Caregiver Stories: Leah O’Rourke from Love To Care For shares her story of caring for Grandma Phyllis
Can you please introduce yourself and tell us about what you do?
My name is Leah O’Rourke, and I started a social media page called Love To Care For. My mission is to share educational resources with caregivers and their families, so they may take better care of their loved ones. I also work as a Physical Therapist Assistant (PTA), licensed in California and Florida.
Your caregiving journey began when your grandma moved to Florida to be closer to your mom. How did that come to be?
My mom is one of three siblings, and they all live in different states. Taking care of my grandma Phyllis was something we’d talked about for a few years, and we let my grandma decide where she wanted to be. She picked Florida. My grandma needed to get surgery, so when she got to Florida she moved into an independent living community. She lived there for two years, and she ended up having a fall, back surgery, a tumor, and cardiovascular issues. There was a lot of stuff going on. After her fall, she wasn’t able to stay in independent living, so she moved into our home.
That’s great that your family started those conversations early on. How was that for grandma Phyllis, transitioning from independent living to moving in with your mom?
I don’t think she was against it because she knew she needed the care. After the fall, my mom set up a few cameras in my grandma’s rooms – we were really concerned about her safety. And it was hard because my grandma didn’t like the feeling of being watched. She lived with my mom for three years total. At some point she developed dementia, which was difficult for all of us. My grandma used to do research, she was a scientist for a while, and as her disease progressed she knew something was changing. I could see the frustration in her face or in her body language when she wanted to say something but couldn’t remember the words.
I can imagine it was difficult to watch your grandma go through that. What was it like for your mom, becoming a caregiver?
My mom works full-time, so we needed to hire caregivers to help. With that came a lot of responsibilities: coordinating the caregivers schedules, finding and stocking supplies at the house, getting the room ready, adding bed rails, all stuff that we wanted to do to make it better for my grandma.
And you were living in California during this time, right? How did you manage caregiving from a distance?
Thankfully my mom works in health care, so she was familiar with the process, but I would get phone calls from her asking questions like, ‘What can I do to improve this? My back hurts, how can I make this better or easier?’ I work with older adults in my physical therapy job. There are so many little tricks and tips that she wasn’t aware of that I could help her with. I suggested small improvements like using a gait belt, getting a bedside commode or an over the toilet commode. People don’t realize the small changes you can make in the bedroom, bathroom, wherever it may be, to give your loved one an easier, better life that allows them to be more independent. Every time I came home to visit or spoke with my mom over the phone, we’d talk through ideas. I would send her pictures of equipment I recommended she buy, and when I was home visiting I would teach her proper body mechanics.
Were there any resources that your mom wished existed when she was a caregiver but weren’t available to her?
She wished she had someone to help coordinate everything involved in my grandma’s care. Someone you could call to help order medical equipment, or discuss my grandma’s state of health and what the next steps were. She ended up finding a resource like this eventually, but I wish there was someone that could help you transition from a skilled nursing facility to home, for example. On the days when you don’t have a home health aide or a nurse seeing you, it would be nice to have a number you can call for questions. I think especially for people who are new to caregiving or maybe don’t have healthcare experience. It would be nice for them to be able to get the knowledge and the information they need.
What were some of the challenges you and your mom faced caring for your grandma?
My grandma fell multiple times at home, even when she had a caregiver with her. We used the cameras in the room to look back and figure out what part of her might be hurting based on what side she fell on or if she used her arm to break her fall, or if she hit her head. Sometimes that’s hard to tell afterward. I really recommend having cameras in the house so that you are able to monitor your loved one.
Another issue we had was scheduling caregivers and them not showing up. They have no obligation to come, especially if it’s not through a company. There’s no one to fill in their spot. And then we need to figure out which family member can be there. Sometimes it would be me staying up with my grandma at night, or my mom. Those are the toughest ones, those overnight shifts. If you’re not used to them or you didn’t prepare for an overnight shift, they are really hard to do.
Did anything surprise you about caring for your grandma, maybe a challenge you didn’t expect?
Despite being a physical therapist assistant for people like my grandma, I quickly realized my work and caring for her at home are completely different. Not only because she’s family, but it is a lot different caring for somebody in a facility versus at home. I mean, this is 24 hours, whatever they need, you’re at their beck-and-call. And it’s not easy. It’s absolutely not easy. You’re doing everything. That was probably one of the biggest eye openers for me. It gave me so much perspective, and kudos to caregivers who are doing the work and taking care of their loved ones at home.
It sounds like it was overwhelming at times, for both you and your mom.
It’s easy to feel alone in it. You don’t know who to talk to. Your friends can’t understand. Your family members just want to tell you what to do and what’s best, but they don’t really know. That was one of the biggest challenges that I had, was trying to figure out what was the right thing to do and who I could talk to.
When a loved one has dementia, it can be very hard on caregivers to grapple with what their loved one “used to be like.” Did you feel that way at all?
Yeah. I mean, dementia is a progressive disease. So, at first, it’s just little things, memories or forgetting the name of something or an item or a person, whatever. The one thing my mom always said was, ‘I just don’t want her to forget my name. I don’t want her to forget who I am.’ I resonated with that at the time. And now, having been in that space, I don’t think that actually matters. It’s still your loved one. They still love you. And if something triggers their memory, maybe a song, or a story, or a joke, they’ll remember who you are. Whether they know your name or not. Sometimes my grandma would call my mom her mom, and that’s fine. They know that you’re an important figure in their life. That’s something that I learned along the way.
Can you share with us some important memories you had with your grandma?
Towards the end I tried to take more photos with her and little videos and use filters on Instagram and Snapchat to get her to laugh. Just being able to interact with her in small ways created really nice memories. And as much as I tried not to use my phone around her, I wish I had taken more videos of her just sitting there just talking to me, telling me she loved me. I wish I had that. Because you’re not recording these genuine moments. I think it’s so important to get to know your family members, doesn’t matter how old they are. It can be your parents, it could be an older adult. But just sit down and get their life story and be able to look back and reflect on that or to watch it in a few years. I think that’s a really great thing to do.
What’s one thing you want people to know about caregiving?
It’s hard. It’s a lot of work. It’s a lot of teamwork, it’s a lot of sleepless nights, it’s a lot of decisions to be made. But I also want people to know that a lot of memories are created during this time. It’s when your loved one needs you the most. It is so, so important to wash away whatever family issues you have now because at some point, you’ll have to let it go. What are your parents going to do when they need you? Who’s going to take care of you, when you’re older? I think that these are important questions to ask yourself now. And really focus on and appreciate the time you spend with your loved ones.
Follow Leah at Love To Care For on any of her social channels: