When patients talk to me about their relationship with their caregiver, they often share how much they appreciate everything their caregiver does for them, yet they feel like a burden. In my own experience as an
informal caregiver, I’ve come to understand that the patient-caregiver relationship is actually a two-way street. As much as my mom relies on me to help her, I need help from my mom too. Here are some of the ways my mom helps me:
Accept help from others.
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patient-caregiver relationship is very close and we may forget that there are other people who can help too. No doubt, my mom prefers me over my dad or hospital staff to take care of her, but she’s become more open to getting help from others. At first she felt uncomfortable having someone else help, but we’ve found that most health care or supportive care professionals are very friendly and personable. It took some time to get used to it, but now she’s OK with having others help.
Aileen and her parents on a family trip in Hong Kong.
There are many services that can help you and your caregiver, such as home support, personal care, driving services, and fun and social programs. Using available supports like these can help free up some time and tasks for your caregiver. You and your caregiver can sit down together and talk about which types of services you want to use.
Do something by yourself, if you're able to.
At one point my mom and I caught ourselves falling into a pattern. Gradually, I started taking over tasks for my mom, not because she wasn’t able to do them but because I could do them faster. I wanted to save time and she wanted to save me time, but we realized we were getting into a bad habit. I was getting overloaded with tasks and taking away my mom's independence. So my mom has started to take back some of the smaller tasks, like setting the table and getting dressed by herself. It’s allowed me to focus on the bigger things like packing food, documents and her medication that we need. Offer to take on some of the simple things that you can do. Just make sure it is safe for you to do by yourself and don’t push yourself to your limits.
Communicate and share.
My mom used to avoid asking for things or letting me know when she first sensed something might be wrong because she didn’t want to be a burden. But this actually made it harder for me. Knowing about potential issues ahead of time means I can plan a better route or schedule, make sure we have food on hand, or make sure we stay near the hospital.
Some patients may avoid asking for what they want or talking about how they feel, but for the caregiver, hearing this information is very helpful. Also,
sharing how you feel can encourage your caregiver to share how he or she feels too. Your caregiver may be worried and stressed about your health just as much as you are, and sharing can help you support each other.
Remind your caregiver to take care of themselves.
It’s easy for caregivers to forget to
take care of themselves. My mom reminds to take care of myself by saying things like "come eat with me", "it’s cold outside, so make sure you bundle up" or "I'm going to be busy with this for the next hour, why don't you take a nap?" I used to roll my eyes and think “I know how to dress for cold weather, mom". But I’ve realized that I have been so busy making sure my mom’s OK that I don’t think about things like checking the weather forecast. I used to scoff when my mom suggested that I eat with her "for company". Now the reminder cues me to do a self-check. Often in those times, I realize I'm quite thirsty from running around or that I haven't eaten a real meal all day.
Create a schedule together.
It’s important that we plan out a schedule that works for both of us, and that my mom knows how to reach me when we’re not together. We review her upcoming appointments, our events, and daily tasks to create a schedule we both stick to. We always block out some “Aileen time”, where I have time for myself. Planning things out in advance and together has really helped us catch things that one of us has forgotten about and work through what our week will be like. It lets us feel more organized and in control.
It took some time for us to work out how we could best help each other, but I’m really glad we did. Instead of my mom relying on me, now we’re working as a team.
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