Remember…Blame The Disease, Not The Caree!
Nov 14 2012 in Caring for Partners by Chris
When I was a kid, one of my favorite roller coasters was the Zephyr at the old Pontchartrain Beach amusement park in New Orléans. Those steep curves and big drops were exhilarating, especially when the car made the turn to come back to the station, when for a moment you thought that you were going to fly into Lake Pontchartrain only to feel the car make that big pull to the left at the last second and head back to home base. They do not make roller coasters like that anymore!
Being a family caregiver at times is like riding a roller coaster: up the hill, down the hill, swaying through the curves that caregiving brings to us on a daily basis. I know I must have ridden the Zephyr over a 100 times in my life, so I knew what to expect and could anticipate the bumps and curves as the car sped down the track.
Caregiving can change at a moment’s notice and without any warning. When your anxiety heightens, that is precisely the time when you have to be calm in the presence of your caree. All of a sudden, those steep curves look ominous; those hills become daunting.
- When your caree lashes out at you, take a step back and assess the situation; more times than not, it is the disease talking, not the caree.
- Be attentive, not condescending.
- Be proactive, not reactive.
- As a caregiver, remember you are not the one who is sick.
‘The Little One’ taught me this lesson as he related stories of being a caregiver for his partner Herman who passed away in 1999 from Alzheimer’s. “As mad as I would get with Herman, I had to remind myself that it was the disease talking and not the man who I had known for 43 years.” Over the last 48 hours, I have been reminded of this story quite a number of times as we are currently in the mist of change with ‘The Little One’s’ health. We never know when the tumor is going to act up, but when it does, it takes its toll. We are hoping that ‘this roller coaster’ gets back on track and pulls into the station .
When riding the Zephyr, I could anticipate the bumps and curves on the track, and I knew that I would always end up back at the station. However, our health and well-being is not so predictable. So when those bad days surface, we both take comfort in knowing that it is the disease, not the person. Mindful that the person you love and care for will always be inside your heart no matter what is inside their body.
You see…We Might Have Cancer…
But Cancer Does Not Have Us!


Denise said on November 15, 2012
Hi Chris–A good reminder that can be hard to remember. For a caree with dementia or other cognitive impairment, it often can be the disease process. In other caregiving situations, sometimes a caree lashes out simply because of stress or not having effective communication skills. Be aware of triggers that you both have (to the environment, to the time of day, to the activities of the day). Understand what happens just before you both reach your limits so you can takes steps to prevent the blow-ups. Setting boundaries is also critical.
Chris said on November 15, 2012
Hi, Denise…Setting boundaries is crucial, especially when you are in the heat of the moment because that little voice in the back of your head can trigger positive or negative emotions. We always want to stay with the positive emotions!
Pegi said on November 15, 2012
Chris, I love your analogy with the roller coaster, its so true. You have hit on numerous points to ponder especially your “its the disease, not the caree..”
Your bullet points are spot on. Hope all the the best for you and “the little one” as you’re going through your current changes.
Chris said on November 15, 2012
Thanks, Pegi…’The Little One’ is better today, he is a man with many lives!
Bette said on November 15, 2012
Hi Chris,
Such good reminders. In remembering, they help to keep the track as straight as possible in caregiving. The turns are so hard to ride sometimes – but keeping ourselves in check is always a help.
Hoping that “Little One” is having a good day.
Thinking of you both.
Chris said on November 15, 2012
Hi, Bette…
‘The Little One’ is much better today, so the roller coaster has pulled into the station peacefully for the moment. May the ride continue to have a gentle breeze at our backs!
ejourneys said on November 15, 2012
Hi, Chris — Am glad and relieved your roller coaster is at rest. (Love the analogy — your Zephyr was my Coney Island Cyclone.)
I remind myself of this daily — like today, when my partner was trying to convince the pharmacist that the steroids she had stopped taking topically on her toe two weeks ago were still affecting her scalp from the contrast medium she had received 30 years ago. o_O Thank heavens for patient pharmacists. (He had to see another customer, but then came back.) I try to stay calm through her emotional roller coasters.
Wonderful bullet points! And you and TLO look fabulous in your tuxes and bow ties!
Chris said on November 16, 2012
Hey, E-J…TLO wanted me to tell you that the Cyclone on Coney Island was his favorite ride too. He also mentioned a ride called The Thunderbolt…
I prefer these roller coasters than the ones that caregiving deals us, but what would we do without our career?
Glad you like the Bow Tie Guys!
Jo said on November 18, 2012
Excellent post Chris, a needed reminder, thank-you!