Love is not lost: Tips to live in the moment as an Alzheimer’s caregiver

I wish everyone a lovely Valentine’s Day, although for caregivers and their loved ones diagnosed with dementia, holidays look slightly different than they do for others.

Caregiving takes up most of our time, and we inevitably fall into survival mode as yesterday blends into today, and today into tomorrow. As in the movie “Groundhog Day,” our loved ones with dementia can’t remember what it means to celebrate Valentine’s Day or other holidays. Even if the cognition is there, a husband with the disease won’t be free to drive to the flower store to buy a dozen roses for his love. A wife diagnosed with Alzheimer’s won’t bake her husband’s favorite sweets or decorate heart-shaped cookies for the grandkids. We must relearn how to celebrate holidays and other special occasions.

There are multiple reasons for this, but the nature of the disease is to rob patients of everything over time, including the love of activities they once enjoyed and the abilities that used to come easily. This is devastating for caregivers — not because we miss the chocolates, flowers, and cookies on Valentine’s Day, but because it represents loss. It’s the loss of a deep, loving connection.

Holidays can leave caregivers sad, even as they continue striving to connect with the person they love by building special moments for them on a holiday, birthday, or anniversary. We construct minutes into special moments they’ll often forget. But that’s just how it goes.

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The best plan

Life is fleeting and disappears so quickly, especially during the caregiving years. Somehow the days are long, but life goes by fast. A caregiver might feel like they’re standing still while a movie of other people’s fun lives plays in the background.

But it’s not the fun things that other people do that create envy in our hearts. It’s their connection with spouses, parents, and other loved ones. It’s a luxury not afforded to people with Alzheimer’s disease and their caregivers.

However, we also have something special that our noncaregiving friends tap into only sometimes. We learn to cherish the brevity of seconds and minutes. We practice living in the moment and in the present. We search our loved ones’ faces for a brief light that shines behind their eyes.

We learn to live in moments we don’t want to miss because we don’t know if they’ll appear again. Our special moments are measured in small responses — a smile here, a touch of the hand there. Sometimes we’re graced with moments of clarity when a loved one unexpectedly says “I love you,” calls us by name, or remembers they’re a parent, grandparent, husband, or wife to the person laboring about them each day.

Learning to live in the moment is the best plan for the sake of caregivers and their loved ones.

Lopsided love

Caregivers give of themselves, often with little in return. But don’t give in to the mindset that your relationship is lopsided. Keep loving through your acts of caregiving, and keep seeking connection.

My mother forgot many things, but she never forgot how love felt. For instance, she’d occasionally say something out of the blue, like, “I don’t know what I would do without you all. You take such good care of me.” My sister called those moments of clarity “God prints.”

As someone once said, “God ain’t always early, but he’s always on time.” Perhaps that’s poor theology, but it felt genuine in those moments of my mother’s clarity. God prints usually arrive when we need them the most.

My mother responded to our affirmations of love. If I said “I love you,” she’d say it to me, too. She seldomly said it first, but our love for each other wasn’t lopsided. She loved me.

I don’t understand how the brain works in a healthy mind, and I certainly can’t grasp how it functions with dementia, but whatever it is that prompts thinking ends up dissipating. My mom could remember Bible verses she’d learned, but only when prompted. She couldn’t bring up on her own what she’d learned, but I’d give her the first few words, and she’d eloquently deliver the verse hidden in her heart. That same functionality or muscle memory appeared when we said, “I love you.” 

Avoid comparisons

It’s a mistake to compare our experiences with those of noncaregivers. Of course, they’re living life to its fullest, and we strive to live to our capacity in this caregiving moment.

Prompt your loved ones to respond with words of affirmation. Abandon thoughts of being left behind. Caregiving is hard. We long for deep connections on special occasions — and all occasions — but caregiving is a moment, a season, and if it seems that God is showing up late or not at all, look for his fingerprints. And if you can, believe that he’s always on time.

Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.