An Open Letter to Caregivers

This is a post by Julie Ryan on Counting My Spoons. 

Off and on for the last 8 years I’ve been the one needing care. I’ve struggled as a patient, but I never knew how much my caregivers struggled as well. I only saw my pain and my struggles. Recently, that has changed. I’m learning what it’s like to be on the other side and just how hard it is for you.

I've been the patient more than I care to admit, needing care, needing help, yet at the same time not wanting to accept help because admit that I needed help. I fought tooth and nail to remain independent. Sure, I saw my husband get frustrated when I wouldn’t ask for help, but I never really knew just how frustrating it was.

Earlier this year my mom was diagnosed with cancer, as a result she had a full hysterectomy and will start chemo shortly. Suddenly, the roles have changed and I’m the caregiver for someone as fiercely independent as I am. I’m watching her overdo it the same way that I did. I’m seeing her get frustrated at needing help, at her inability to do things that she’s always been able to do.

I have never wondered where I get my need to be an independent woman, because that’s the role model that she set and I’m thankful for it. I watched this woman change out electrical outlets, hang sheetrock, paint, and do anything that needed to be done around our house. For the last 10 years she’s not only worked full time but has been the primary caregiver for my step-dad and at times a secondary caregiver for me.  This is a woman who can do it all, but now she can’t. Hopefully, that’s only temporary.

Unlike my mom, I am NOT a caregiver by nature. I never had children because I knew I wasn’t cut out for parenting. So, being a caregiver is new to me. However, in the short time that I’ve had to take on this role I’ve gained a unique perspective.

As the caregiver I want to be there with her all the time to make sure that she doesn’t overdo it. However, as a patient I realize that she needs to maintain her independence in order to have some hope and to keep fighting. As a patient I know that it was when I reached that place where I could do the least that I almost lost hope completely and the depression hit. I’ve read and heard so many times about elderly people just giving up when they no longer are able to do for themselves. I don’t want my mom to give up, so I keep this in mind and try to give her as much of her independence as I can. I think it’s probably like having a teenager. You want to protect them from the world, but you know that for them to grow into a functional adult you have to give them freedom. So, instead of staying at my mom’s house I made sure they have coming in daily to do the things that my mom really shouldn’t do but still allowing her the freedom to do the things she can when she feels up to it.

As a caregiver I want to make sure that she’s doing everything she can to encourage healing. If it was up to me I’d make all their meals (to ensure they were healthy), I’d be there 24/7 to make sure she’s eating properly and that she’s resting enough. As a patient I realize that that would likely drive a wedge between us. I also realize that she has to take responsibility for her own health. She’s an adult she can make these choices. They may not be the choices I’d like her to make or that I’d make for her, but the truth is that they are probably the choices I’d make if roles were reversed.  I also have to give her the respect she deserves and know that she will make the best choices she can because she does want to heal.

As a caregiver I want to talk to her about all the info I’ve read. As a patient I know that she’s an adult and can Google just as well as I can (sometimes better). When she’s ready to talk about it she will. However, my bringing it up is likely to overwhelm her and add stress to her already too stressful life. She has a whole book the doctors have given her of info on how to deal with the various side effects of chemo. She knows what kind of cancer she has. She doesn’t need me to pile more info on top of her already overloaded brain.

As a caregiver I want to smother her with my love because I’m scared. As a patient I know that I can give her all the love I’ve got but I have to be careful not to smother her. I have to remember that smothering her could scare her and she doesn’t need more fear in her life. She is scared enough so I have to be the strong one right now.

As a caregiver I have to remember that I need care as well. Even if I wasn’t chronically ill, I’d need care because we all do. I’ve watched my mom for my entire life sacrifice herself, putting herself at the bottom of any priority list she makes. I want more than anything to be able to do the same for her, but I know that I can’t. I know that if I don’t take time for myself, don’t make sure that I rest well and that I refill my own cup, I won’t be able to be there when she does need me. This means making sure there are others who can help with her care so that I’m not having to do it alone.

Being a caregiver is not an easy task. As a patient we often to take that for granted. We don’t always understand why you say or do the things  you do. Sometimes we just wish you’d go away (but we have a hard time saying that). So, to all the caregivers out there, we know you love us, but please remember to give us space, give us our independence, give us love, and don’t forget to take care of yourself as well. We know that we sometimes take you for granted, but please understand it’s only because we are wrapped up in our pain and because of that it’s often hard to really put ourselves in your shoes.

To all the caregivers out there, Thank You. You are doing a great job and we love you. Please remember that while you are taking care of us, you have to remember to take care of yourself.

Be sure to check out for stories of self care and info on how you can join the movement.