November is National Family Caregivers Month (NFCM), a time to recognize and honor those special people who care for their loved ones with chronic conditions. As someone who has lived with a physical disability for over twenty years, I’d love to share some tips for family caregivers from my perspective.
Tips for Family Caregivers From a Patient’s Perspective
Caregiving for a family member, friend, or partner can be emotionally and physically taxing, even though it is done out of love. Here are a few helpful reminders and tips for family caregivers that may get you through times of burnout or frustration.
1. Remember that caregiving is a collaboration.
Caregiving is a team effort between the caregiver and the patient. If the person you’re helping is able to tell you what they need, I suggest sitting down together and making a list. Go over what they need your help with and what they’d prefer to do independently.
As a paraplegic with a spinal cord injury, I can tell you that it is very important that my husband knows which tasks I don’t want his help with unless I ask. For example, I don’t like people hovering around me or pushing me about something.
Because we are open with one another, he knows I will ask him if I need his help. He understands how important it is to me to be able to do certain things for myself so I can feel good about myself. And I always know that he will come to my aid if I am in a predicament.
Our life is a dance in a way. We watch each other’s moves to know our place in those moments.
2. Be open with each other.
When you’re new to caregiving, it’s helpful to set up a weekly check-in time together. These one-on-one meetings can be an opportunity to discuss any upcoming healthcare appointments, visits from physical therapists, etc., and also to check in with each other and see how both of you are feeling.
One of my top tips for family caregivers is to be open with one another (if it’s that kind of relationship where you feel comfortable doing so). I personally like to discuss what I call our ‘down days.’ Down days are when negative emotions overwhelm and outweigh the good emotions.
Talk about how many of those times you’re experiencing as a caregiver. How many is your loved one experiencing? Do you need to take some time to de-stress? Should you contact a doctor about any mental health symptoms? Should you arrange a day trip or a vacation or go to the park or a movie?
Doing fun things together outside of basic caregiving tasks can help you bond and feel better.
3. Create and follow a caregiving routine.
Having a reliable routine can reduce the number of daily decisions you need to make as a family caregiver. It’s something both you and the person you care for can depend on.
Pick specific times of day for specific tasks. I also like to schedule days for paying bills, shopping for groceries, and anything else that needs to be done on a weekly or monthly basis. Also, make a backup plan for who will do what in case you get sick or have a day when you can’t complete your usual tasks.
4. Take breaks from caregiving tasks to re-center.
There are going to be days that one or both of you will not feel great. Maybe your loved one feels unheard, or you may feel neglected or stressed.
The best thing to do in those moments, if you can, is to take a short break and do your own thing.
Here are some ideas to combat burnout and get centered again:
- Call a friend and catch up
- Reach out to a caregiving support group online
- Meditate or do breathing exercises
- Try a coloring book or find another creative outlet
- Take a hot bubble bath
- Schedule a massage
- Bake a favorite dessert or cook a favorite meal
- Write in a journal about your feelings
When you are back together, take some time to remember everything you’re both grateful for, including one another.
5. Remember that you are someone’s silver lining.
When someone is living with a chronic illness, medical condition, or disability, it can feel isolating, emotionally painful, and even, at times, humiliating. People who require the help of a family caregiver may also feel guilty for needing assistance.
As a caregiver, you are their silver lining. Always remember that you make a difference. As patients who need care, we find so much solace in knowing that there is someone on our side who is going through this journey with us.
You matter, and you make the life of your loved one better because you care enough to be there.
Thank you, family caregivers, for everything you do!
