by Pat Killingsworth, multiple myeloma patient and blogger
With Valentine’s Day being the theme of February, the MMRF staff and I thought the timing was right to spotlight caregivers and the invaluable role they play in the lives of myeloma survivors.
I’ve written a number of blog posts and columns about this. I thought about going back and re-reading some of them, but I realized I wanted to do something other than list the indispensible things our caregivers do for us, and then try to thank them; a nearly impossible exercise, since words cannot express all caregivers do for so many of us, day in and day out.
Instead, here are some tips on ways to help make our caregiver’s lives easier; ways to thank them through what we do, not just what we say.
I realize that caregivers come in all shapes and sizes: spouses, family members and/or friends. Sometimes one person takes the lead and does the heavy lifting. For others, it may take a village to help us get to our medical appointments on time, remember to take our medication, help keep us from becoming emotionally down or depressed, stay sharp and focused when we meet with health care professionals when we can’t, eat and exercise best we can and a host of other things that help us live our new normal lives.
It’s easy to forget that some patients don’t have a ready-made support system to draw upon. I’d like to address this in a future post. Today, let’s think about how we can help our caregiver be more efficient, and the ways that we can love and support them:
- Don’t take it out on your caregiver; not an easy thing to do when you’re on dexamethasone. No excuses! Be kind to the person that’s trying to help.
- I see it often; patients that expect their caregivers to take care of everything. That’s not how this works. Instead, the patient and the caregiver should try and learn as much about myeloma as possible together. One of my readers shared these wise words with me a few years back, “Ignorance breeds fear, but knowledge can give you hope.”
- Strive to be organized. Help your caregiver schedule and group appointments to save drive time. Develop a system. Don’t argue with your caregiver when it’s time to take your meds. Double check to make sure the system works.
- Be honest, but don’t wallow. I think it’s a mistake to try and insulate our caregivers in order to protect them. If an issue comes up, try and work together to find solutions; address them, then move on.
- Encourage your caregiver to recharge their batteries. Everyone needs some time to be alone; to think and reflect. If the patients suggests it, that can mean a lot; your caregiver may not feel as guilty about taking some time for themselves.
- And speaking of guilt, shelve it! Kiss it good bye! Remind your caregiver that they are doing all they can to help—and how much you appreciate it A good caregiver learns how to delegate. They shouldn’t try and do everything themselves. They should insist that their patient takes on as much as they can handle. They should ask for help from friends and family, and be specific about what they need. They want to help. A caregiver shouldn’t hesitate to oblige them!
- Work together to cultivate a positive mindset. Tradition has it that the caregiver is there for the patients. Turn this upside down; remind your caregiver that you’re there for him or her, too!
- Surround yourself with positive people. This isn’t as easy as it sounds. Patients and caregivers both need as much positive reinforcement and inspiration as possible. Yesterday was my birthday. I received dozens and dozens of congratulatory comments and emails. The most special? A simple note from Pattie at the start of the day, and a long hug after a tiring journey from my lovely life and all-star caregiver.
- Tell them you love them. Not just your wife or husband, but friend, sister; anyone that’s helping.
I could go on and on, but you get the idea! Cancer is a team sport. I hate television shows that focus on the self suffering cancer patient, waiting to tell others about their plight. Waiting for what? Friends and family have the right to know—and they’re ready and willing to help.
Most of us aren’t in this alone. Next month is myeloma awareness month, so my post explores the pros and cons of the growing tradition of cancer “months.” Once the month is over, for the patient, the cancer is still there.
In April, I want to address those of you that don’t have spouses or significant others to help you along your cancer journey; maybe I can help.
In the meantime, give your caregiver a big hug and thank them for me!
Feel good and keep smiling!
To learn more about Pat Killingsworth: Multiple Myeloma Blog