Being a caregiver is a tough and often thankless job. As a spouse or a parent or a child, taking care of loved ones is a responsibility that is often expected and though you do it with love, who really is trained in taking care of someone with a serious illness other than those in the medical field? It’s not like you know what you’re doing, so you just muddle through and do the best that you can.
I have been both a caregiver (to my mother) and the person being cared for (by SuperHubs). Both places have their inherent challenges, and the one thing I learned about being a caregiver, is that you also need to take care of yourself. If you are falling apart, it will be hard to care for someone else.
This is the hardest job, as it crosses so many boundaries; relationship roles, age, gender. The one thing that pretty much everyone can agree on is that they didn’t plan on doing it, it just happens and you have to figure it out as you go. Sometimes successfully, sometimes not so much.
In my own family, we have had an epidemic of caregiving in the last few years. During my mother’s lengthy and challenging illness, no one fought harder for her than she did, with the possible exception of my stepfather. He was endlessly loving, present and patient. Sometimes she was not the easiest to deal with (we’ve all been there). The frustration and anger that a patient can feel about the limitations of their situation can often be taken out on the person who is caring for them. That makes it doubly hard to do the job, but he did and it was a powerful lesson for me as an observer. My aunt and uncle also took care of my mother in her last months, and the love and devotion they gave to her when she was no longer herself was so inspiring to me. Those two very special people have been caregivers to many, including both sets of their own ailing parents. My aunt says it is her privilege to care for her loved ones, and that says a lot about what exceptional people they are.
My half-sister took care of our dad and her mother and lost them both within nine months of each other. She was left to pick up the pieces of their lives and put it all away, from packing up their belongings to settling things their estate. This was solely on her, and it was an extraordinary burden done with love and great thoughtfulness. The real legacy of her parents was raising such a person, and while it was difficult, she came through it with grace and purpose.
My husband is surely a saint, after nursing me through several surgeries, multiple rounds of chemo and numerous recoveries. He was cheery and loving and I am sure I was the perfect patient (ummm, yeah right). I don’t know how to ever pay him back for what he did for me, but I will spend the rest of my life trying, grateful for each day I get to spend with him.
The thing I learned for myself is that it is exhausting, emotional, maddening, sad and heartbreaking, often all at the same time. I couldn’t fix it, make it better, or change the direction of it. Accepting that was impossibly difficult.
The collective experience in my family from the last few years of caring for loved ones has culminated in a few helpful tips listed below:
Ask for help. Trust me, you need it. If someone asks what they can do, tell them. They can pick up groceries, sort the mail, stay with the patient, take them to the doctor. You are in charge, but you don’t have to do everything yourself and people all want to help you, I promise. When we needed help with my mom, we rallied her friends and they jumped at the chance to be of assistance. It made them feel better and they got to spend time with my mom that they likely would not have had otherwise. Now that she’s gone, I am sure those moments are priceless to them.
Don’t feel bad about needing a break. You have to refuel the car to keep it going, just as you need to refuel yourself. Leave for a few hours, do something that is comforting or inspiring or relaxing that is just for you. Don’t do anything for anyone else, just be selfish, it is okay. In a few hours, you’ll go back to the grind and you will have more in your well to pull from, which will keep you going longer.
Try to find 30 minutes or an hour to read the paper, work out, watch the news, play solitaire, anything that can just get your mind off of your everyday duties. The drama of ongoing health issues can make you feel like you are in a bubble of your own creation and you can’t relate to what is going on outside of it. You have to step out into the world for a minute to remember that you are still part of it.
Keep in mind that you aren’t trained to do this, so it’s okay if you don’t know exactly what to do or mess up. You are doing the best that you can, and that is completely okay. Don’t be hard on yourself. You may feel like you can’t do anything right, be it taking care of your patient, your job, your home or your family, not to mention all the other stuff like friends, social events and fun. Just take one day at a time. At the end of that day, if you made it through it, you did great.
Find a therapist or trusted confidant. The support just for you can be so helpful. It also helps to validate that you are allowed to be frustrated, angry, wiped out and over it. You still keep going, but you are allowed to feel what you feel. If you let it out, it doesn’t consume you and you realize that you will get through it eventually.
Taking care of someone else is one of the hardest jobs that we have to do. But that’s what we are here for, to love others and to be loved in return. You will never look back and regret one minute that you spent taking care of someone you love. And they will always be grateful for you.