How caregiving changed my life and cognitive function

I have a habit of deleting entire paragraphs when I don’t like just a few sentences. Taking a nap instead of cleaning because the mess is too overwhelming. Returning the entire order if only a few items don’t work. I am always all or nothing, but never consistently all or nothing. I am only ever consistently inconsistent.

A few years ago I went to the doctor and asked to be screened for ADHD at 36. I could not focus and have always had a lot of the symptoms - procrastination, distractions and that all or nothing mindset. Plus, time spent on TikTok will have you thinking you have ADHD because of how you blink.

I did not end up diagnosed with ADHD (although my sister, Missy, was diagnosed late in life), but instead depression and anxiety. I guess that would make sense. My mom died unexpectedly in November 2018. My sister, brother and I - all 33 and younger, were thrust into a caregiving role for my dad - someone we all thought would die first. We would always laugh off the “ what if mom dies first?” scenarios at our family dinners because my dad was always the sick one.

My first year of caregiving.

He was diagnosed with Type II diabetes in his 30s. An autoimmune kidney disease in his late 40s. Peripheal Artery Disease. An autoimmune disorder that limited his hand mobility. He stepped off a curb wrong at work in 2003 and ended up breaking his ankle, needing surgery, and eventually getting it amputated 17 months later. He learned to walk again, but never had as much confidence doing so and still needed a wheel chair for long distances. In 2009, his kidneys were in 100% failure, and he had to start dialysis. In 2013, he was walking into work, tripped over a rug and broke his remaining ankle. That was it. No more driving. No more walking without a brace. He could only get up to transfer himself in and out of bed, toilet, etc. All hands on deck to help out my mom, his sole caregiver.

By 2017 his anxiety was so bad because he could not sleep at night. If you have never been able to sleep well because of anxiety, you know that this then produces more anxiety. He had to take Xanax to sleep, and I am sure his body was dependent on it. Those types of drugs are always a risk to dialysis patients because their blood pressure can get too low. One day, it did. My mom received a call that he had to be rushed to the hospital because he was showing symptoms of dead gut - a life-threatening condition where blood flow to your colon is severely reduced, causing tissue damage. He had to have a colectomy and was in the ICU for three days - the first time I remembered seeing a loved one in the ICU. I hate it there.

I was 31 with a 2.5 year-old at the time. My siblings and I were all taking turns visiting him at the hospital, where he was for about 3 weeks. Then he went to a rehab center where he was for another 1-2 months (at least, I can’t recall the time) and my nights and weekends were dedicated to keeping him company, trying to help my mom and bringing him food he would eat. I wanted to have another baby, but couldn’t. And now I was the one staying up all night.

After my mom passed from an infection in November 2018, we thought my dad would give up dialysis and die along with her. He was never supposed to survive her, he would say. He loved us too much, though. So we made a calendar, I filed for FMLA at work, and then I took over his medical care coordination. Which was A LOT of work. He ended up having a heart attack when Missy was staying with him 40 days after my mom died. Which resulted in a hospital stay. He was prescribed blood thinners because of his stents. Those cause GI bleeding. 2 week hospital stay. That caused him to become weak. Rehab stay. Which caused anxiety and depression. Pneumonia. Hospital Stay. Rehab Stay. Infection. Sepsis. Dead gut again. Rehab Stay. Broken Rib - this was all before Covid, too.

I could keep mapping out those few years, but the sad thing is I don’t remember much of it - even before my mom passed. I was going from one thing to the next, just surviving and doing what I could. 2020 was the worst year because as hard as it was to be a caregiver before then, the pandemic caused us to take extra precautions with him. We no longer had any resources we had before - someone to keep him company during the day and transportation to and from dialysis. And we still had to homeschool Rebecca, who had just started kindergarten. My dad was not sleeping at night, so it meant I was not sleeping at night (it was like having a newborn again).

My dad died in December 2020, two years and 20 days after my mom and ten days before Christmas - his favorite holiday.

Sandwich generation

I had never heard of the “sandwich generation” until I was thrust into the role of caring for my disabled and sick father while also caring for a 4 year old. I was talking to a therapist about the complex feelings I had as a caregiver for someone I loved so much, while also feeling like I was failing as a mom and not “enjoying” her younger years enough. All while being considered a “high potential” employee and managing a team of nine employees. But work was also my escape. The only time I felt some semblance of control in my life. She asked if I had ever heard of the “sandwich generation.” Oh, so other people also go through this? Why did I feel so alone?

These "sandwiched" people become responsible for caring for their parents and their children at the same time. They may help their loved ones with daily functioning, medical services and supervision, giving medications, and aiding in financial, legal, and emotional difficulties of their loved ones as well as themselves.^[1][2]

Rebecca,4, helping secure my dad in his wheelchair accessible van

I started our Instagram account, My Sister Made Me Buy It, a year after my mom died. I was sad. I was stressed. I was constantly comparing my life to the lives of other people my age, and always coming out behind. I was constantly in hospitals or spending the night at my dad’s scrolling instagram, shopping and wishing that just one other person was sad like me. None of my friends were going through it. It was just me, Missy (sister), Ben (brother) and our partners. I was incredibly lonely.

I was also incredibly spacey. I have always heard people joke about how “pregnancy brain” never leaves - it just turns into mom brain. Which, I found to be the case. But this was like unlike anything else I had experienced. I felt dumb and forgetful. You know that feeling you get when you realize you forgot something you needed to do and now it was too late? I had that feeling all of the time. And then at some point, that feeling became noise. And I survived by learning to ignore that feeling, and in turn, flakiness became a part of my life. I now know this is called a “trauma response.”

Four Years Later

I am happy. It has almost been an entire year since I left my company after my part-time consulting contract had ended. I am nervous that I am too happy. That I am bragging. Or that I will come home and something will happen to me, James or Rebecca. Why me? Why do I get to feel this way?

It comes with an asterisk. It has been four years since my dad died, and I am unsure I will ever be able to be at the cognitive levels I was pre caregiving. Is it just getting older at this point? How do I get better? How do I become more productive? How do I feel less guilty and shame about it? How do I escape the constant identity crises? ¹ What am I going to do in five years?

I did read two books this year that ended up being five star books for me - five stars meaning I recommend them to everyone. I needed to read them. To know that this is normal. That I will probably never be the person I was before 2018. Being in constant survival mode can take years and even decades to overcome. I don’t want another 4 years to pass and think “what even happened in those years?” I want another 4 years to pass and think “I may not remember everything that happened, but I know I was happy.”

The books:

1. What My Bones Know: A Memoir of Healing from Complex Trauma

   1. I don’t have complex trauma, but reading this book helped me understand trauma better. I learned so much from this book, even though some parts are hard to get through when the author is detailing the abuse she went through. I recommend it to everyone because it is not only a lesson in trauma, but a lesson in empathy.

2. How to Keep House While Drowning: A Gentle Approach to Cleaning and Organizing

   1. From the description: One life-changing realization restored her sanity—and the functionality of her home: You don’t work for your home; your home works for you. In other words, messiness is not a moral failing.

   2. I loved this book for several reasons. The author is a therapist and has ADHD so she writes the book in a format that is ADHD friendly - so you can easily skip sections (and it is easy to see which parts you can skip). It is also very short. I also loved it because it taught me the importance of rest. Even if you are not a messy person, I think we all struggle with feelings of being a moral failure if XYZ isn’t done.

I hope you enjoyed this essay! I have had it in my drafts since August and gently nudging myself to get out of my head and press send.

XX Sarah

1. I do think these identity crises have something to do with turning 40 in 4 months…