|Posted by Tammy L Boehm on May 17, 2019 at 10:55 AM|
I woke up this morning at 2:00 with a knot in my gut and a roaring headache. After slamming a glass of water and popping a couple of Bayer I flopped around in my bed until I was able to get myself in a position where the banging sensation in my skull would allow me to sleep just a little longer. It’s almost 12 hours and several aspirins later and still the monster in my cranium bangs away. God only knows what causes the little brain gremlins to rage as they do but they are much more frequent than when I was in the land of green chile and tumbleweeds. Could be stress. Could be pollen. (my car was literally yellow the past two days. Yellow and fuzzy.) Whatever it is, headaches make the commute almost intolerable and the work day a serious ordeal. I truly miss being 15 minutes away from an office with a window and green chile breakfast burritos en route.
I read this article the other day by a woman named June Andrews and she used the term “toxic positivity” which has stuck with me (much like the fat around my middle from all those burritos) and I thought of the multiple days I’ve risen to prepare for my daily routine, asking only that I be afforded time and space void of banalities and chatter only deal with the matriarch as she knocks on the bathroom door, asks me where I work, stands exactly where I need to be to pack a lunch etc. Then there is the hour commute peppered with road construction and Nascar wannabes, the day at the office which is like no other office I’ve ever experienced, the hour commute home and the instant I get in the door – the matriarch goes on some type of loop. It sounds trivial. I know it does. But I am a private person. An only child. An introvert. And I have no control of my personal space and my time. Add dementia to the mix and often it is so difficult for me to put my hand over my mouth and walk away, especially when some well intended type tries to spin the reality of it all with trite isms like “it’s only a season” yada yada yada.
The hard truth of it is this: dementia takes the personality and the memory of the person you love and shreds it. One day your beloved is baking cookies and telling stories about her family and the next she’s trying to eat a napkin and swearing that the girl who sleeps with her wet the sheets. (sidebar: the sheets were dry and the matriarch sleeps alone) The hard truth is you either deal with it – and what it does to the person you love or you turn that person over to “the professionals” because you can’t deal with it. And you watch as any legacy that beloved person may have worked and sacrificed for YOU is eaten by the cost of professional care.
What I know in my heart is that we are slowly, inexorably saying goodbye to the matriarch. And she is slowly being robbed of the ability to deal with her own mortality, to say goodbye as well or even navigate her increasingly difficult world because we as her caregivers have to impose restrictions to protect her from herself and the shredder in her head. We don’t need a smile and an eight step plan. We need real knowledge. We need additional pairs of hands. We need access to professionals who won’t burden us further with medical bills. That is our reality.
I would never tell anyone going through the loss of a loved one that he or she just needed to be positive and that it was wrong to run a gamut of emotions. I don’t expect those who know me to tell me that. Dementia is a wrecking ball colliding with a stained glass window…in….slow….motion. The pieces, even if the colors are still pretty – will never go back together. And the family shouldn’t be guilted into silence while witnessing the destruction. We aim to protect her dignity but to lie and say that our positive attitudes and our sunny dispositions are what keeps us moving forward is a lie. Life is brutal. Love is messy. And I? I am a warrior.