Monday, December 3, 2018

We're all at risk of falling and failing

By Monica Vest Wheeler

Yes, we're in the period of fall risk … my husband Roger from his knee replacement surgery on Friday and me … just being a klutz. No, neither of us has fallen … though the cats are just waiting for a great story to tell on Catbook …

I also realized that we're in another kind of fall risk … our mouths falling open and saying the wrong thing when we're tired or in pain or frustrated. It can happen to the one who needs assistance and their caregiver … all because of this "being human" thing. 

After getting home late Saturday afternoon, I was helping Roger, and his engineer brain was in full overload telling me what to do step by step. I finally said, "Stop! Stop telling me HOW to do it! I know what I'm supposed to do!"

He apologized. I guess that mental "slap" reminded him that I had spent all that time at the hospital learning how to attach the ice unit, and I didn't need the play-by-play report. And I proved it by just doing it WHEN he gave me a chance.

Caregivers and their loved ones all have to give each other a chance in uncharted or familiar territory. We all occasionally stumble, but they're not life threatening mistakes. They're just human errors … the curse we all bear.

Relationships are strong, yet fragile. Some people let them erode out of stubbornness or an unwillingness to forgive others' human ways. Sometimes we get caught up so much in our individual pain or woes that we forget that others who love us are hurting for us, too.

Even when we're hurting inside or out, when we stop to reflect on others' pain for us, it's a drug-free remedy for what ails us. It's also called distraction, because when we're not focused on me, me, me, me … we can give our nerve endings a much-needed break.

What do we do when we see someone sad? Angry? Having a pity party? We distract them with common sense, humor, hugs, humanity … When we give and when we receive, we ease our own blood pressure and pain …

I know this isn't a cure-all, but I can guarantee it's a cure-most-of-the-time … and that's pretty good in this imperfect world we live in …

I guess I'm still a fall risk … when I'm dancing and teasing Roger out of his reach … motivation, baby, motivation …

Thursday, November 22, 2018

The two hours that saved me from myself

By Monica Vest Wheeler

May you be blessed with discovering new ways of giving thanks on this day …

I am beyond blessed with the family and friends who never fail to lend a hand, a shoulder, a word, an ear … They put me in a place of calm, such as this moment of soaking in the power and peace of Lake Michigan last month on my way home from camp …

I now take better care of my physical self … walking at least four to five times a week, eating less and better … developing more stamina after losing more than 20 pounds … a great reversal after ending up in the ER near physical collapse two weeks after Mom passed away in July.

Yes, yes, yes, go, go, go …

Self-talk, self-talk, self-talk …

Yes, I believed that I was (re)building a new me …

Several days ago, I finally stopped to ask, “Who am I?" If I only knew. I had been writing the story for 60 years and finding fault with every previous chapter. There wasn’t enough red ink in the world to correct everything “I" considered an error. Intellectually I knew I was wrong but I couldn't course-correct emotionally … Don't worry. No cliff jumping because I'm afraid of heights …

My poor husband and son, the challenges they've faced with someone who has battled depression for soooooo many years … Talk about loving, patient souls … Yes, I wanted/needed help but was unsure what it even was. I had already increased my meds while caring for Mom or I knew I wouldn’t make it. However, I’m smart enough to know that meds alone wouldn’t “rescue” me.

I composed an email asking a professional counselor I knew for help. Then I steadied my shaking finger over the send button … and hit it. This person got me in for what turned out to be a two-hour Monica-athon. Poor person … I owe them a box of tissues to replace the one I consumed …

Finally, finally, finally … I untangled the roots of decades of self-imposed inadequacies, doubts and fears, and it made sense. In the last 17 years, I had had therapy several times because of my depression and made great progress. But this time, because of where I am in my lifeline and losing my parents in the last two years, I guess I tapped into a deeper vein of existence and purpose … oh yes …

And it was enough to cut my tissue consumption at home by 90 percent and to turn my husband’s tears of worry a few days ago to laughing, “Geez, you’re sure happy!” just yesterday …

Blessed be those who help and listen and love and hurt for us … family and friends who are kind and patient and compassionate … people who acknowledge they need help and ask for and accept it …

I need you … and you need me … what a glorious, glorious place to be …

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 …

Wednesday, October 10, 2018

The 20-pound weight loss diet I don't recommend

By Monica Vest Wheeler

Purchasing my August ticket for the ski lift in New Mexico, I saw the option for senior discount: 60 and over. It hit me that I had turned 60 in June and thereby qualified to save a few bucks. And the guy didn't ask to see my ID.

Hmm … I wondered afterward … did I really look that "old"?

Last month, I saw Midwest Pilot Club service organization friends I hadn't seen since April 2017 because I was caring for Mom in Indiana. They were so loving and complimentary about how "good" I looked, asking if I had lost weight. Yes, I had dropped some, though I laughingly didn't recommend the "grief diet" … losing Dad and Mom in 19 months.

I went for a regular checkup yesterday and discovered I had shed 20 pounds since July, when Mom passed away. What a "pleasant" surprise!

Yes, my "grief diet" has evolved in the last three months … from complete lack of appetite … to contemplating the need or consequences of virtually every bite I consume … to the elimination of junk food.

My poor husband Roger has had to not only get used to me living at home again full time after most of 10 months away taking care of Mom … but my drastically revamped eating habits. I simply don't have a hunger for anything beyond healthy essentials as I also walk at least every other day to rebuild my endurance. My comfort food? Pickled beets, like when I was a kid …

I still have an appetite for LIFE … though I have to stimulate it every day. Poor Roger also puts up with an almost relentless daily round of my tears, which seemed to have intensified in the last few weeks. A day without tears … well, it just ain't happening right now and I hate that loss of "control."

I can hardly make it through a conversation without succumbing to unexpected tears. Just ask the dear friends I saw yesterday … And without a word, they just hand me tissues and hug me as I laugh off the flood.

Yes, just keep holding me tight … as I make it easier for you to wrap your arms completely around me …

Friday, October 5, 2018

When we rewrite our life's missions

By Monica Vest Wheeler

I know there's "Throwback Thursday," but I needed a little "Feel Good Friday," and found it when I came across this image as I try to organize my digital life …

Ten years ago this month, in 2008, I met this amazing stroke survivor, Pat Dach, and her supportive caregiving sisters, Holly Stukenberg and Faith Long, at Retreat & Refresh Stroke Camp™ ( at Living Springs camp in Lewistown, IL. It was my first year and fourth weekend of being part of the Stroke Camp experience.

I captured Pat as she worked every ounce of energy she had to climb that wall. An amazing moment to say the least … and in that vision, I knew that I HAD to continue to be part of this life-changing project for stroke survivors and caregivers … hoping that founder Marylee Herrick Nunley would "allow" me to return the following year … I wasn't waiting for an invitation … :-)

And to watch fellow survivor David Keyes (Shirley Phelps Keyes) congratulate her was awe-inspiring and tear-provoking. If I could only imagine then how I would still "live" for these moments 100 camps later …

I had no intention of going to more than one Stroke Camp beyond my first in June 2008 … just interview survivors and caregivers and go on my merry little book-writing way.

I've "failed" my original mission in some ways — writing a bunch of books — but discovered a far greater one when I picked up my camera at my first camp and haven't set it down since. I came up "short" in some respects, but I'm taller than that climbing wall when it comes to the conversations that matter in life … and the abundance of hugs and love that came with the package.

I've experienced a little bit of everything at Stroke Camp, but I never attempted the rock wall. My hands and arms have never had the strength. How ironic that it's my hands and arms that carry and position my camera to capture the big and little moments of life for others … And give me the energy and courage to keep wanting more …
To Pat Dach and all those other survivors and caregivers … you keep ME going …

Wednesday, September 26, 2018

Tears of a story-listener and story-teller

By Monica Vest Wheeler

Still easing back into the "real world," yesterday I interviewed a nurse who had cared for premature babies for years. It's one of many conversations for a local history project I'm working on.

As she shared a particularly poignant story, I felt the all-too-familiar shuddering inside … and my tears erupted like a faucet. She didn't miss a beat as she continued her story, and the video camera kept rolling as I still jotted notes.

Only for one micro-second did I think, "How unprofessional of me to cry!" No, I had invested MYSELF in this interview, and this is simply who I am.

My tears fell several more times during our conversation because her stories shook my very core about the fragility and meaning of life. After turning off the video camera, I apologized out of habit about my tears, though added I had lost my mom just two months ago.

And we had this amazing discussion … all because we had allowed ourselves to be real … and even vulnerable.

I spoke for an hour to an Alzheimer's support group last week … no notes, no Powerpoint, no specific topic … other than how to survive. The words flowed as my heart wrote them … along with some tears as I shared the fears and hope of this uniquely human journey …

I may cry when I story-listen … and when I story-tell. Because it means I'm here … where I'm supposed to be … spreading the word, sharing the heartache, discovering the joy …

Monday, September 17, 2018

Blessed are those who don't run away

By Monica Vest Wheeler

We all look for someone to hold on to at times …

I love this amazing statue in Green Lake, Wisconsin, of a ring of children holding hands as they play. There's one opening in the circle … and like many before me, I jumped in to join the fun.

Recently, it's almost been easier to grab the bronze child's hand than a human one because I still struggle with tears when I connect with "real" people.

My family and friends continue to go above and beyond as I still grieve the loss of my parents within a year and a half of each other. And then I feel guilty as so many people deal with far, far greater losses, challenges and realities.

Therein lies the brutal uncertainty of grief. It plays cruel games with our hearts, souls and minds. Just when we think we can make it through another day, it screams, "Gotcha!" Its taunting can be haunting …

I've discovered that grief seems to magnify my own shortcomings, fears and insecurities. It's like walking through the walls of distorted mirrors in the funhouse without any of the fun.

This morning, as I witnessed the distant sunrise through the apple tree branches that did not produce fruit this year, I watched my two cats position themselves at the screen door overlooking the back yard. They gaze upon it with such curiosity that you'd think they'd never seen it before. Their heads turn in unison at every sound and movement of nature.

And I am filled with wonder again as I should be … as I realize how blessed I am to be surrounded by loved ones who don't run away from my tears …

Wednesday, April 25, 2018

Love is not wasted time or energy

By Monica Vest Wheeler

The good news was that I knew what to ask.

The bad news was that I knew what to ask.

Yet, when it comes to YOUR loved one … you need wading boots to avoid drowning in the puddles you’re creating with your tears and fears. You have no idea of the depths you’re walking.

All these years of encouraging patients and families to speak up and advocate for themselves … and reminding medical professionals that they need to listen more and ask heartfelt questions … paid off when my mother and I entered that oncologist’s office for the first visit on September 14.

The doctor and staff were beyond compassionate and knowledgable. We explored the knowns … orange-sized mass in right lung consistent with cancer … and unknowns … exactly what type of cancer, explanation of chemo and radiation options down the road … and life expectancy.

And then you turn your life over to paperwork, the calendar and other people’s schedules … and endless scenarios and uncertainty.

We automatically ask, “What can I do?” or “What should I do?”

Yes, I asked myself that as if on cue, but then I suddenly realized the deeper meaning, “What lesson am I supposed to learn from this and what am I supposed to do with it?”

Silly me, the hopeless philosopher …

On the phone eight days later, Mom said, “I hope this isn’t a waste of time and energy for you.” I was not surprised at her statement though reassured her it wasn’t a waste of MY time and energy.

After then saying in a cold, emotionless voice that she could go to a MRI by herself, I said I know she can, only that I wanted to keep everything on my calendar so I was prepared. Ten minutes later, she called and apologized for hurting me. I said I understand, but she said I didn’t. I explained that I understood that she’s being thrust into a whirlwind of activities and people she didn’t want. She didn’t disagree, which was a plus.

This was extremely hard on a fiercely independent woman who had always wanted to do it HER way. I had to keep reminding myself of that fact and that it was not going to be an easy road for either of us … with a river of tears in our path.

And I gave the tissue industry far too much business in October when we heard the test results: non-small cell lung cancer, a tumor on the left side of her neck that caused all the left shoulder and arm pain … and two brain tumors.

The oncologist — bless his heart — explained all the options and how it was her choice on how to proceed.

“Do you want to go hard at it?” he asked.

“I want to stay as active as I can.”

“One thing at a time,” he reassured us.

Yes, all we could and can do.

Order up … one day at a time … with a side of tissues for the daughter ….

Thursday, April 19, 2018

I knew I was intruding but I had to be there

By Monica Vest Wheeler
Bad news has a way of sucking the wind out of your chillin' plans. I only wanted to sit in my sunroom with my baby cats after a week away.

And what a whirlwind it was as I had been home only an hour on Tuesday, September 12. Mom didn't want me to worry while I was on the road, so she waited until I called her after my seven days of travel to Virginia for our first Retreat & Refresh Stroke Camp there and back with a detour to scout prospective camp sites along the way. 

Despite her overall excellent health and some fun photos of us earlier, she told me she had finally gone to the doctor for chest, shoulder and arm pain. She had tried everything over a six-week period to ease the discomfort. After an X-ray, the doctor ordered a CT scan. And the mass on her lung unveiled itself. 

She had signed the paperwork giving the doctor permission to speak to me about her health and get access to any reports. Thank goodness! They were trying to get her into an oncologist ASAP.

We said we’d stay in touch. I love you. I love you.

So, what do I do first? I called the primary physician, and the nurse gave me what information she had.

So, what do I do next? I texted Marylee to let her know what few details I had because we needed backup plans for the FIVE camps I had in the next SEVEN weeks. 

So, what do I do after that? I tell my husband and son that Grandma has cancer and I have no idea what’s going to happen.

So, what comes after that? I called my dear friend Genny and said I’d do a turn and burn — a four-hour drive each way to Indiana — to see Mom on Wednesday and learn more. Genny knows Mom and said she’d come along. She brought stuff for the night; I didn’t because I was certain Mom wouldn’t be able to get into the oncologist until next week at the earliest. And Genny was a perfect and eager support team as she had survived a scary battle with kidney cancer earlier in 2017. She understood the fears and uncertainty.

Mom values her privacy. So, I didn’t tell her I was coming over. She had told me too many times in the past not to come over because SHE said I was busy or SHE didn’t want me to travel any more than necessary.

Sorry, this time, I chose to be the disobedient daughter.

And I needed to do this for ME. I was still grieving the unexpected loss of my dad just nine months earlier. How could this be happening?!?!

On our way, Mom called to say the oncologist could see her in at 12:45 Thursday. She could tell I was in the car and asked if I was driving over. Yes, Genny and I were on our way. Her voice cooled immediately. But I was excited she could get in so quickly. That was good news!

Upon our arrival, I could tell she wasn’t pleased I had come over unannounced, but nothing was said. I knew I needed to stay so I could go to the appointment with her. All we know is it’s a large mass on the middle of her lung, consistent with lung cancer. They said it was the right; she said it’s the left, where she’s been experiencing pain. I couldn’t hug her tightly as she was in so much pain. She will only take ibuprofen though I wonder if she would benefit from more. Not my call to make at this stage.

I couldn’t wrap my head around my only-child emotions. I felt like I was intruding, but geez, I just want to be there. I had to! And I’m not even sure what to say or do.

I asked if she needed any food or other items. No.

I asked if she needed anything done around the apartment. No.

I asked if she’d please reconsider getting text messages so we could communicate easier. No.

As she explained how her cancer insurance policy was for only after the fact, I started to ask if she needed prior approval for anything, but she cut me off, refusing to talk about it anymore. 

I knew I had to give her needed space. Genny and I left and said we’d meet her and my aunt at the oncologist’s office the next day. And I needed some stuff for the overnight stay as my bonus mom Diane opened her heart and home, and the space I needed to process the known and unknown.

And I stayed awake much of that night, sobbing while rocking in my dad’s favorite chair ….