It was a day for banking memories.
We shopped, dined out, laughed and cried. We chatted about missing Chris, her son; my brother, who passed away last July. At the end of the day, mom remembered none of what we’d done or where we’d been.
When I tried to help her recall, she said sadly, “What’s wrong with me? Why can’t I remember?”
“Mom, it’s OK. I’ll remember for you,” I told her as we sat on her front-porch steps under the apple tree, me fighting back tears.
“Sometimes I think it’s better when you can’t remember some things,’’ she said.
Dementia is debilitating. It’s cruel, unfair and mostly heartbreaking for not just the one struggling but for those who love the ones who struggle. Nearly 50 million people are living with dementia worldwide, and nearly 8 million new cases are diagnosed every year, according to the World Health Organization.
Dementia robs an otherwise healthy person of their ability to think, remember and reason. It also affects their emotions and personality. I see that mom becomes easily agitated, loses her temper more often and appears despondent at times. Before dementia, mom was one of the most patient people I knew, was slow to anger and enjoyed long road trips.
Like yesterday never happened
This merciless brain disorder, however, has not completely stolen mom’s personality. She still giggles at silly things and prances around when she’s feeling confident. Her heart still oozes with love and kindness. And she still knows her kids and loves her Lord; never missing Sunday mass.
Mom has been losing her short-term memory for about five years. For the most part, her long-term memory is still intact. She can recollect childhood memories and spin tales about her high-school years but ask her what she did yesterday, and she comes up with nothing. Nothing. I can’t imagine the frustration of trying to wrack your brain to grasp a single memory about the day before and not be able to secure it. It’s like yesterday never happened.
In the last few months, it appears mom is not making any new memories. Sadly, the more painful ones, like the loss of her first-born son in July 2017, are the ones that stick. I feared when my brother passed away, she’d have to relive his death every day because she wouldn’t remember his passing. She’d visited him nearly every day he spent in the nursing facility that had become his home for two years after the stroke. I feared she’d make that daily trip to the nursing home, expecting to find her son waiting in the hallway in his wheelchair for her, only to be told he’d passed away.
But mom did remember. And she still remembers she buried her son.
The trauma of losing your first-born is tragic and life-changing. Those kinds of memories stay implanted. Seems to be a two-edged sword. Fortunate mom doesn’t have to relive his death every day, but unfortunate she must remember him dying at all.
Caregiving takes its toll
Caring for a loved one with dementia is taxing. Often, the children of parents with this brain disease are saddled with taking care of routine things around the house, providing transportation to and from doctor appointments, and performing weekly or sometimes daily grocery runs on top of managing their own lives. And often, the caregiving falls on one sibling. For me, 400 miles and a full-time job prevents me from shouldering some of the burden, and that kicks up a fair amount of guilt. Trying to find a way to contribute more has been a challenge, but one worthy of implicit exploration.
I applaud my baby brother and his wife, who run a business, take care of five children and help care for our ailing parents. The responsibilities have taken their toll, however. My brother has his own set of health issues to manage. And yet he keeps stepping up because of who he is. He’s driven by his compassionate heart no doubt.
As our parents age, our roles will certainly change, and we will see a shift in caregiving. Where once our parents took care of us, now we must take the reins.
I think the hardest part about caring for a parent with dementia is knowing your loved one is fading with every day that passes. That realization forces you to make every moment with clarity count because there will come a day when your loved one won’t remember your name or your face. So how do we soldier on knowing of this impending painful ending? With God’s grace and Christ’s strength. Love propels us forward and patience helps us persevere. “With all humility and gentleness, with patience, bearing with one another in love,” Ephesians 4:2 says.
If you are a caregiver of a parent suffering with dementia, here are some tips, courtesy of AgingCare.com:
Encourage a healthy diet | Provide them with plenty of fruits and vegetables and replace red meat with fish that contains helpful omega-3 oils, all important brain foods.
Avoid stress | Stress can exacerbate the symptoms of dementia. The body produces cortisol when stressed, which damages brain cells. Encourage your parent to exercise or meditate or find a healthy alternative to deal with stress.
Stay active | Get your loved one moving whether it’s going for a brisk walk or swimming. Exercise cuts a person’s chances of developing Alzheimer’s by up to 50 percent!
Exercise the mind | Provide books, puzzles or games that stimulate the mind.
Make a plan | Discuss with your siblings a course of action should your loved one require assistance outside of the home. When they are no longer able to live on their own, where will they go? Having a plan in place will provide peace of mind.