This year, we are publishing several print and digital articles about caregivers, each with different backgrounds and the challenges they face. This is one of those stories.
Department of Pennsylvania, Unit 998
67 years old
Cared for her mother, Catherine, and still cares for her mentally ill sister, Kathy
About eight years ago, ALA member Patricia Gustin and others noticed that Gustin’s mother, Catherine, was having trouble getting around.
“It was very strange to us because she was one of those fearlessly independent women,” Gustin recalls of her mother, who was 88 years old at the time. “She had trouble getting out of her chair and getting around in general. She went from a cane to a walker to eventually she couldn’t walk and became bedridden.”
At about 91 years old, Catherine started to develop the onset of dementia. At this time, Gustin began to take over financials for mother. The dementia continued to progress, and that’s when the family needed extra help and brought in a full-time caregiver. Gustin still helped with grocery shopping and medications.
At first, some family members were in denial about the dementia. And not all lived in-state to truly see the disease’s progression on Catherine.
“It was hard for all of us because our mother went from this vibrant, self-sufficient, and independent woman to someone who really needed help,” Gustin said. “It turns your world upside down. You go from your same habits and routine to having to change everything around.”
In addition to caregiving for her mother, Gustin also has an older sister, Kathy, who is mentally ill, who Gustin also helps care for.
“The group that gets forgotten is the elderly — the group that gets forgotten even more is caregivers,” Gustin said. “If you’ve never been in a situation like this, you won’t understand the effect it has, not only on the caregiver, but the whole family in general. Our mother sacrificed so much for us, and it was our turn to sacrifice for her.”
Still working a full-time job while taking care of both Catherine and Kathy proved to be exhausting.
Gustin said that over time, she had to learn to be patient. There were days when she had to leave work and go over to her mother’s house for various reasons. Sometimes, the two would call Gustin a handful of times while she was at work. Luckily, she had a boss who really understood. Gustin ended up retiring a year earlier than planned.
“I couldn’t keep it up,” she said. “I was always sick or had terrible migraine headaches.”
Gustin and her siblings wanted to keep Catherine in her home, but financially, it was rather difficult once they reached the point of needing around-the-clock care. They found a service they liked and were able to afford.
It takes a lot to be a caregiver, many sides of which people don’t always think about. It is a journey like no other, Gustin said.
“Caregiving can be rewarding in part, but you can’t believe how difficult it is for a caregiver — physically, mentally, and emotionally,” Gustin said. “You are not feeling grounded like you once did.”
One aspect of caregiving that many face is burnout, which often takes a toll on a person’s overall health.
“It will definitely happen,” Gustin said of burnout. “It’s so important that you take care of you. Sometimes, you just have to say “no” or get someone else to help you. You can’t do it all.”
Gustin added it’s important to include an hour for yourself here and there.
Because she was single and retired, a lot of the responsibility ended up on her.
“I was at it every day and dealing with the difficulties of dementia — it’s heartbreaking,” she said. “And dealing with a mentally ill sister who needs special care too. Sometimes she has her days when she can be completely uncooperative. It’s part of her illness.”
Others around Gustin noticed she was not her usual self.
“I had a co-worker say, ‘You don’t laugh and goof off and say silly stuff like you used to — you’re just in your workspace or go out for a break and that’s it,’” Gustin said.
One day she broke down so hard at her desk, a co-worker got her boss, and Gustin sat in her office and just cried.
“I didn’t have much left,” she recalled. “One of my faults was not pushing more for help. Get the help you need. Try to stay very mindful of yourself. You are going to crash out and not going to be good for others.”
Gustin added that if you are feeling emotionally and mentally exhausted as the caregiver, get professional help. Being able to talk to someone who can help with your issues and help you understand your role is beneficial.
“You find yourself so swept up in the caregiver role, you end up having no life of your own,” she said. “Don’t let that happen to you.”
Gustin cautions to pay attention to warning signals for yourself for when you may need a break — having stomach distress every time you eat, regular headaches, can hardly look at your own mail, forget about paying a bill — overall, just not functioning properly, and more.
Throughout her time as a caregiver, Gustin had moments of getting upset, complaining, crying, and fits of anxiety and depression. She has since learned ways to help with those negative effects that can sometimes go along with caregiving. Journaling her thoughts has really helped.
“Get it out of your system,” she said. “Put it on paper. You feel better. You can also get ideas for what you can do better for yourself.”
She also enjoys making floral arrangements and is doing that again.
As Gustin reflects on her time as a caregiver for her mother, and now her sister, she points out to other caregivers that they’re not alone. You feel that way sometimes, but you are not alone, she said.
“I don’t regret a minute of it,” she said. “It helped my mother, who helped me so much throughout my life. It was a small price to pay.”
Gustin’s mother passed away in October 2019. She was 95 years old.
Are You A Caregiver?
The people who take care of us — Mom, Dad, grandparents, siblings, spouses, and visiting nurses — they get us where we need to be, they make sure we receive our medicine, and they always know how to make us feel loved. Caregivers do so much, yet oftentimes, these heroes don’t realize it. Are you currently serving in a caregiver role? We’d love to talk to you! Email us at ALAMagazine@ALAforVeterans.org.