3 min read

Hello, kindred caregivers.

It’s now June, the month dedicated to Alzheimer’s disease awareness. And June 21 — the day with the year’s most sunlight — is called the Longest Day, a metaphorical reference to the 24/7 demands of caregiving for a loved one with dementia. But I’ll gamble that when friends strike up the barbecue and children gleefully play in the extra moments of sunshine, we caregivers haven’t a clue what day it is. We live in the world of Alzheimer’s, a place of limbo where grief and loss consume us ’round the clock no matter how long the sun may shine or what the clock hands may say.

It’s gratifying to see such public consciousness on the subject of Alzheimer’s. I believe folks have a basic  knowledge of the issues, but unless someone has carried this load, it’s almost impossible to grasp the emotional horror and disbelief of watching the personhood of our loved one ever so slowly disintegrate before our eyes.

It is the cruel, unrelenting march of an interminable, terminal illness. Alzheimer’s progression leaves caregivers socially isolated. Scant time for self-care negatively affects our health, thus the moniker the Hidden Patient. We’re at risk of a myriad of serious health conditions up to and including death, termed caregiver syndrome.

PTSD is prevalent, but caregiver trauma is commonly misunderstood with symptoms dismissed or misdiagnosed, leaving trauma untreated. Physical and social isolation, lack of resources and the unpredictable duration of the illness can lead to suicidal ideations. Folks, this is abominable! Why do we allow this to happen in our nation of abundance?

I am a firm believer that caregiver health will improve once the complex emotions of caregiving are given greater light. I, for one, desperately needed to know my confusing jumble of emotions — and even my not-so-pretty thoughts — were an expected and normal byproduct of grueling, never-ending caregiving. I craved release from my feelings of guilt and self-doubt. I needed to know I was doing my best even on my worst day. I feared judgment by those unfamiliar with caregiving’s challenges. And above all, I prayed my husband knew that my love for him never wavered.

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It’s time to purge Alzheimer’s remaining stigma and elevate our focus on caregiver emotional health and support. It wasn’t until my own caregiving journey ended, and I could reflect back with perspective, that I understood that “caregiver land” has no judgment or guilt. The emotions we feel and the experiences we endure are normal and universal. We must grant ourselves grace. We must give ourselves time to heal. We are in long-term grieving, doing near-impossible, caregiver-contortionist work with no end date in sight. We are in heartbreak, each day furthering the crack.

So on this summer solstice, my caregiver compatriots, I salute you. Let us stand tall as the mighty survivors that we are. We are proud of our work, both a privilege and a sacrifice, that can bend our soul but never break it. We are one with the untold numbers of silent, caregiver heroes who willingly give our all to our loved ones, give it again, and yet still again. Know you are magnificent.

Let all remember the telling words of Rosalynn Carter:

There are only four kinds of people in the world —
those who have been caregivers,
those who are caregivers,
those who will be caregivers,
and those who will need caregivers.

Let’s lend a hand to a caregiver today.

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