When it comes to becoming a caregiver for a loved one, it can happen with a gradual uptake in tasks, a sudden need for immediate support, or, more often, something in between. Whatever the case, the transition can be challenging as there are many things to consider—emotionally, physically, financially and logistically, to name a few. It can feel overwhelming and isolating, but you’re not alone. Here, fellow caregivers share their own experiences and offer advice on what you need to know when becoming a caregiver.
1. Speak with the health-care team
Make sure you understand exactly what your loved one’s health needs are—for instance, medication regimens, dietary restrictions and required therapy, including what resources are available. When Susan moved her parents in with her family in Toronto so she could care for them, she had no idea of the in-home therapy and support available to her mother, Kim, who had hip surgery and had Parkinson’s disease. “I actually didn’t know what the services entailed or that they were even available!” Susan recalls.
It took some digging and coordination to arrange what her mother needed. “My parents would not have done this on their own. For a lot of seniors, they might find the whole process daunting.” As language was an added barrier for Kim, Susan also had to advocate for personal support workers who could speak Vietnamese, Cantonese or Mandarin.
2. Assess the finances
Is your loved one—or another family member—able to pay for everything that’s needed? Will you have to be a full-time caregiver, or can you still work a paying job? Julien was a university student in her early 20s when her mother, Ofelia, was diagnosed with pancreatic cancer. Julien didn’t know much at all about managing finances, let alone what expenses caregiving—or what came after—would entail. “We talked about finances a bit, but we should have talked more,” she says. “That was the biggest question mark for me when she passed. I didn’t have any income, but I had to pay for things including her funeral.”
3. Deal with the logistics
Safety is a huge concern, not only for the person who requires care, but also for the person providing it. Learn proper lifting techniques, install safety bars in the bathroom, remove tripping hazards and get a walker or cane for mobility issues. As well, stock up on incontinence products to help prevent embarrassing accidents and maintain a level of independence for your loved one, while giving yourself a break from laundry and cleanup. Carol, who takes care of her 87-year-old mother, Joan, who has Parkinson’s, says, “Incontinence pads are something my mom can use herself, and the cleanup is easy so we don’t have to get involved at that level.”
In Julien’s case, her mother was the caregiver for her own mother, which meant that when Ofelia became ill, Julien effectively became the caregiver for both her mother and her grandmother. “Having incontinence products for my grandmother helped me take care of my mom because it was one less thing to worry about,” she says. “I specifically chose ones that were less irritating to her skin so she would be comfortable wearing them.” Comfort is an important thing to take into consideration when looking for incontinence products, along with fit. Brands like TENA, for instance, offer free trial kits so caregivers can find the product that’s best suited to their needs.
1. Have the tough conversations
Keep an open dialogue with your loved one about their care. What are they still capable of doing independently? Would they prefer a support worker to help with hygiene needs? If not, are you willing and able to do it? Is it time for assisted living? When Joan’s health declined during the COVID-19 pandemic, living on her own was no longer viable. “My mother has always been very in control of her life,” says Carol. “She didn’t want her children telling her what to do as she’s very capable. But, as her health deteriorated, it became clear to all of us that we needed to revisit her living situation.”
At first, Joan stayed with Carol every second weekend, but then Joan had a back procedure and Carol became her full-time carer. After the recovery period, they both knew this wasn’t sustainable. “Mom felt badly that her care was interfering with my life, and I couldn’t keep taking that much time off work,” says Carol, who is a partner at her Edmonton law firm. Joan’s neurologist indicated that it was time to consider assisted living, which helped move the family down that path. “The conversations were awkward and difficult but respectful,” Carol affirms. “We knew it would ultimately be Mom’s decision.”
2. Stay socially connected
It’s easy to get inundated by the many tasks that caregiving for a loved one requires, leaving you without the time or energy to nurture the relationship itself. “I spent the majority of my time tending to my mom’s physical needs, [so] I never took the time to actually connect with her, even though we were living under the same roof,” says Susan. “If I had assigned more of the manual work to support workers, I would not have been too emotionally burnt out to have ‘social visits’ with my mom.”
Julien, on the other hand, says, “A lot of my caregiving duties were to lighten the situation and help my mom still feel like herself.” But since Julien was relatively young, caregiving was hard and sometimes caused friction because “my mom still wanted to take care of me.”
3. Prepare and care for yourself
When it comes to caregiving, the airplane oxygen mask analogy of putting on your own mask first makes perfect sense. Before you can help others, you have to take care of yourself.
“Take it day by day or even hour by hour,” advises Julien. “When you’re a caregiver, you can lose yourself. Take time for yourself, even if it’s a 15-minute breather.”
Carol agrees. “After a long workday, it can be a lot. I’m at an age now where I don’t have the same level of energy, and it’s exhausting. You have to make time for a break.”
“I’ve done everything wrong as a caregiver in terms of taking care of myself,” says Susan. “I took on too much and didn’t ask for help or accept help from family members, which grew into resentment and complete burnout. I put my mom’s health first and neglected self-care along with my family care. So, when someone offers help, take it!” Susan also regrets not joining a caregiver community. “I could have asked for advice as my mom’s condition progressed, and they could have prepared me for what to expect towards the last part of her life. More importantly, I could have voiced my feelings and struggles as a caregiver.”
“Remind yourself you’re not the sick one,” adds Julien. “It’s easy to get absorbed into it and lose sight of what’s important.”
And perhaps the chief thing to remember is to be kind—to yourself and to the person you’re caring for. “Be respectful and compassionate,” says Carol. “They are adults. Caregiving might remind you of caretaking children, but they aren’t children.”
TENA aims to support new caregivers at the beginning of their caregiver journey by sharing honest, compelling stories about what it really means to give care with compassion. Many caregivers rely on TENA products to provide continence-focused care and make their loved ones comfortable. Learn more at tena.ca/en/caregiver.