Caregiver Reluctance

Stepping into a caregiver role for people you have a complex relationship with is scary and hella triggering.

In 2020, during COVID-19, elections, and civil unrest, my father wrote political emails and sent them to the entire family. Our views barely align—he is a MAGA Republican who loves capitalism, and I am the complete opposite. After one email exchange, I outlined how our views differed and that we would never agree on a policy. Therefore, I asked him to stop emailing me his political viewpoints.

After that email- he stopped talking to me and two of my siblings (the Democrats in our family).

In November of 2021, my mother was diagnosed with ALS.  She had been experiencing balance issues for years, so we experienced some relief when she was finally diagnosed- albeit with a horrible disease.

Her diagnosis prompted my father to reach out to me.  He offered to “do anything for me to be there for my mother”- but never apologized for not speaking to me.

After his phone call, I did visit them- normally for holidays when I knew another (Democratic) sibling would also be in attendance.  With the help of my therapist and friends, I began to define my boundaries with my parents- what topics I would talk to them about, what I would share about my life, and never ever talk about politics.  To make the holidays bearable, I would work out and take naps- doing anything to keep my days busy, so I would not be left alone with my parents.

This approach worked for three years until last Monday when all my siblings (even the Republican) and their spouses joined a call to discuss my parents.

My dad’s rheumatoid arthritis is bad.  Really bad.  Supposedly, he needs surgery, but he hasn’t told anyone but my sister-in-law.

My mom is not doing well.  She had Botox in her arm to help with tremors she was experiencing (not ALS-related).  The Botox was too potent and completely numbed her hand to the point that someone needed to feed her.

A few weeks ago, she fell, and my dad had to call EMS because he couldn’t lift her.

The call was for everyone to come together and determine what we could do. They can no longer care for themselves completely alone, nor will they get help. As a family, we determined we needed to get a handle on what was happening and determine what help they needed. But who was best qualified for such an assessment?  Who has the time?

What happened next was seriously a classic, not it-

• My older brother is currently grieving over the death of his best friend, and his dog was recently diagnosed with terminal cancer.
• My sister and her husband have been doing most of the heavy lifting regarding communication with my parents. My sister is burnt out on the situation—rightfully so.
• My younger brother and his wife are not the best at communication and understanding the bigger picture.

So, me, I’m it. 

I’m going to their house and spend the week with them. I’ll poke around, see what help they need, and ask why they won’t buy a van and all those fun things. I’ll become their chef and caregiver for a week (with some new boundaries for my caregiver role).

When I first agreed, I kept saying, “I have to go- nobody else can.”  But I came to realize that I wanted to go.  I need to see first-hand what they need and get a handle on the situation.  I like fixing things, and maybe I can help here.  I’ve been learning about nutrient-dense dieting and reducing ultra-processed foods.  Perhaps I can use this trip to work with difficult people to see if I can help enable change.

But I’m scared out of my mind.  I’m going to be a caregiver for two challenging patients who, for all the great things they did for me, also (unintentionally) caused me a lot of emotional and mental distress throughout my life.

 This coming week will be the biggest test of my life. I’ve been mentally preparing myself for all the possible outcomes and have even planned how to leave if things go bad. 

The conversations we are about to have as a family are hard. Add in the complexity of my relationship with my parents, and next week has the potential to be a great thing or a trip that ends our family relationship.

And I’m not quite sure which one I’m hoping for.