From Denial Toward Acceptance (Still an Elusive Destination)

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by caregiver, Margaret Toman

For the past 15 years my mother and I have been under the tutelage of Alzheimer’s Disease, a malevolent force which has actually been with her much longer than that but I was too obtuse, and she was too confused, to comprehend. She will turn 101 this November, still a strikingly beautiful woman. Our family is just the two of us and our fat cat, Velcro, who cares for us both.  My mother attends adult daycare, which allowed me to work until I lost my job three months before I turned 65 and which now allows me to engage with the community during weekdays and to care for her at nights and on weekends.

We live on love, which stretches easily from month to month, and on social security – which doesn’t. Caregiving itself has not been as difficult for me as peripheral issues: insurance mix-ups, dealing with physicians, national drug shortages, body disposal issues at time of death, continuing financial crises and always, the unexpected.  I have traveled with my mother through every stage of her illness, gradually lowering my expectations, adjusting hope, fine-tuning empathy and stumbling from denial toward acceptance, still an elusive destination. I am growing plump and grey, like Velcro, but without her vibrant purr.  

I would do it all again. Caregiving, for all its difficulties, is less dirge than melody – the discordances offset by grace notes that sometimes rise to the level of requiem in the most difficult moments of caregiving.  My mother no longer speaks, but she eats and drinks, kicks her feet to music and responds to my love. She is still a celebrant in the deepest sense of that word, enlightened by a visceral joy in living.  She is a stellar human being and my shining star. In one way or another we have traveled together for nearly 70 years. Why stop now?

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