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I've been swimming these treacherous waters for over a decade now - long before many of my dad's caregivers were old enough to drive. I think sometimes people get the impression I pretend to be happy, this habitual smile glued on my face. After all, this is a horrendous disease - unthinkably cruel. Yet, amazingly, I truly have managed to find a current of contentment within the storm.
I view it as making peace with what will never be - my father is inexplicably changed forever. If I am to have a relationship with him, really connect, then I must learn to leave my expectations at the door and enter his world. It's also finding humor amidst the challenges. My father seriously gave away his eyeglasses, which incidentally took me literally weeks to repair? That's hysterical!
We learn it’s not about us anymore.
We also acknowledge that greater responsibilities were never known. My dad's needs are on the forefront of my thoughts on a daily basis. It's a burden which cannot be adequately anticipated or managed. We quickly learn to wing it or we drown - I've found no in-between. This is all to say, I have my moments too. To describe the past few days as rough would be a monumental understatement.
As hard as I try to stay above this current, there are times it ruthlessly pulls me under and spits me on the shore, lifeless and discouraged. This is where I've found myself today. If you're looking for some encouragement or a shot of humor to get you through the day - you're well advised to skip this for now and read this:
You're still with me? Don't say I didn't warn you! After a challenging April, complete with an unexpected trip to the hospital, May was gloriously pleasant. Dad had more energy, was much more alert, and even wanted to take the long road back to the house occasionally. (Which consists of walking around the kitchen to get to his room.) Hey, we take what we can get and celebrate the small victories!
Overnight everything changed - an apparent minor stroke, then some sort of virus which found him back in his wheelchair, lethargic and frail. Too often after we experience a little patch of what we have learned to view as bliss (which in reality is wrought full of challenges as well) this disease takes our calendar, rips it up and spits it out.
I went up to feed my dad breakfast this morning - gone, at least for the time being, are the days of him feeding himself. Perhaps I could get some extra fluids down him and see that his day got off to a good start. After all, the past two days have been bumpy, to say the least. I arrived to find Dad in bed, helpless. He looked up at me with his ocean blue eyes and uttered these words, which ripped my heart out.
"Help me, Mama!”
That's been my primary goal for the past eleven plus years, since the day I walked in the bank and acknowledged my father could no longer manage decisions affecting his life. Yet I can't help him - not on my own. I can't scoop him up, as I did my children, and rescue him from dangerous situations. His care requires too much strength - more time and energy than one person can provide.
It can be a helpless feeling. Loss, followed by acceptance of a new reality is common for us. Moving trucks and ambulances frequent our loved ones' home. This disease forces us to experience these realizations. We are in a constant state of change and we know the overall prognosis will never get better.
The other day one of my friends and I pulled in the parking lot at the same time - our unspoken lunch date. We've become a family at Memory Care - the time we spend together is priceless. Yet the thought crossed my mind as I walked through the door with my friend to feed our dads: "How much longer will it be this way?"
These days are unspeakably numbered.
We are dealt losses, challenges, physical issues, financial woes, stress, and fatigue on a daily basis. Despite our best efforts, things happen which are beyond our control. Requests aren't carried out, communication with staff breaks down, care is overlooked, our loved ones struggle mightily.
As I lay breathless on my rock today, attempting to regain my strength in order to endure more ruthless waters, I am reminded of a monumental truth. This disease cannot be survived alone. We need each other - to lean on, to draw comfort and understanding from, to pick us up when we fall down. I am immensely grateful for those who are holding my head above water today. Thank you - you know who you are!
Grab ahold of some lifelines - you're going to need them!
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