You know it’s important to build your support network when you’re caring for aging parents. But, did you realize that over the years, you will have to re-engage, rebuild and continually nurture that network? That fact hit home in a big way for me over the past few months.
My mother was diagnosed with stage 4 colon cancer a year ago. After surgery, radiation and ongoing chemo, she declared that she would “fight ‘it’ to the end.” We were thrown into a world of new specialists. We often found ourselves on what seemed to be a medical rollercoaster. Despite each new challenge, I still thought I had a great support network in place. I was so wrong. And it all came to a head in January. I hope my “lessons learned” will help you in your caregiving journey.
Here are a few of the problems we experienced:
- Because I live 600 miles away, I had hired a wonderful geriatric care manager (a former RN) over a year ago. She had been going to appointments with Mom and coordinating care. Well, her workload got heavy, she got ill and was “off the grid” for several weeks. We slowly and then completely lost her support.
- Mom’s senior community’s transportation system got overwhelmed. Her transportation was often delayed and she ended up being consistently late for doctor’s appointments…with the doctors becoming frustrated or having to reschedule appointments.
- The nurse practitioner she went to for minor illnesses misdiagnosed several problems. Example, she was diagnosed with allergies and given nasal spray when she had pink eye. And, why oh why, do these problems always crop up late Friday afternoons?
- The last round of chemo left Mom with a severe yeast infection but she was weak and fearful of falling, and had stopped showering which really exacerbated her skin problem.
In retrospect, I ask myself, why didn’t I step in sooner? But, as most of us do with busy lives, we address each problem as it arises, and think life will get better. One day I realized, despite the nasty winter weather and my work load, I had to just drive out and help Mom.
When I arrived, I realized that Mom’s health and living situation was much worse than I had even imagined. I also realized I had to re-engage the support network I built 5 years ago. Our network and my mother’s needs had changed drastically over the past few years.
Here’s how I re-engaged our support network:
- Went with Mom to her new oncologist and explained that I was there to help Mom explore her options. There was great benefit in doing this. The doctor took the time to explain mom’s condition and options to consider. It helped Mom take a step back and think about her choices. I asked the doctor, “Can Mom travel to see her grandchildren and great-children?” He said “yes.” Mom told me later she thought she would never be able to travel again. Talk about attitude shift!!!
- Invited our wonderful geriatric care manager (GCM) to a face-to-face meeting. There we were once again, our team, getting up-to-date on mom’s situation and sharing our expectations/needs. Our GCM left with calendar updates and action items for Mom.
- Contacted the administrator of Mom’s senior community and shared some of the transportation challenges that Mom was consistently facing. During that same conversation, I learned that mom’s community was licensed to allow one of their nurses’ aides to help shower Mom after I left. It was the very aide who had previously helped Mom in rehab. Mom, happy again!
- Took Mom back to her home church where she re-connected with her old church friends and her 3 closest friends from the old days. Mom was truly amazed by all the old friends who greeted, listened to her and offered help in the future. That was an uplifting time for Mom and me.
My advice: Don’t wait for the next crisis. Take the time now to assess your support network. What changes have there been in your loved one’s life and in the lives of those who support you? Reach out now. Re-connect, re-engage and give grateful appreciation to those special people!
