About Debbie the Caregiver
I made my entrance into the world of non-professional, family caregiving when my Mom was diagnosed with Stage 4 lung cancer at 74 years old. Up to that time, she had been very healthy and mobile, hadn’t had any need for meds (other than vitamin C or calcium), and had been living independently and enjoying her retirement.
As for me, I was a hard-driving business woman, advising multi-nationals on their marketing strategies, primarily for the Japanese market. My domain was research, planning, business development … not healthcare (unless from the marketing viewpoint!).
There’s something riveting about a life sentence ...
... my Mom was given 1.5 years. It sounds like a long time until it’s all you have.
At first, we all rallied together as a family – my Mom, my two younger sisters and I – and we got through the first 12 months doing things that we knew my Mom wanted to do (visiting the nearby Blue Ridge Mountains, driving further for a beach trip to Isle of Palms, having long overdue family and friend gatherings, etc.), while she struggled through two rounds of chemotherapy. It was hard, but there were three of us (one living nearby), and we were able to give my Mom all the support she needed. At this point, we had most of the skills we needed to deal with the demands of caregiving, just by being naturally caring human beings and daughters.
But the last 6 months – that's a whole other story.
After the first year, both of my sisters’ family/medical leave had run out, and we were starting to feel an absence of options. My Mom wanted to “die at home,” and we wanted to help her to do that. But how? In the end, I was the only one with the flexibility to work from home – and it was clear that my Mom needed someone living with her to help her and make sure everything was safe and comfortable.
So I moved back to my Mom’s in South Carolina from Tokyo, where I’d been living and working for 24 years, and ran my business from the dining table where we’d all eaten when I was in the 3rd grade.
And it was the hardest 6 months of my life.
I know after hearing hundreds of caregiving stories and scenarios that our situation was about as good as it gets.
- We had a good plan; in fact my Mom had made us talk about it long before she ever got cancer. And once she was diagnosed, she had upped the ante on making sure that all plans were in place, and that I, as the eldest daughter, knew where everything was and exactly what to do with it.
- My Mom was well prepared with her insurance coverage, including “long-term healthcare,” which allowed us the advantage of being able to hire professional support (Certified Nursing Assistant or CNA) to help us during the last 6 months.
- The duration of my Mom’s need for caregiving was 1.5 years, less than half of the national average.
- There were three of us siblings – and my middle sister is actually a respiratory therapist, so she was able to serve an important role in helping us all get up to speed.
- AND we three got along and did not implode. We have always been close, but the caregiving situation can be very challenging, and old wounds from childhood – with both siblings AND your parents – tend to come on out.
But I’m going to say it again – IT WAS HARD!
We had some really wonderful times, and we absolutely made the most of my Mom’s remaining time.
We closed out a few old wounds and conversations – but some bitternesses remain, even now. Maybe they weren’t meant to be fixed, but I find myself still dealing with them! And I deeply regret that I personally did not have the skills or tools to try to make more of the situation, while my Mom was still alive.
I’ve done quite a bit of work, both during and following my Mom’s passing, on having difficult conversations related to death and dying, and have spent countless hours interviewing caregivers at all stages in the journey, and researching the caregiving landscape so that I can offer you a fighting chance at making your caregiving journey the best it can be ... literally, one step at a time.