Dan Harding was 19 when he became a caregiver for his mom and younger brother. 15 years later, he realizes most of his early anger masked uncertainty and fear.
Today, he explores his emotions at the beginning of his caregiving journey, particularly when his mom and brother were diagnosed. Reflective and honest, Dan includes advice he wishes he could tell his younger self.
My entire world changed before I was even 20.
I was 19, living in Spain, and playing rugby for a living. My life had very few worries back then, apart from one thing. At odds with the cheerful Spanish sun, this issue had been a dark cloud over my family's head for months.
My mother had been sick for several weeks. It looked like a nasty bout of flu or an infection. Whatever it was, it wasn't going away.
We were a close family - just me, my mother and her partner, my sister, and my younger brother, who was only 2 years old. I lived away from the family home with my partner at the time, but our relationship was still tight-knit.
My mother's condition started to get worse and worse, so she started seeing more doctors. My two-year-old brother, Ramón, was also showing signs of learning difficulties, which was another worry.
Before I could process all these sudden twists and turns, my mother had been admitted to the hospital. Our usual level of communication stopped. I heard very little from her - or her doctors - for a week.
My mother finally received a diagnosis
The next piece of information we received wasn't via direct contact; my mother asked a family friend to visit her. My sister and I were furious. We felt like we were being kept in the dark. Both of us were worried, confused, and had questions. We wanted answers!
Looking back, I realize the anger was unnecessary and misplaced. Perhaps my mother wanted to protect us for as long as possible. Maybe the whole family were as lost as my sister and me.
The same family friend came to the house after the hospital visit. I remember the weather being moody, almost. Very dull and grey, a marked change from the usual Spanish climate. Passers-by seemed somber, their liveliness sapped to match such a gloomy day.
In hindsight, the day's odd colorlessness fitted the mood very well.
John - the family friend - explained that our mother was very sick with cancer.
I was worried and scared – but angry too
After hearing the news, the anger built up again, even stronger than the shock or sadness. I was resentful that my sister and I weren't the first to be told - it felt like we'd been kept on the "outside."
John did his best but didn't have all the details or the knowledge we needed. He couldn't answer many questions; he simply had the unenviable task of delivering the bad news.
I remember asking if we needed to be tested for anything or if the cancer was genetic. Most of my family smoked too, and I couldn't believe what they were doing to themselves. What if smoking had been the cause of Mom’s illness?
Mom’s multiple myeloma couldn’t be cured
A few days later, Mom came home with more answers and more information. Her official diagnosis was multiple myeloma. Multiple myeloma is a type of cancer that affects the spongy center in your bones (bone marrow). It gets the name "multiple" as it often impacts several body parts at once.
This type of cancer causes paraproteins to develop in the blood, weakening the bones and blocking the production of healthy blood cells.
Multiple myeloma doesn't have a characteristic tumor or lump, unlike some other cancers, nor many symptoms in its early stages. Often, doctors can only know of its presence via a routine blood or urine test, followed by a bone marrow biopsy.
To this day, multiple myeloma is more commonly diagnosed in men or adults over 60. My mother was only 40, so this was a fairly rare case.
90% of Mom’s blood cells were infected with myeloma. There’s no cure for multiple myeloma, only treatment. As the doctors told us, it would take a miracle for her to survive much longer.
I was no longer “just” Mom’s son – I became a caregiver
Then and there, everyone decided to pitch in and help my mother as much as possible. Some of us cleaned the house while others helped set up her room for her return.
Nobody stopped to think about what this diagnosis meant for themselves or how the future would pan out. We were suspended in the immediate moment, looking neither forwards nor backwards.
Two months later, we had begun to adapt to our new way of life. My brother, two-year-old Ramón, however, was still experiencing difficulties.
Over the last six months, we'd taken him to various doctors and early development professionals. The diagnosis finally came through - Ramón had a subset of autism called "nonverbal autism". 25% to 50% of children diagnosed with autism are in the nonverbal subset.
Before my mother was diagnosed, I hadn't spent much time with Ramón. I was 17 years older, lived with my girlfriend, and had a job which required travelling all over the country. I'd always seen him as no different to any other toddler. Perhaps a little shyer and with a preference for his own company.
When we discovered his diagnosis, I mentally put it on the back burner for a moment. Mom was so ill, and she was at the top of my priority list.
The news seemed to hit the rest of the family much harder. I wasn't sure what autism was, and Mom’s myeloma was enough new information to process right then.
Thankfully, my mother knew how much support Ramón would need and the importance of early intervention.
Every day brought a new challenge and more emotions
This was a challenging period in my life. I didn't reach out for help or talk to anyone. There weren't many facilities for caregivers to get advice or even vent. I had so many mixed-up emotions and was too stubborn to read up and learn.
Most of all, I was angry. It seems shameful to admit this, but anger overpowered most other feelings in the early days. I resented my mother for not telling us about the myeloma as soon as she found out. I was angry at everyone else for not listening to me when I asked questions or raised concerns.
15 years later, I wish I'd looked at things from a more understanding point of view – of myself and others. Everyone was stressed, worried, and had their own lives on top of everything else.
My questions and concerns probably did register. In truth, nobody knew the science or couldn't explain it simply enough. Likewise, caregiving was as new to everyone else as it was to me.
And technically, I was still a teenager. When the older adults around me had to answer with "I don't know" all the time, it may have made them feel helpless. People want to feel like they have some control, even when things are out of their hands.
3 things I wish I’d known before becoming a caregiver
If I could give my 19-year-old self some advice now, it would be:
1. Take time to think about your needs
You're not invincible and not expected to be, so look after yourself more. The world hasn't stopped turning.
2. Evaluate your mental state
I know you feel angry, but there are deeper emotions you're not dealing with. Talk to someone you can be honest with and don't need to put up a "front" for. They can help you work through this.
3. Find an outlet for your anger
Anger may give you energy right now, but it will drain you over time. Don't bottle it up - find a release with a hobby, an interest, or by talking with friends.
At 19, I doubt I'd have listened to any of this. Still, it doesn't make my advice untrue. If you're reading this and relate, please make sure you ask for some help. Talking things through with a therapist or an online support circle can lighten your load. Don't give up everything you love doing or abandon your interests.
Sure, your situation may mean making compromises or adaptations. How your passions play out may not be exactly what you pictured. But doing something - no matter how sporadically or erratically - is better than putting a halt your future.
The way I see things, few problems in life remain unsolvable. It's about experimenting and finding what works.
I hope this piece, and the ones that come after, can help you and me on our respective caregiving journeys.
The information presented is solely for educational purposes, not as specific advice for caregiving or managing mental health. Please consult with a professional who can apply best practices and appropriate resources to your situation.
NPS-ALL-NP-00636 JULY 2022