Advice For Caregivers, By Caregivers in Honor of National Caregivers Day
In honor of National Caregivers Day, we’ve assembled some words of wisdom for caregivers, by caregivers. We understand that until you’re placed in a situation where you have to care for a loved one, no one will ever truly understand what the experience entails. Embracing this, we went straight to the source to uncover the best advice to help those navigating a loved one’s diagnosis and adjusting to their new role as caregiver.
With so much emphasis placed on the needs of the cancer patient, what do you think people need to know about caring for the caregiver?
“I think for me it’s more of the acknowledgement that emotionally we are going through this journey as well.”
“I think it’s important that people know how impactful this diagnosis is not only to the patient, but for the people who are there to care for them. That it can be emotionally tiring and scary and at some points, seemingly overwhelming. Most importantly, knowing that there are other people who can help and understand what they’re going through. It’s important that they know where the resources are.”
“That after being placed into a state of shock regarding a brain tumor diagnosis, the caregiver, while battling PTSD, will often be making life-changing decisions with and for their loved one. It is not easy to think about oneself with a loved one in need of all you have to give.”
Do you ever experience a feeling of powerlessness? How do you find strength?
“Once you get into doing the caregiving and realize how involved it can be, you have to realize that you can only do so much and you have to realize that is good enough. The patient is not helpless in many situations and they need to do their part being as healthy as they can be, both physically and mentally, so keep as active as possible for both of you. Meditation, exercise and massage therapy is something that I do that helps me deal with the stressfulness of the situation. Socialization is important for all concerned. The patient needs to have a sense of value and assisting in their recovery is important.”
“It’s interesting that my first response to this question is that often the caregiver does not have time to dwell on feelings such as powerlessness. You set feelings aside and take actions that you pray are the best for your loved one.”
“Caregivers have a tendency to want to do it all. Strength comes from rest and sleep to keep going.”
How do you manage your own needs/wants out of life while in the caregiver role?
“You have to. It depends on the caregiver situation, but in my case I had to manage because I have young children and I was in my masters program during most of the caregiving role for my mom who had a GBM. As a result, there was no time for me to think about me, I was on the back burner.”
“It’s a balance. I personally live off of a calendar. Everything is scheduled. There are good days and bad days, and things can be rescheduled. It’s always important to give yourself some ‘me’ time.”
“This is a tough one! You have to prioritize or balance your needs with that of your patient so that it is a win-win for all. I know from experience that a time table is generally set for survival or expectation for recovery, and that is how I originally adjusted my life accordingly. The time table keeps changing for the good of the patient and then you have to adjust your life accordingly again. My view is that I’m paying it forward so that when I will need help, someone will do the same for me.”
What are your best coping mechanisms to keep you able to care for your loved one?
“A day off, prayer and emotional support.”
“Being with my mom gave me a sense of purpose. I knew when I was with her, that I was doing something. That’s why even though the caregiver role is so difficult, it’s one that most people (I believe) would do in a heartbeat. Because feeling like you are doing something is very important.”
“Making the most out of each day that my son was alive. Praying that research for more effective treatments would make it to the clinic. Bonding with the medical and rehab staff who understood.”
If you had one piece of advice to give another caregiver just starting on this journey, what would it be?
“Be flexible and learn as you go. And when you need help, reach out to your support group of family, friends and professionals. Know your strengths and limits, and deal with the changes that will happen. Humor is good for all as well.”
“Ask for help and say no to things if you need to. People will have all sorts of advice — listen to it, but pick a path that works for your situation because everyone is different. What works for some, may not work for others.”
“Make sure you ask as many questions as you want. Not only to the doctors, but the staff and all people involved. Make sure you know what they are telling you and that you are being an advocate for your loved one. Because, at some point, they may not be able to do that for themselves. Also, find out what resources are available. Be the squeaky wheel!”
Lanette Veres of the Gray Matters Foundation, our official patient support partner, helped acquire these responses from the vast network of caregivers she has provided support to over the years. We want to thank her and all of the caregivers for taking part and providing advice and words of encouragement to those new to this experience.