I first met Les years ago when he hired me to keynote at a leadership conference. We were introduced through work but would later be linked by life. Les is a charming, kind, athletic, humble man, committed to the development of youth leadership. He is also the devoted
husband of 51 years to his wife Debbie. Les and Debbie share a love story worthy of a full Hallmark film. According to Les, “I won Debbie’s heart dancing at Leroy’s.” In 2016, Debbie’s doctor of 44 years had run every test possible, but the tests confirmed his worst fears...Debbie was suffering from Alzheimer's. At the expense of his own health, Les spent the next 3 years loving and caring for Debbie. Les, no longer able to meet her needs and keep her safe, made the heart-wrenching decision to separate them for the first time in over five decades.
Keeping his vow, he continues to care for Debbie. “She can’t dance or walk any longer, but we are still dancing in our hearts.”
I reached out to Les when my mom first became sick. His strength inspired me. His love for Debbie warmed me. Dementia is not a journey we choose, but it is also not a solo trip. And if you are caring for a loved one with dementia, you are not alone.
According to The Alzheimer's Association, “Dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Alzheimer's is the most common cause of dementia. Alzheimer's is a specific disease. Dementia is not”. In short, Alzheimer’s is the disease, dementia is the symptom.
Recently my 83-year-old mom, Sarah, was visiting, and I was tucking her in at bedtime, just like she used to do for me. I brushed back her beautiful silver hair and kissed her on the forehead and said, “I love you, mom.”
She looked up at me with her beautiful blue eyes and gentle smile and said, “You’re a really nice lady.”
“Thank you,” I smiled and replied back. I patted her hand and headed to bed. I remember having to brace myself, tears flowing, we’re here, I thought.
"You're a Really Nice Lady"
“You’re a really nice lady.” In another space or point in time, those would have been wonderful words to hear. But when they are spoken by your mom are accompanied by a blank stare and emit a feeling of I’m not sure I know you, they hurt. You long for what is lost; crave what will never be again.
In nursing school, I learned about the five stages of loss: denial, anger, bargaining, depression and acceptance. This is the proven framework used to cope when you lose a loved one. They are gone and you are left with powerful feelings that need to be addressed and processed. But how do you mourn the loss of a loved one, changed by dementia, who is still living? If you choose to adopt the five stages of denial, will you miss the remaining moments with that person? Having a front row seat to dementia is saying goodbye without ever leaving. Grieving someone who may no longer be psychologically present, but who remains very much a physical presence, is painful. I do not refer to myself as my mom’s caregiver; I am her daughter and always will be, but the increasing needs of caring for a person slowly losing their grip on rational thought can be soul-crushing.
Several years ago, I lost my father to an aggressive cancer that took his life in 6 months. I remember talking to my husband about my dad’s diagnosis and realizing, this isn’t going to end well. However, my dad’s cancer journey came with a linear timeline. I could predict with some accuracy how and when it would happen. There is a timeline and a treatment plan I could follow and understand. There were tests and scans and blood work which all came with answers. I cried a lot and slept little during those months, but when the end arrived I had reconciled with this final chapter. A few days before my dad passed, I laid next to him, told him I loved him, thanked him and assured him I’d see him again one day. I was thankful for that gift.
Dementia is a cruel disease that takes away that gift. It robs you of sweet times to reminisce together. How do you say good-bye to someone who does not know you?
It’s agonizing to watch my mom gradually recede from me and from our family. These losses come slowly, incrementally. They creep up on you and suddenly you realize a part of their memory, their recognition of all that was familiar, is gone. The challenge is to recognize there will be loss before physical death. It requires us to prepare for death twice. I’m working to find peace in knowing I will lose my mom before her corporeal death.
Not long after that last day I spent with my dad, I was on the road speaking when the phone call came through that he was gone. When I arrived home I immediately went to our backyard looking for my mom who had been living with us for 27 years. When I got the phone call my dad had lost his battle I found my mom sitting in a beautiful flower bed pretending to dig, difficult to do because she was crying. Even though my parents divorced when I was in my early twenties, they remained friends. “Mom, I’m sorry. He was your husband for 35 years.”
She replied, “I’m not crying for myself; I’m crying for my kids who just lost their dad. That makes me sad.” I sometimes think about that day. I find solace that she does not know how my heart is breaking, losing her piece by piece. I recently heard of the term, anticipatory grief, used to describe feelings of sorrow that individuals experience prior to the actual loss. It was coined in 1944 to explain the emotional preparation of family members as they sent their loved ones off to war. While I feel grief in anticipation of my mom’s eventual physical death, my private war is being fought now. Loss of what is gone. Forgotten memories. I’ve been so blessed to have this strong, devoted woman as my mom. I take great pride in that. How do you share that pride with someone who does not even remember you as their daughter?
She mostly just agrees, smiles, shrugs her shoulders and sweetly replies, “Okay.” She cannot work, drive or talk on the phone. She cannot sew, assemble a puzzle or garden like she used to. I smile at the sweet things she says and does, and at the same time, feel my heartbreaking.
I'm angry. I feel robbed.
Selfishly, I’m angry. I feel robbed. I don’t want to be “that nice lady.” Being forgotten by my own mother is the loneliest thing I’ve ever experienced. I will always remember my mom’s
fierce love for her children; it is the legacy she will one day leave behind. But today, I pray for fleeting lucid moments when I can imagine her looking into my eyes and knowing exactly who I am, where she inhabits one more second of being my mom.
Through this journey, I have learned that sometimes you have to hurt to learn. I’ve done both. When my mom would forget things, act childlike or appear needy, I’d react with anger. As I age and grow wiser I have figured out hurt and fear are disguised by anger. This sudden reversal of roles was frightening. I was sad this was happening to my mom, to my family. But my anger was becoming an actual roadblock in our relationship. I was missing out on small moments. Meaningful moments. I was wishing this journey away instead of just loving and appreciating my mom and the time we still have together. Early in their marriage when life, jobs and children consumed their days, they both started setting an alarm to go off at the same time each day. “No matter where we were or what we were doing at 7:00 PM when our alarm rang, we stopped and thought of each other. ” Even today, 7:00 PM holds a special place in Les’s heart. Les has been an inspiration to me. He celebrates the small moments, soaks up the gift of time together and reminds all of us...we are not alone.
“How do I deal with all of this?” I recently asked my husband. He gently replied, “Smile and love the hell out of her.” That’s my plan.
This is my blog about dementia. I hope you enjoy it and never need it.
If you wish to help fight dementia please give to: https://www.alz.org/
Reynolds, L., Botha, D. (2006), Anticipatory grief: Its nature, impact, and reasons for contradictory findings, Counselling, Psychotherapy, and Health, 2(2), 15-26, July 2006.