Committed to memory: Three vital life lessons from a caregiver

Ever revisit a photo that speaks a million, not just 1,000, words?

Every second Thursday of the month, I pause at this image of a couple I met in the fall of 2006 … a beloved husband who had been diagnosed with Alzheimer’s disease and his devoted caregiver wife. Revisiting them gives me strength and courage to offer support for a new generation of dementia caregivers who gather with me for 90 minutes at the Alzheimer’s Association office to talk, listen, laugh, cry, hug … and be reassured they are not alone …

Molly was caregiver extraordinaire … a source of comfort for other families battling what she described as the “heinous disease we have in our midst” … a reliable smile and warm laugh that lingered long after you encountered her … a rare soul who loved life and her precious Joe so very much.

She became one of my dearest friends, not only because of what she shared about the impact of Alzheimer’s for a book I was writing at the time, but also for the voluminous emails we exchanged in a continuous conversation about life at its most precious roots. I revisit that correspondence when I need a “Molly moment” … and how I wish she had been here with me the last few years as I struggled with the loss of my dad and mom.

In recent days, I’ve reviewed those words in search of comfort and rediscovered many life lessons in a new light. The theme of caregiving jumped out at me this time, so I felt the need to share some of Molly’s most honest and poignant words about being a caregiver, whether it’s for a loved one with dementia or any health challenge. These also apply to those many stroke and brain injury caregivers I’ve met all over the country …

Here is just a small sampling of “Mollyisms” we all need to heed:

I have decided that lots of things will be missed along the line … just can’t do it all!

Ain’t that the truth?!?! Some caregivers suffer from perfectionism, thinking they have to do everything AND exactly right at the same time. STOP it now!!

As a recovering perfectionist, I think back to what my mom-in-law asked me years ago, whether my house was perfectly neat OR if I had done something that made a difference in someone’s life or the world. I’ve always selected the latter … the house has learned to wait.

And while caring for my mom the last 10 months of her life, my housecleaning skills were not as perfect as she would have liked, but they were good enough to get by … so that life didn’t pass us by.

Pay attention to this critical note:

There is never “total sleep” for a caregiver … there is never the chance to wake up refreshed, stretch, yawn, watch the sun beams stream through your dirty windows and think — Ah, morning, I slept well and now on to the day ahead!!! A caregiver sleeps with one eye open, ears listening, and heart pounding, and even sometimes tears flow silently all through the night!

The emotional and physical toll on caregivers is staggering. I’ve witnessed it in so many individuals who reveal the stressful challenges through their weary eyes, loss of or excessive appetite, missed medical appointments for their own health, deep and painful loneliness and isolation … and so much more, not counting the harmful loss of sleep.

And that brings me to the third of Molly’s messages for caregivers:

Why is it that I love to give to others but being on the receiving end is so touching that it moves me to tears? Getting old is really bringing that on and perhaps knowing that our time is so precious together and the moments are dwindling brings it on!

It’s so hard to ask for help … and despite our technological advances, we still can’t read each other’s minds. As I tell caregivers and survivors alike, we humans are wired to take care of ourselves and others. We hate to ask for help … and so many suffer in silence. We put everyone ahead of ourselves … and so many lose themselves in the process.

Speak up! Reach out! And if you know a caregiver, give, give, give a little of yourself to them!

Caregiving can make us stronger. Giving brings out the best in us. I know I am a wiser, more compassionate person for having taken care of my mom for 10 months … being with my dad the last 30 hours of his life even though he was considered “brain dead” … overseeing the end-of-life care for my dad-in-law more than seven years ago …

And I only survived by reaching out and letting others in … learning from my missteps and raw human emotions. Molly taught me so much … in how she lived and how she left this world … a body tragically worn out by caregiving … Still missing her after nearly nine years.

I am reminded of Molly’s most powerful message:

The woman looked at me and said, “Molly, I don’t know how you do it? I know I couldn’t do what you do.” I looked her straight in the eye and my response was, “Oh, you could do it all right, even though there are some really rough times. You are driven by a thing called Love! You could do it, if you really loved the person.”

Oh, how she loved her Joe, who survived her by four years.

Molly and I simply fell in love with each other in the few years we had together. She thanked me for loving her:

Thanks for your LOVE – the more you give it away, the more you have!

Thank you, Molly. I always pass your photo when I leave the support group meeting, very sentimental about missing you … hoping I continue YOUR mission to comfort and lift caregivers ….

Or I know you’ll find some way of letting me know if I’m not …

"What Caregivers Need"

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