Caring for a Difficult Parent with Brain Change

Caring for a parent with dementia or other form of brain change is one of the most difficult experiences many families will ever face. It can be physically demanding, emotionally draining and profoundly isolating.

When that parent has always been difficult — perhaps critical, controlling, emotionally distant or simply someone with whom you’ve had a strained relationship — caregiving becomes even more complicated. Old hurts don’t disappear simply because a parent develops brain change.

Josh Hickman understands that reality all too well. His memoir, Forgetting: The Trials and Triumphs of Caregiving for a Difficult Parent with Dementia, chronicles the three years he spent caring for his mother, largely on his own.

“It was the toughest thing I think I ever did,” Hickman said. “The isolation, the feeling of obligation, the having to be at home all the time, watching your personal life completely evaporate – it was very, very tough.”

Before his mother was diagnosed, life circumstances led Josh to move in with her temporarily – or so he thought. He noticed changes in his mother’s behavior. Once a snappy dresser, she began wearing the same clothes day after day. She ate erratically. He had to repeat himself over and over.

Josh shared his story in his book to help others in similar situations know that they are not alone.

“People assume that families come together and there’s a support network,” he said. “There are a lot of instances, like mine, where that just isn’t how it works out.”

Shelley Kutina, Community Liaison in Cambridge Caregivers’ Houston office, adds that even loving, close-knit families can be tested when a parent develops brain change.

“When there has already been conflict or a complicated history, caregiving adds yet another layer of stress,” she said. “Family members often need support just as much as their loved one does.”

Self-Care Isn’t Selfish

Josh’s advice: Be proactive. If you notice worrisome behavior, have your loved one evaluated by a medical professional as soon as possible. Take steps to educate yourself.

When the relationship is strained, know that it’s doubly important for caregivers to practice self-care. For Josh, a caregiver support group offered reassurance and fellowship. Taking time for hobbies and creative pursuits also helped. And taking time to walk his beloved dog Sammy was a lifeline.

“He was the only one who was with me through the darkest periods of this, and I’ll never forget it,” he said.

Leave Room for Healing

Finally, Josh encourages caregivers to stay open to whatever healing may be possible. Brain change can sometimes soften old patterns and create opportunities for unexpected grace.

Near the end of her life, Josh’s mother’s personality changed dramatically. She became kinder, more polite and less demanding. That led to a sense of reconciliation, an unexpected gift in this challenging time of his life.

When a difficult parent dies, grief is rarely simple. Relief, sadness, guilt, anger and regret may all exist at the same time. Josh encourages caregivers to give themselves permission to heal at their own pace.

“You can get through it,” he said. “Even when you have a terrible relationship like we had… something good can come out of it.”

Don’t Go It Alone

Professional caregivers can’t erase years of family history, but they can relieve some of the daily pressure. Cambridge Caregivers provides compassionate, non-medical in-home care including companionship, personal care, meal preparation, medication reminders, transportation, light housekeeping, mobility assistance and respite care. Whether a family needs a few hours of support each week or more comprehensive care, services can be tailored as needs change.

“Our team understands that every family has its own dynamics,” Shelley Kutina said. “A professional caregiver can often serve as a calm, neutral third party who reduces stress, gives family members a chance to recharge and helps everyone focus on what’s most important: the well-being of their loved one.”

If you’re caring for a loved one with brain change and need support, call the team at (817) 646-4695. Our experienced team can develop a personalized care plan that gives your loved one compassionate care while giving you the opportunity to rest and recharge.

To hear more of Josh Hickman’s story, watch his interview on the Manchester Living podcast.