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Caregiving for senior family members is a labor of love that can be both rewarding and heartbreaking. You might go to bed with a smile on your face because it was such a great day, only to wake up to a medical problem that leaves you rattled. Some days your senior caregiving plan flows perfectly, and other days, it goes up in smoke first thing in the morning.
Regardless of how any particular day goes, becoming a caregiver is the start of a unique journey, one that you share with countless others. According to the National Alliance of Caregiving and AARP, there were 53 million unpaid caregivers in the United States in 2020 – that’s more than one in every five adults in America.1
Of those, 26% are caring for someone who has dementia or Alzheimer’s.2 And as anyone who has been through it can tell you, caring for an elderly loved one with dementia is a vastly different experience.
Patti LaFleur is one of those people. Before she began taking care of her aunt, who has been diagnosed with Alzheimer’s, she was taking care of her beloved mother. And for a time she was also a long-distance caregiver for her father, who had early-stage dementia.
She writes about the journey on her website, Care Partner Patti, where she provides moral support and advice for those who want to be good caregivers to elderly parents and other loved ones.
The Caregiving Journey Begins
Though Patti had been helping her parents out on a regular basis for several years, the need for her help as a more formal family caregiver shifted into high gear in 2018.
The early signs were there: Patti’s mom, who had type 1 diabetes, began to have trouble controlling her blood sugar levels and taking her insulin at the right times. She withdrew from social situations. She began to forget to pay the bills, and after having had no problems running a smooth household for over 40 years, this was a big red flag.
But the most startling change was a shift in her mother’s emotional equilibrium. “She was always a happy person and so when she started crying more that was a huge warning sign,” Patti says.
When her parents’ circumstances changed, Patti stepped up into a full-time caregiving role. “My Dad was her primary caregiver, but he ended up needing to go to the hospital and my Mom moved in with me and we never looked back,” Patti remembers.
For Patti, becoming a family caregiver wasn’t a difficult choice. “I have a sister, but she lives in Texas. It wasn’t even an option for her to be the caregiver. I was the one that just stepped in,” Patti says. “I also realized that I was the one that was able to step up, so I just did! There was never any discussion about who was going to do it because it all happened so quickly and I just did it. I had the skills and ability to care for her (financially, emotionally, mentally and physically).”
Managing Long Distance and Hands-on Caregiving
For a time, Patti was serving as the caregiver for her father while he was in a care facility, as well as caring for her mother on a daily basis in her own home. Juggling so many responsibilities is a challenge of skill and patience.
“Navigating long distance caregiving requires organization and communication,” Patti explains. “Challenges to being a long distance caregiver are really not having control over what is going on fully. You have to believe that everyone is doing their job and rely on their support. You also have to be able to advocate from afar, which is challenging!”
One of the challenges of caregiving for elderly parents is simply having enough of you to go around. In addition to your typical responsibilities of day-to-day life, you face an increasing caregiver burden that can stretch the limits of what you thought you could do. Though there are things that might make it easier, such as enlisting a strong support system or using medical alert technology to provide peace of mind, there are certainly going to be moments when a family caregiver is overwhelmed with the magnitude of responsibilities. Even professional caregivers aren’t immune to burnout, and Patti was no exception.
Dealing with Caregiver Burnout
When Patti felt burnout starting to creep in, she found ways to ease the caregiving burden through scheduling breaks and taking good care of herself.
“My Mom would do respite stays at a local facility to support this,” Patti states. “In addition, even if I couldn’t take a long break, I could take little breaks throughout the day [such as] taking time to journal, stepping away from caregiving for a breather, following a routine each day so I got an hour to myself to watch TV or finding things that brought me joy (like a bath) that I could do just for me.”
Patti was blessed with a strong support system around her. “My husband was the most helpful person on my support team. He would sit with my Mom so I could run errands and [he would] comfort my tears,” she says. Her friends were also an integral part of caring for her mother – they would even go on vacations with Patti and her mom. “It was absolutely beautiful,” Patti remembers. For friends who wanted to help but were too far away, Patti created an Amazon wishlist so they could still provide support from a distance.
Patti learned a great deal about hands-on caregiving from a friend who worked as a caregiver in their home for a time; that friend was a certified nursing assistant who taught Patti how to care for a person living with dementia. After Patti quit her teaching job to care for her mother full-time, she occasionally turned to professional caregivers as well as respite care at a local memory care facility when she needed to recharge her own batteries.
Caregiving Tips to Make Life Easier
Over time, Patti found a wide variety of products and ways to make caregiving easier. In addition to the incredibly important support systems and breaks that were so helpful to alleviate burnout, there were several enjoyments that she and her mother pursued to make life happier, healthier, and easier.
Music therapy was a strong help for both of them, as was art class. Patti’s mother enjoyed fidget toys and blankets. Her creativity came alive with Aquapaints. She had robotic pets which she named Popcorn and Pizza.
“The robotic pets brought us the most happiness and love!” Patti says. “They were so comforting to her when she would have sad moments and when we would go out in the world!”
Patti employed many safety tools in the home, including a walker, rolling toilet, shower chair, and Blink Smart Security cameras in her mother’s room to help keep her safe and secure.
Creating a safe atmosphere at home is vitally important when caregiving for seniors. Fall prevention strategies are an integral part of making sure your parents are as safe as they can be. Mitigating the fall risk is possible through aging in place solutions, and obtaining a fall prevention alarm for your senior loved one can give you both peace of mind as you can both rely on the 24/7 security of an elderly fall alert to summon assistance right to your door at any time of the day or night.
The Heartbreak of Saying Goodbye
The heartbreaking part of caregiving is that one day, it will end. And that usually means it will end with losing the person you’ve worked so hard to care for in their final months or years. Though you might believe you’re prepared, and might even have worked your way through anticipatory grief as the end nears, most family caregivers are not actually ready when it happens.
For Patti, that time came in March of 2022. The hardest part of the entire caregiving journey was her mother’s sudden decline.
“We had just gotten home from Disneyland and she got sick on our trip,” Patti remembers. “After that moment, she quickly declined. She got approved for hospice on a Thursday, but then passed on the following Monday. That was so heartbreaking to watch.”
Holding Onto the Good Memories
Caregiving gives many gifts. One of those is amazing memories of the person you love so much. Those moments of pure, beautiful connection are now counted among Patti’s favorite memories.
Some of those were very simple – just cuddling while watching favorite shows on the television were true bonding experiences during her mother’s last years. Traveling together, spending time with friends, and simply experiencing the world were cherished times.
“I loved doing art together and our daily dance parties,” Patti says. “Art was EXCEPTIONALLY connecting for us. We would laugh together, connect and sing. I also love that now that she has passed, I get to keep these memories to remind me of her.”
Though Patti grieves the loss of her mother, she holds onto her many caregiving victories and the special bond of love she and her Mom shared throughout their lives. “I can look back now and say ‘we did it’. We found joy despite the sadness. We laughed and lived our best lives. I am so proud of the care I was able to provide her and the opportunity to reciprocate her love.”
Alert1 honors Patti LaFleur and all caregivers on this National Caregiver’s Day and every day. Thank you, family caregivers, for your unwavering love and invaluable support.