Confessions of a caregiver

Some of us wake up one day with the news that a parent got diagnosed with an incurable disease. Which -with a lot of certainty — will end their life one day, soon or in some number of years.

We scream, we weep, we begin to morn them, but for some of us there is no time, we need to step up and take action. We need to re-organize our lives, our priorities, our finances to take care of them immediately. Some have to move countries or cities, some have to move homes, some have to change jobs or quit working all together. Much more drastically so, if the disease that struck them is Dementia or Alzahimer’s. Most of us has felt the decline some months or even years in advance, but until we hear the doctor utter those horrific words we remain in some sort of denial accompanied by a background worry state. Of all those sudden drastic changes to our lives, there is one that takes the most toll at the beginning, us taking away our parent’s agency. That parent, that giant. Once its done, that moment is soon forgotten, and replaced with a continuous sadness as we see them only disappear months and years on.

They call us the family caregivers, to separate us from the ones we soon learn we have to hire to take daily care of our parent, that is if your parent’s finances or yours allows you such a priviledge.

I like to call us Warriors. Because what we fight for, the choices we need to make for our parents and for ourselves are almost impossible to make.

On top of everything we have to juggle to take care of our ailing parents, we have to also take care of ourselves to last while taking care of them.

Part of those around us expect everything to stay the same, they expect us to work as hard, to go out with them for drinks, to attend that gathering or that wedding, to travel when they summon us to. While others expect everything to change, they think we need to selflessly dedicate our life for sometime to our ailing parent until they are gone, only then they think we are allowed to live again.

And there we lay, between those two extremes, trying as hard as we can to weather the storm. Part of us wants to selflessly give it all, and some of us actually do, another part wants to maintain some form of a normal life to be able to keep standing strong throughout the storm and actually live after they are gone. It’s a long storm.

At every juncture of a sudden decline in their health, or an opportunity we decide to take or let go of, we try to figure out “the right thing” to do. Always torn between our need for self preservation, fear of a future regret, and what would appear to be the sweet thing to do to them. What a horrible guilt-ridden triangle to be stuck with, but that’s the job and its realities. As parents do intensely and selflessly give us all they can in our early years. Yet as one of my close friends always says, that formula is essentially skewed, that whatever we do we can’t give them back the same.

Last night, after a long evening with a buddy warrior and after 5 years of this hell, I decided to give in to that triangle. I will never be able to outsmart it. Inherit in this experience is a set of impossible choices, a warrior should be allowed to make in peace and without judgement from themselves and others around them.

Razan Khatib

Razan Khatib

Playing at the intersection of culture, technology, and values. Trying to structure my thoughts and share experiences, learnings, and insights. Co-founder of @spring_apps
Amman, Jordan