Facing The Unthinkable: Caregiving as a Chronically Ill Daughter
Recently, my mother, who is 83, had her knee replaced. The surgery went well and instead of sending her to rehab, she was sent home to recover. I went over to help her daily with repositioning her pillows, getting her mail, her lunch… Easy stuff. But then the unthinkable happened. Mom fractured her back reaching to take off her socks. Yup. Taking off socks sent me to a place I’d never considered as a chronically ill person. Being a caregiver. And as the person who usually needs care, I feel totally inadequate to the task.
You see, I have already experienced the pain of a fractured back. Two to be exact. And I have a chronic degenerative disease as well. I exist in a world of pain. But now, my mother does too. And though I have two siblings, I am really the only one capable of caring for her. Me. The sick, weak daughter on permanent disability with lifting restrictions. This is so far outside of my realm, it would be laughable if it weren’t true.
But it is true. Mom needs me. I’m available and believe it or not, I am trained to do this. My entire career was based on assisting those with disabilities. And I did it well. Until I became disabled myself. I gave up the career that brought me so much joy. And having done so, it never occurred to me that I would be needed that way again. My mom, though older, has always been healthy. Until now.
So how do I reconcile my needs and hers? How can I consider not doing for her even when my body is wracked with pain? And how do I explain or expect her to understand when my body gives up and she still needs more from me? I love my mother and I know raising me was not easy. I absolutely want to be there for her in her time of need. I always have. I just didn’t expect to be sick when the time came. But I am sick and she is injured. It’s a perfect catch 22.
And there is no perfect solution. I take care of her phone calls. I fight her insurance company. I take care of her house. I water her plants. I go to her rehab and make plans for her to come home. I make her bed. I do her laundry. I lift her and position her when she cannot do it herself. I help her shower. I help her go to the bathroom. I clean what needs to be cleaned. I go home and crawl into bed with my pain and my medicine and think how much more I should be doing. How much more I could be doing were I not so damaged by disease. Then I wake up and go back.
I don’t know how long it will take for her back to heal and her independence to return. And I don’t know how long I can do all the things I am doing. I have taken days off while she is in the rehab facility so I can convince myself I’ll have more to give when she comes home. But day to day, my abilities are a crap-shoot and her needs are consistent. So I keep doing and I keep questioning.
I know I am forgetting things and I know things are not being done how she would like them to be. I sleep too much and do not get to her early enough. I also know that I am giving more than I am and it’s all I can give. So I have to be the one to accept my limits and know its ok. She’ll have what she needs if not all that she wants. She’ll be taken care of until she can do so herself. Because she is mom and she deserves it.
And I will face what inevitably we all face at some point. That personal judgement and expectation we put on ourselves as ‘Chronically Ill’. As parents or spouses or friends or children who are “SICK”. Who question whether we are good enough at any or all of the above.
I say we are. We are good enough parents. We are good enough spouses. We are good enough friends. And we are good enough children. We are not perfect. But we are good enough!