My husband has a spinal cord injury. I have been his primary caregiver for over five years. During that time I have dealt with more than almost everyone I know... I deal with a much different level of stress than others around me. Now, note that I didn't say harder or higher level of stress since well, I don't know if it is or not but it is different. Being a caregiver is a different stress than being a parent or being a spouse. Caregiving stress is different than work stress and home stress. Caregiving stress ties all of those different stresses together and weaves in another stress that ebbs and flows like the tide through my life.
One of the hardest things for people to realize is that they are not the only one dealing with the situation... We, as human beings, think that we are the only individual who knows how the situation feels. Well, I've been realizing more and more that I am not. I really am not. There are some many people, women especially, who know what I'm going through and who know what I'm feeling. There are women out there who have children and know the pains of being a mom to a kid who has a dad with a disability. There are women who are trying to figure out the best way to be a caregiver while also being a wife.
I am not alone.
So why do I feel alone?
I do. I think we all do. As much as we, the ladies in my online group, are starting to share our feelings, we still feel alone because, in our daily battles, we are physically alone. Yes, having someone there to listen and understand is fantastic and has helped us all in more ways than we can imagine. But still, we feel alone. We feel alone because our spouse, our partner in crime, our life partner, our best friend, is paralyzed.
Trying to explain how this feels to others is almost impossible. It is... How do you explain that you can sleep next to someone and yet feel so alone? That you can talk to someone, be in their life, deal with their injury and everything that comes with it and touch this person every single day and yet feel so far from them at the same time? That you can still love that person with all of your heart and yet feel so empty? Things like this are impossible to explain and impossible for others to understand. So we all still feel alone.
On top of dealing with marriage problems, there are caregiver issues. It's hard focusing on being a wife while you're doing your husband's bowel program. It's hard being a wife when you are dressing your husband. It's hard being a wife when you are feeding your infant and your husband at the same time. Yes, we have a child. A daughter. She was 6 months old when he was injured. So, on top of caring for my husband, I had to also care for our child. Alone. No breaks from middle of the night feedings. No breaks from changing diapers. She cried, I answered. Being a parent, a wife and a caregiver is sometimes darn near impossible.
We all feel empty and alone. I will admit, thankfully, that those feelings are starting to fade. I am lucky. I feel this way less and less and feel fuller and happier than I have in years. I am lucky. But there are so many out there who are not and who feel numb and alone and empty.
If you know a caregiver, any caregiver, know that although surrounded by their family, they may feel alone. Reach out. Listen. Talk to them. Know that these feelings may last for years... They do not go away easily. But we do not want to feel alone. So be there for us, if you can.