I just read an article on a NY Times blog, After the Caregiving Ends, and although my caregiving journey will not be ending for a long while, it hit home since some of the people interviewed were able to put into words what I’ve been thinking. For example, the gentleman interviewed about caring for his father, Darren Walsh, was hesitant to talk about himself since what his dad went through was what he was focused on. This is so true and what makes this blog so hard most days. My life is wrapped around my husband and his injury and his care. It has made me who I am today. But it is incredibly difficult to talk about what I go through and why I am the way I am now because of what the quad deals with on a daily basis. I have it easy compared to him. I can get up and get a snack when I’m hungry. I can hug the kid when she’s sad. I can take a shower whenever I feel like it. I have the luxury, and yes I consider it a luxury, to walk and run and be able bodied. The quad doesn’t have this and because of it has had to figure out how to live this new life and his struggles are far harder than mine. But part of this journey and blog is realizing that although his struggles are harder and different and he’s amazing to have overcome them and live his life well, my struggles as a caregiver are hard and I’m amazing too.
It feels weird typing that.. I shy away from people telling me I’m amazing (unless it’s another caregiver since that tends to be easier to take). I have been called superwoman. I hate it. I’m not comfortable with it. I’m just me trying to help my family live the life we want and deserve to live. It is our birthright to be happy and I am ensuring that we are and I do not see it as being superwoman. I’m just doing what needs to be done and I think that most caregivers would agree with me on that one. they are doing what needs to be done for their loved ones. I love the quad. There is nothing I wouldn’t do for him. Yes, this is harder than anything I’ve ever imagined in my life. Yes, there are days when I want to quit. Yes, there have been days when I’ve hit rock bottom and never got out of bed. But in the end, I will keep going and do whatever I need to do for my husband.
But caregiving is hard and, like Darren said in the article, a process. He says that ‘One of the things he learned is that it takes time to process the experience of caregiving. “It’s almost like your brain is careful not to open up the fire hydrant” of emotions, he said, and “it lets it trickle out in bits and pieces.”’ This is so incredibly true and one of the reasons why our situation is so much more difficult than most. While I’m trying to learn how to be a wife and caregiver, I’m also dealing with the emotions that come with this loss. What we both experienced with the quad’s injury was a loss; loss of movement, loss of what we saw for our future, and loss of independence. Because I’ve put myself on the backburner, I never really took time to deal with the emotions that came with the loss; denial, anger, sadness, acceptance. In order to move forward with life, those emotions need to be dealt with and the caregiver needs to acknowledge that it is indeed OKAY to deal with them. It is okay to be angry. It is okay to be sad. It is okay to feel guilt. It is okay to feel all of those since they are normal. It is also okay to accept finally. I’ll admit it. That one was the hardest. As a caregiver, you will deal with all of the emotions over and over and over and over again until you hit the final acceptance. Even then, they will still creep into your life but at this point, since I have accepted things, they are easier to deal with and I acknowledge them, deal with them and move past the feelings.
The emotions that go with caregiving are what I want caregivers to recognize. You are going to have them even if you fight them and honestly, fighting them just makes the worse. It is normal to feel these and as a caregiver, to be the best caregiver you can be, you need to deal with them. Let yourself grieve. Let yourself heal.