…But I have to write.
I found my courage.
It was right where you left it for me.
I love you always.
…But I have to write.
Mom is gone.
Once again we are sitting in a clinic waiting room.
There have been many, many such waits in the last 17 years… Many, many times we have sat here with other families, chatting away the idle minutes while we listen for the children’s names to be called.
We are at Outreach today. The annual Hospital City “roadshow” where the doctors, nurses and technicians from Hospital City set up camp in a local teaching hospital. Today, we will drive no further than The Greater Metro for Twinks annual springtime appointment.
This is, as much of the last 90 days have been, another bittersweet moment. Someday soon I will summon the strength to document everything here, but for now, this brief missive from the field will have to suffice.
In January – in fact, the day after my last post – my Mom had a large stroke, this one so serious that at one point we believed she had less than two weeks left. We spent a long, terrible night in the ER, only to make our way home through one of the worst blizzards in recent history, with Mom in an ambulance behind us. The EMT’s helped us shovel out the front walk so we could get Mom back in the house. I was never so cold and tired at once in my life.
We tried – as hard as we could – to care for Mom at home, but it soon became apparent that we needed more help and equipment than could be brought in to our home. So, Hospice helped us transfer her from home to a local nursing facility, where she was until a week ago. During this time, she slowly regained the ability to first sit, then stand, and finally walk again. But she wasn’t as before. She was clearly still suffering side effects from the stroke, the inability to feed herself being one of them.
She also became increasingly anxious and agitated. Nothing worked; no combination of drugs, no amount of time that I would spend with her could quell the rising tide of her anxiety.
Things escalated when a resident punched her, and then later the same day, another resident tried to throw a glass of ice water at an Aide that she was mad at… and most of it landed on Mom.
It was all just too much in one day. She became so upset that there was no calming her. She was moving non-stop, seemingly searching for who-knows-what. Always pedaling around the NH, ceaselessly going up and down the halls, day and night.
And so, last week I made a phone call that I had prayed never to make… I called the local Geri-psych unit to inquire about admitting Mom for treatment.
Today is also Mom’s birthday. She is largely unaware now; whether she is at home, the nursing facility, or the Geri-psych unit, she seems to not notice. Her beautiful blue eyes are devoid of emotion. She does not know us, or realize that we have a connection to her.
But for right now, this moment is bittersweet because it likely the last such outreach Twinks will ever attend. There will probably be one more final trip to Hospital City, to say “goodbye” and “graduate” from the Shriners Hospital System.
And then this part of our lives will be done.
I have to go… The nurse has called Twinks name. It’s time to begin this last visit, this final chapter.
Bittersweet times, indeed.
…is when I go a little crazy.
I am tired all the time now – Mom can no longer be left alone. At all. Ever.
The exhaustion is grinding. It eats at my sanity, it erodes my body.
TW & Twinks are showing the effects, too. We are all snapping at one another; we are all perpetually waiting for our turn to sleep.
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For the last two weeks, we have had what TW euphemistically calls “hired guns” every night; these are trained healthcare workers who sit with Mom every night, Monday through Friday. They are lovely ladies; sweet, caring, professional. But they are also here only overnight – at $22/hour, we really can’t afford them, but we can no longer afford NOT to have them. Twinks has school… TW has work… and I have to get a little bit of rest, even if I have to *pay* for it.
Most nights, it crosses my mind at least once that I am *paying* someone $22/hour for the privilege of sleeping in my own home. I lie in the dark, doing the mental math.
The numbers are frightening.
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The weekends have been mine. Saturday and Sunday nights, I am up all night – sitting next to Mom’s bed, making sure that she is OK. The job is relatively simple; make sure that she doesn’t try to get up out of bed unassisted. Help her in the bathroom. Keep her safe, and comfortable. Let her know that she isn’t alone; that someone is there with her in those small, dark hours of the morning…
Make sure that she isn’t scared.
Because I am scared enough for both of us.
Yep, I’ve changed things around.
Poor TW says that I like to move the furniture around just to drive him nuts.
I have always been this way… I like to move things around a bit, see what they look like when you put this over there, and that over here. Move the sofa to the other side of the room, and the link list to a whole new spot on the blog.
The new template, the changes are just my way of welcoming a new year, and looking forward to Spring.
I didn’t realize how much I *needed* to look forward to Spring until tonight. I need the hope and joy that come with the soft, new grass, and the eager daffodils.
I need the renewal that arrives with the baby birds, and their Mama-birds, eager to feed them. I need to refresh my spirit and my soul with the rituals of Easter, and the delicate, shell-pink sunrises that creep up through frosty dawns.
I need these things now, because my Mom is continuing her descent through dementia. I need the feeling of new life, of hope and of joy to counterbalance the sadness and despair. I need a shot of fresh green leaves and tiny defiant blossoms to shore up my belief that life can, and will, go on.
So, here’s to new years, new beginnings, and pushing the furniture around. Shake out the cobwebs, clear out the dustbunnies, and spruce up the ol’ blog.
Spring *will* come again.
Around midnight, tonight, I will quietly open the front door, and step out onto the porch.
Because it is Christmas Eve, the world will be quiet, and still. There is no traffic noise; everyone is snuggled in their beds, waiting for Santa.
The lights on the houses will sparkle up and down the block, winking and reminding us of our neighbors good cheer.
The warm, fragrant air from the house will spill out the open door, and circle around me, filled with the smells of Christmas: Turkey, pies, cookies, and coffee.
The breeze on my face will be cold, but the air will be fresh and sweet and pure.
The night sky will be dark; I won’t quite be able to make out the stars. Maybe it is the light from the city below us in the valley… maybe it is the festive Christmas lights up and down the block. But I will look for the Christmas star anyway – the ancient light that shone over one little crib, over two thousand years ago.
As I look toward the heavens, I will think of Mary & Joseph. They were so tired and scared, and so far from home.
I will give a prayer of thanks for the sacrifice they made for all of us. For the child that was not just theirs, but ours as well.
And I will give a prayer of thanks for you, my friends. For those of you who walk beside me on this journey, and who know my own exhaustion, fear, and pain. You are among my greatest gifts, this year and every year.
Merry Christmas, my friends.
I still can’t believe that we are there; at that point where the Doctor looked at me, and said “I think it’s time to call in Hospice”.
In my heart of hearts, I knew it was time. Probably past time; we have been making heroic efforts to care for Mom on our own for a long time, and it was the catastrophic reaction that finally tipped the scales.
Imagine, if you can, trying to care for someone who is scared of her own poop. Who is now scared *to* poop. Because she just can’t understand it anymore.