My husband is a C3-C4 ASIA A quad. He also suffered a TBI in the accident that paralyzed him. He has a trach and essentially no movement below the neck. He requires 24/7 skilled care mostly due to the trach and need for suctioning which is required to clear his lungs at any time.
I, in no way, ever want to diminish the suffering my husband has, but I am a caregiver spouse. I am passionate about exposing the often invisible struggles that the caregivers face is this whole equation.
In my struggle, the feelings and stress is not just the care giving. It is the stress of being the sole working member of my family of 4. It’s about the responsibility to provide health insurance for my husband and children. It’s about the physical aspect (and in my case all aspects) of childrearing and household work that rests solely on my shoulders. And yes it is about the struggle of providing intensive, on going care or seeing that care is provided.
I personally don’t believe it was God that called me to this. Life just happens. Free will takes over in some cases and others suffer the consequences. I can’t find any comfort in thinking God wants this for our family.
Here is just an examples of a thought that rolled around in my caregiver brain. As I walked along the beach during my weekend off, I felt the warm sand between my toes and the cool water lapping at my feet. The awesome beauty of the ocean was overwhelming but there was such a wave of sadness. How can I allow myself to enjoy something that my husband can never experience or enjoy again? Do I deserve the joy that he can no longer feel? It’s the feeling of being single and alone but in a marriage.
Dan your words are ringing in my head. I think I must take the risk and step into an uncomfortable area. I’m not saying that I am giving up the caregiver me. I just don’t want to give up the other me forever.
And thank you all for responding to my post. This is how we learn from one another.