From whence my help shall come

A lot has changed since then. Since then, her forgetfulness diagnosis has received an upgrade to severe dementia; vascular dementia, not Alzheimer’s. Vascular dementia is caused by uncontrolled hypertension, for the most part. Approximately 20% of dementia is classifed as vascular in origin. While she had been prescribed a hypertension medicine, on days when I’m weary and angry about mom’s disease, I blame her deficits on her former primary care physician…something I’ll write about later. But this morning, at the wee hour of 4 a.m. I awoke to feeling guilty that I’d not taken mom to church yesterday. I was very tired, having not slept well the past two nights. I’d also exhausted myself the day before, sanding, priming bathroom walls on one of the hottest days of the summer.

I lift my eyes to the hills…from whence my help shall come. While a favorite Psalm, my sarcastic, broken self wonders… We hire birthday planners, wedding planners, funeral planners. We spend millions on greeting cards to say what we think we can’t–but probably, likely, most of the time, can. Where are the planners for celebrating life in transition–that nebulous,  wrenching watermark–the stain–of announcing the coming of dementia. Whose throwing the shower party for everything you won’t need in the assisted living facility studio apartment, surgically downsized from a home teeming with a lifetime of memories and familiarity? Where are the advertisements for all the clothing you won’t need because you will often forget to change your clothes? Where are the quaint magnets to remind you to buy your Depends but not your hearing aid batteries because you can’t remember that you wear hearing aids? Where are the Dementia for Dummies books. The sappy, trite “The Secret” books promising winnings, achievement, if we only smile, envision our dream, employ a life coach to devise and master our goal, our potential–our goal that dementia will be displaced by witticisms, debate, quick analysis of a recent election, and zumba lessons? Where is the QVC show for no-longer-fashionable set who needs adaptive clothing with velcro buttons and hidden but open backsides for the incontinent wheelchair bound? Where is the QVC, manicured doll-face with the 1 inch glitter nails, offering three monthly payments for a walker buddy bag to carry keys, tissue, can’t-part-with-dusty-broken costume jewelry, and out-of-place stuffed animals…familiar, knowable souvenirs of the life well lived?

There’s no plan for this party. There’s no one buying new ball gowns for this party. No new matching purse. No new suit coats and silk ties. This party requires bull dozers, trench hoes, and hard hats. Wordy fluff, free shipping, and book tours won’t buy us a lick of love to do the work of carrying, loving, listening, breathing, and hoping that carries and holds our loved one, oft times clumsily,and our circle of loved ones through this daunting, daunting path.

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2 Responses to From whence my help shall come

  1. kathym says:

    It’s so good to have you here, Meg. Your story of the first Sunday reminded me powerfully of the shocks I’ve absorbed during this walk through Dementia Land. Oh, Mom can’t do THAT anymore?! Yesterday I found a plastic bag of wet Depends stuffed up above the microwave, and then a piece of used toilet paper shoved in a box of plastic gloves for the aides to wear when helping Mom in the bathroom. Oh, Mom doesn’t know where to put toilet paper after using it anymore?! Each time, I painfully accept the step down in ability, and we go along until the next little failure of her brain.

    • megsp says:

      Expectations. It’s all about abstaining from expectations and instead being in that cliche but profound moment of being in the world, or as my sister Mary comments, about remaining on the shore (with unrealistic expectations) or going out into the storm wherein lies the calm, the hope, the horizon, and an intimate space.
      Happy New Year.

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