Just like most everyone I know, my calendar of scheduled appointments gets filled up. Not all of these appointments are work related, some are lunches or dinners with friends. Some of my appointments are self-care and pampering as well. My days are busy. Until something happens with Nick.
Then everything changes in a moment. My view of what is important to do gets honed to pinpoint precision and the calendar is cleared. Usually everyone understands if Nicks day has gone sideways and his health is backsliding, but there are others who express frustration that this has gone on for so long without us having a permanent solution. Those are the clients that I have invited to find another tax accountant.
I do feel a commitment to my clients and to my friends, but my main responsibility is to care for my son.
When the cluster seizures start, we get Nick into his room and then begin our bedside vigil. Our whole focus and attention has turned to caring for Nick, monitoring the progress of the seizures and administering his rescue medicines and his seizure protocol. Our own needs and desires have taken a backseat to handling the current critical event.
Most of us would do this when a crisis happens with our loved ones. The difference with caring for someone who is chronically ill, is that these events arrive often and without warning. Disrupting our work and other responsibilities can cause frustration to those others who need to suddenly carry a bigger load because of the change in our capacity to do anything except to care for the person who is ill.
We have been blessed in our careers, some families lose their jobs because of the time required to care for their family member. Other people we know have lost friends due to meltdowns caused by the stress response in their lives. It can be difficult to have empathy and compassion for others, especially when we don’t truly understand what they are going through.
If you know someone with a family member going through a severe chronic or life threatening illness, figure out how to support and strengthen them. Often little things mean a great deal. Over the years I have received unexpected tender emails, or a plate of homemade cookies, or a bunch of flowers dropped off at my front door. Sometimes I have known who the kind gift came from, other times it was anonymous. It always lifted my spirits and helped me trudge through the mud until the experience was over.
Please share this blog if it resonates with you or you know someone who might benefit from it. If you want to get a copy of the book as soon as it is available, click here to sign up.