Today I reflect on feeling invisible in my caregiver role.
I was seen and present in the early days of our journey. Partners in this fight with ALS, we will conquer this together.
As the disease progressed and the demands became more uneven. The reality that I was becoming the main support for our family, financially, physically, emotionally.
Our visits to the clinic where a team was ready to support Cliff in what he needed. He would sit and tell them what he wanted them to hear. My description would have been different. I would try to tell what we were experiencing in a way that Cliff wouldn’t get upset with me. They never said “How are you Doing?” I was not a part of the care plan for my husband yet I was the most important person in his life keeping him safe and loved.
It seemed the more I adapted and kept our life organized the more invisible I became. To the outside world we were functioning so well.
I ignored my own needs. If I needed to go to the doctor I was a terrible historian because I wasn’t focused on my symptoms. I could tell them every detail of feeds, meds and changes in my husbands life.
No one said you are experiencing burn out, you need some time and care for yourself. The emotional upheaval to our family would be to much. I can suck it up and keep moving forward.
I would get angry because Cliff would get all the attention and I had spent hours getting him dressed and looking handsome. People would talk to him and not acknowledge me. Was I invisible?
What I learned was that I was such a great actor, I had everyone fooled, even myself. I have this all under control and that is what the outside world would see.
Wouldn’t it be a wonderful world where the caregiver was part of the care plan, that self-care and peer support where introduced early as part of the team approach. That the stronger the caregiver is through this honour to support a loved one, sets them up to navigate the new reality to move through grief and rebuild their lives after their gift of caregiving is complete.
Wouldn’t it be wonderful for the government to recognize this need and create programs to support caregivers?
You are not invisible! I see you!