Caregiving is Exhausting

April 7, 2021

Today I think of caregiving and how exhausted I was. I was not prepared for the helplessness I felt. Of course no one knew how tired I was. I put on the mask of everything is under control.

I can reflect back on that time and wonder how did I think I could be a full time caregiver, work full time, raise our family with the physical and emotional demands for years not months. The fact is it happens gradually, my focus was on everyone else. I somehow thought I would appear selfish or be judged if I wasn’t taking care of my family.

I sit here this morning and think of the energy it took to get everyone ballgame, soccer, clinic appts. To get us all ready, into the wheelchair van and arrive looking like the poster family for this is how you can rock ALS.

I reflect on the warning signs that I ignored. I knew they were there because 18 years later I can still recall them. I thought I was giving 100% at work, in reality I was giving 100% of what I had left. I remember thinking someone stole my purse at work. I looked everywhere. I called security. They found my purse exactly where I always put it. I was embarrassed and cried.

Driving home from work I would routinely nod off while driving, open the window let the fresh air in. I was a danger to myself and other drivers. I wanted to go to bed to sleep all night with out turning and tube feeds. I felt physically ill. I ignored these warnings.

I was awakened to change when I saw my daughter cowering in the corner and emotionally upset. That was my lightbulb moment our family is in crisis. This is affecting our children.

I wonder if I didn’t have children would I have listened to the warnings my body and mind was giving me.

Would I have ended up a fatality in a car crash? Would I have ended up with physical and mental health issues because I ignored my self-care?

I do know once I realized I too needed support I began to heal and get the rest and support I needed. How much lighter I felt to simply talk to a therapist or trusted friend just to release the thoughts and to hear my voice. To journal my thoughts and release them to the page.

My mind became clearer to be creative with ways to organize our schedules. Our family time became more joyful, we all were rested and present.

I love my family and was honoured to be my husbands caregiver. What would happen to me if I ignored the warning signs for my own needs. Who would be there for my children?