberation, maybe too much, but we are working through this

What happened?

Matt was slow to rise out of bed Tuesday morning, not unusual

Monday, after dancing, he slept pretty much the entire day

I did stuff, at the moment I don’t even remember what I did, just other things as Nora was here taking good care of Matt

Monday evening I paddled, it was a cooler evening than we’ve had for the last few weeks

So Tuesday, when he rose from bed, about 10:30 or so, he was confused, a bit more than normal, but not off the spectrum

When I did get him to settle down to eat the breakfast I had prepared for him, he did so, then was anxious to get up again

When he stood, took a few steps, his knees gave out from under him, he toppled a chair on his way down, which was good in a way, it lessened the falls impact

I was right there, calmed him down, helped him up, stood holding his arm as we tried to determine what he needed to do next

He needed to go to the bathroom, so we walked in that direction

His knees failed again

So I grabbed a chair, had him use it as a mezzanine level before re-standing

Note, he isn’t loosing consciousness like the faint on Friday (did I tell you about that? I forget)

I soon realized that this was more than I could handle, by myself

I needed another adult in the room to help me think through this crises I found myself in the center of

I called Corny, she was available, we concluded he needed to be taken in to be evaluated, his behavior unusual, concerning, getting harder and harder to manage

I had clarity, very very clear, that there was no way I could manage him from the current state to dressed, in the car, to ER myself

There was no other choices in my mind…..we had to call 911….so we did

As soon as the medics arrived, I pulled a stack of neighbor credits out and asked the neighbor, Coco Channel’s folks, to come get Sheba so she could hang with Coco while we dealt with whatever this was

Mike our nephew came over to lend a hand, it was pandemonium when he arrived with the dog barking, the ambulance in the driveway, a half dozen med techs running around, the neighbor coming over wanting intel but being asked by me just to take the dog….it was crazy

It was an all day event in ER, blood draws, electrodes, urinals……nurses, doctors trying to sort things out, find out why we brought him in

All the while, I am wondering if I over reacted……but I felt I had such clarity I needed help

Lori, bless her heart, didn’t ask, she just showed up at the hospital, waiting in the waiting room till she could help, knowing I didn’t know really what was needed….that it was crazy

Having here there, by my side, being in this moment of unknowing…..waiting….managing Matt’s anxiousness, tugging at monitors, trying to get out of the bed……was unquantifiably valuable, priceless, so so helpful, the blind needed another blind person just to be there in that moment

She brought back some muffins, cookies and a protein bar at one interval, we ate on that for both days, it fed not only Matt & I at junctures but Corny and others too when the moment called for it

Eventually, they determined what could have been the culprit, excess urine retention

Little did I know that can make someone delirious, a person with normal cognition, so add that to Matt’s existing and we had a mess for sure

There was absolutely now way I could have resolved that at home (I’ll spare the blog about how they solved that)

We had a consult with an attending neurologist at the local hospital, albeit remotely via rolling screen

She wanted to rule out things that an MRI would tell, so we had to make a decision on that as he’d need to be sedated and sedatives are not recommended for his condition because of the chance it might increase hallucinations and delusions

The docs at the hospital, several of them in consult, felt that a one time use benefits to get the MRI to rule out things they were concerned about outweighed the risks, so we moved forward

The MRI didn’t reveal anything nor did any other test that would have made sense as the culprit……the only thing that was eyebrow raising was the excess urine retention

Since the sedative needed time to wear off, part of the agreement was Matt would be admitted overnight so that if the adverse affects were to come into play, I would have the full support of trained hospital staff to assist him, me, to get through it

Nelia and Terri came by to raise our spirits, provided blankets and pillow for me so I could stay the night by his side

The next day, Corny and Jim came fairly early and was there as we worked our way through the process to continue the evaluation and to get released so Matt could go back home

It was a long, very long, 30 some hours

In the midst of all this, on Wednesday morning

Breakfast was served, it was heart shaped cheerios or some such cereal

I couldn’t help but pause and appreciate it

I looked at Matt as he was looking, staring, at me

“You are MY person” I said

He smiled, kept looking at me, through me, to my heart

We did make it home, Matt did a lot of sleeping, sound sleeping once he was home

Our journey continues as we have follow ups and in home health services have begun again

I am still recovering……oh, and the party for today, it was cancelled, ain’t no way we were in position for that after the events of Tuesday and Wednesday

Did I tell you in the midst of all this, we realized the pool guy stopped showing up a month or more ago so the pool is horrifically in need of a shock, the water pump in the water tower blew out so we haven’t done laundry in a week or 2……and there is more, but I don’t want to get into that now

I am just, we are just, trying to recover to make it through today

Needlesstosay, I am tired, bone level tired

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2 responses to “Rollercoaster”

  1. mentalitysensationallyfc14c86ab9 Avatar
    mentalitysensationallyfc14c86ab9

    Oh, CJ!

    How wonderful that you have friends and family to be there for you and Matt. It speaks so highly of the two of you and how much you are both loved. ♥️

    Cathy Stierhoff clstierhoff@gmail.com clstierhoff@gmail.com 415-331-5578

    Liked by 1 person

  2. Michele McAteer Avatar
    Michele McAteer

    Wow Cj and Matt, that’s alot 😳 😢. So very happy that beautiful soul named Lori is there for you. Love you. 💞

    Liked by 1 person

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