The Best Way To Show Love

My mother died roughly 8 months ago while listening to my Father read poetry to her. The book my father was reading from was originally written in the early 1900’s, I had purchased it a couple years ago at an old and dusty thrift store in Wells, Maine. Much like the old book being read to her, my Mother’s brain had grown tired and worn from a 6-year battle with Alzheimer’s Disease.

The day when someone dies is rather surreal. I still have not seen someone take their final breath but moments after I left my mother to go and purchase a fresh cup of coffee, she slipped away, into the arms of her loving heavenly father.

I had arrived at my Mother’s apartment (I refuse to call it a Nursing Home - as she hated that term) early that morning after multiple 8-hour days, sitting by her side, listening only to the keys on my laptop chirp and well-used air circulate in a 12x12 room. Two windows allowed light to creep in and a bird feeder just left of the bathroom provided frequent visitations from local wildlife. I own my own consulting company and luckily I was blessed with clients who gave me plenty of slack to take care of my Mom, which was quickly becoming an additional part-time job.

Truth be told, I felt very alone with her. My Father and I had an unspoken agreement during her final days, I would serve by her side in the morning, afternoon, and early evening and he would take over at sunset - typically around 4:30 or 5:00 pm and stay until she went to bed around 10 pm. Not once during these final days was an appropriate word or phrase spoken by her and any Hallmark moments we might hope for that are so commonly promoted by Hollywood - were absent from our life’s script.

The “shift change” allowed me some much-needed respite to try and relax. Although typically the first 3 hours of my “rest period” were spent either updating family, my personal friends, ranting and raving to my wife about the process, or simply sitting in my car alone - in the dark, trying to remember and accept how great darkness and quiet felt. It was during in those moments I could literally feel the blood flowing through my veins as I thought and strategized how best to maintain my mother’s dignity during her relationship with such an undignifying disease.

I’m not sure if I ever actually told my mom that I wouldn’t ever let her look dirty, unkept, or ill but mentally I had made a pact that while my mother’s memory may leave her, her beauty and dignity never will. It seems that for some reason deep inside me is a sensitivity to the ill. My wife would be quick to tell you that I’m not the most compassionate person with everyone but with those that my heart breaks for, my compassion and loyalty run pure and as close to altruistic as I dare be.

The afternoon my mother died wasn’t unlike the days that lead up to it. The constant mental pressure of wanting to inform family and friends of how bad the situation was equally coupled with the gnawing fear of knowing that if I got the messaging wrong I’d likely be labeled an exaggerator - as if exaggeration is even possible when it comes to how awful Alzheimer’s disease is.

The fear of not wanting someone to tell me “how good my mother is actually doing” (during their 15-minute visit) was a mixture of selfish self-protection and a scabbed heart from prior flirtations with death and long-term sickness that my mother had already experienced. You see, the 5 years that lead up to my mother's relationship with Alzheimer’s was fraught with a debilitating bought of Lyme disease - an equally misunderstood ailment that is easily tossed aside as menopause, depression, bad attitude, muscle pains, or a side-show ailment brought on by a serious case of hypochondria.

The pressure on a caregiver who truly knows the details of a loved ones failing health carries more angles on it than a Rubik’s Cube. The colors are plentiful and matched with fears of others not caring as much as you wish they did, some caring but not showing it, and also the milk toast reality that you really are alone. No phone calls can fill the gaps that slowly losing a loved one creates.

One of the constant temptations of slowly losing my mother so many times is to believe the lie that I was totally alone in the journey. Truth be told, I wasn’t. I have family, friends, and my mother had hundreds of people who showed up at her wake or funeral to bid her adieu. At the end, my broken heart wanted to cling to the familiar loneliness but the community who appeared, even if they didn’t appear by her side when she was still breathing, was there at the finale.

When I was a young boy a close friend named Billy was diagnosed with a terminal brain tumor. I remember sitting in biology class when some teachers came in to let us know that Billy’s condition wasn’t good. They made it pretty clear that he likely wouldn’t ever see 9th grade and if we wanted to see him again, we should plan on visiting him. Mentally, I made a note, “Visit Billy this Summer.”

Before I knew it, Summer had passed - and so had Billy. He slipped out of my life and into the hands of the same heavenly father that now holds my Mom, without a show. There was no major news alerts, social media campaigns (Facebook didn’t come out until 6 years later), or Ice Bucket Challenges - just death. Death of a young man, too soon. One, that the action I took when I found out he wasn’t long for this earth, was to, “Make a mental note.”

Mental notes don’t heal hurt, loss, or cancer. In fact, mental notes don’t do anything. Believe me, many people shared with me the mental notes they made to visit my mother when she was suffering for the past 5 years - apparently, much like the mental note I made with Billy, the note got lost.

Life is busy. Life is noisy. Life is so fast and so easy to lose track of that we don’t even realize it when we had an opportunity to selflessly impact another person’s day and instead take out our virtual reminders and make a mental note. As if that mental Post-It Note would stick and somehow stop the ailing person from leaving our side. I think mental notes are our own weird way of protecting ourselves from the short-term discomfort that comes with serving others in a truly selfless way. Life is busy. Life is noisy. Helping others is not natural.

I remember the start of 9th grade, we held a short memorial for Billy and I was asked to recite a poem I had written about him. Nervously, I stood in front of hundreds of my peers and the only poem I had to offer began with, “I was the who said I’d go tomorrow, I was the one who said I’d visit the next day…” The poem ends with me revealing my ineptitude as a friend and a deep promise that I would never, ever, make that mistake again. Thanks to the lessons Billy taught me, my mom had a wingman she couldn’t get rid of.

One of my favorite songs to sing to my mother as she was slowly fading into a new heavenly reality was “What a friend we have in Jesus.” The song soothingly proclaims “Oh, what peace we often forfeit, Oh, what a needless pain we bear, All because we do not carry everything to God in prayer.” My voice would crack and stumble as I’d attempt to hold my mother’s hand and serenade her with the promise a heavenly friend who was waiting for her with open arms and a pure love.

During those final hours, my Mother’s hand would grow cold and then warm, she’d grip my hand feverishly and mentally I’d tell myself she’s letting me know she’s still here. With Alzheimer’s disease, you become a master at lying to yourself - making believe that squeezes of the hand, flinches in the cheek, or sudden smiles are all flares of the soul that exists inside the failing body. I’ve heard of caregivers sharing entire “conversations” they’ve had with their loved ones who have actually been non-verbal for years. It’s the only way we can cope, we must grasp for whatever the patient can muster and maybe they really are in there somewhere. Maybe we’re not playing Sherlock Holmes in a mystery that isn’t a mystery at all.

About 3-hours before my mother passed I was gently holding her clenched fist when I sheepishly murmured, “I don’t want to see you die - I don’t want that to be my last memory of you.” I felt bad for having such a self-serving request in what was obviously the final hours of my Mom’s life but I figured she was used to me making requests…after all, I was the baby of the family - the youngest of 4 boys.

My mothers labored and rattling breathing continued on until my Father arrived around 3 pm. I told him that I needed to go to the coffee shop and get some fresh air. I gave him the book of old poetry that I had been reading to her and told him that I loved how the book made Heaven sound so peaceful. We agreed that she likely was enjoying the readings and he continued to unravel the words of peace and serenity that the author presented.

About an hour later my mom silently slipped into the arms of the savior that my Father had been reading to her about. No longer were streets of gold just words of admonition, now, according to my beliefs, she was dancing on them - singing songs of joyfulness and healing. With a healthy mind and grateful spirit, I can picture my mother breathing out one last breath of Alzheimer’s ridden existence and breathing in a soul full of healing and joyfulness. No more fractured memories, confusing conversations, or disappointing diagnosis - just healing and peace.

When I arrived to see my mother’s dementia-free body I kissed her forehead and whispered into her ear, “It’s over. The fight is over. You were a good Mom.” In silence, my father and I sat. Just him and I and her body. A couple minutes passed before my father said to me, “I was reading to her and when I looked up she was gone.”

I told my Father that I had expressed to her that I didn’t want to see her take her final breath and how appropriate it was that she lived her final moments of life, serving others. In my own head, I can hear her telling herself, “Don’t let him see you die. Just hold on, he’ll go and get a coffee and then you can reward yourself with that sweet peace that surpasses all understanding.”

Life is busy. Life is noisy and mental Post-It Notes do not heal broken hearts, comfort tired caregivers, or hold the cold hands of dying loved ones. The next time you have the chance to serve another, I hope instead of making a note, you take an action. Nothing shows love like actually showing love. Emails, text messages, and all the Skype calls in the world will not fill the hole that will be left when your mental note eventually fades.