Wednesday, November 14, 2018

Committed to memory: Three vital life lessons from a caregiver


By Monica Vest Wheeler


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 …


Sunday, November 4, 2018

Three views to photograph on the first birthday in heaven


By Monica Vest Wheeler

Just how big of a camera lens do you need when you're shooting earth from heaven?

I'm imagining my mom on her first birthday in heaven, November 4. She's not snarfing down a birthday cake. She's photographing the world from the most glorious perch possible. Now, that's THE best way to celebrate!

Is she carrying an assortment of lens … or just packing a zoom like I do when I'm not sure where my photographer's eye will take me? Usually I rely on just one because my neck can only take so much weight and strain. Thank God she's not in any more pain …

Her eyes fill with excitement as she gazes beyond the rainbows … the rugged mountains and serene valleys … the mosaic of farmer's creative dirt and plant patterns … the winding shorelines where land and water play daily … the geographic directives drawn by humans to separate and unite us …

I'm sure, like me, she relies on auto-focus to not miss a thing … yet, I know she's also extremely patient in search of THE moment to unveil before her so she catch it for all eternity. It's that unexplained instinct when you know you're going to witness magic, even though you're not sure what it will be.

Now, Mom, let's say you've got that zoom. Make sure you get all three perspectives, in no particular order:

Wide angle — you need the big picture to deliver the observer to the overall scene …

Normal — the view we see with our human eyes without the mechanics of the camera lens …

Close-up — the tiny details brought to life by the lens that we may have not noticed in our casual observation …

Yes, you should have been a photographer who traveled the world … followed your passion and heart … I should have encouraged you more …

Oh, why didn't we at least run away and do that for a weekend together?

We thought we had other priorities … but oh, how mistaken we were …

What did you photograph on your first birthday in heaven?

Did you get the wide angle of me driving across the country … past the pageantry of fall's golds, oranges and reds …

Did you get the normal view of me hugging your sister as we said how much we loved each other and missed you … and wished you happy birthday …

Did you get the close-up of my tears … sprinkled throughout the day …

Happy birthday, Mom … I love you …