This quote this morning was so real to me. I was in the place of, Where did Donna go?
It happens so gradually you don’t see it coming until you hit the wall and realize you have disappeared.
Within my caregiving I was unaware of my need to care for my own needs as well. In the early days of diagnosis we were managing the changes together. Still able to live life as a family and life was good. I had my time to take photography classes, swim and visit with friends. As mobility and physical needs change you adapt to the changes in routines and the demands of taking on more responsibilities.
The activities I use to do for myself for fun dropped off. No time to swim before work. No time to maintain friendships. No time take night courses of interest.
There is no thought about myself, I am focused on the responsibilities that are in front of me. Every week there seemed to be a new change and the need to analyze and adapt to the change.
I went into this journey with such hope, I can do this, I made so many promises to the man I loved. The reality is that I had no idea what this caregiving role would take from me. I didn’t realize I would be the glue that held the family together. I would be the emotional support for my husband and the kids. I remember him telling the doctor, I don’t need counselling, I have Donna. I am thinking ok another role.
While caregiving I was so focused on the day to day demands there was no space or energy to think of my needs.
Looking back now if I only had been counselled on the importance of self care and that it is part of the care plan to block in time for myself to do what brings me joy and purpose.
Maybe I would have been able to keep him home longer or we could have managed the emotional exhaustion and walking on eggshells.
Where would the world be without the love of caregivers and the support we freely give. Wouldn’t it be wonderful to have a healthcare program that included the caregiver in the care plan of their loved one. Programs of peer support and acknowledging the importance of maintaining self-care routines without guilt. This would support everyone in a beautiful way. A team approach, the caregiver would have the foundation to support themselves through the demands of caregiving, managing the grief after the loss of their loved one and the ability to move forward to rebuild their life.