The ABC’s of my caregiving journey

Somehow to me, the alphabet represents something that is changeless, predictable, timeless, and full of patterns.  D always comes before E,   and S always comes after R.    I like that way of thinking.  Maybe it is my autism but I like sameness but at the same time the ability to create within the sameness.  So I got thinking about a Caregiver’s alphabet – specifically for me but of course it would apply to other caregivers as well.  Right now my world feels like it is totally out of control, and spinning downward into a black hole.  Maybe devising an alphabet will bring some order to my outlook on life.  Is it possible to wrap caregiving up into a neat little package??  I guess that is what I am attempting to do with my alphabet.  So here goes.

A – my autism and my Mom’s.  Acceptance   Accountability   Anxiety, advance planning, afraid,

B – books, blanket,

C – compassion, care, compromise, coping, connected, control, committment, comfort, cats, crying, chores, consistent,

D – inevitable death, duty, distress, daily, decline, decisions, disease, days – good and bad, depressed,

E – energy or lack of it, emergencies, exhaustion,

F – faithful, failing, favor, full-time, flowers,

G – grief, giving, God, grab bars,

H – help, hospice, home, an honour, heaven,

I – independent, insecure, insensitive, intrusive, incapacitated, administer insulin,

J – joking, juggling everything, journey, joy

K – keeping well, kleenex, kiss,

L – love, loneliness, loss, laughter, listen, longing,

M – MOM, meals to make, medications to manage, miss, manage everything,

N – naps, never-ending, nurses, dreaded nursing home,

P – patience, PSws, panic, power struggles, perseverence, positive attitude, palliative

Q – quiet, questions,  quest,

R – rest or lack of it,  resilience, reliability, reluctance,  regularity, run errands, rally, retreat,

S – silent screams, sickness, sadness, sorrow, sapping, sleep-deprived, special days and events, stubborness, shortness of breath, sameness,

T – thankful, trust, taxies, total care, tired, treats,

U – unexpected, uncertainty, unable,

V – vulnerable, visitors, no vacation, vitamins,

W – wellness, wisdom, wishes, weather, wistful, water, weak,

X –

Y – yell, say yes,

Z – zzzzz – always tired, zapped,

This is just a partial list.  I plan on revising this particular post as I think of new words to add.  It’s oddly comforting to see this list.  I know it probably doesn’t make sense to most but to see my life as a caregiver laid out in a list of words somehow puts some order into a life that is very disorderly.   Life happens in moments, not days or weeks when you are  a caregiver.  Everything can change in the blink of an eye.  So seeing this list somehow solidifies my life a little bit and even a little bit is a good thing right now.

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