12 Crucial Lessons Learned from Coordinating Eldercare

I'm on my third iteration of managing care for an aging parent

1. My Mother

My foray into this space began about eight years ago when my 87-year-old mother started to mentally and physically decline. Her husband of 15 years, who was her primary companion, needed help caring for her. She had no plan for her final years and attempts to talk to her about it were always followed by silence, a sudden change of subject, or an angry outburst.

The author with her mother in 2017, courtesy of the author

As her only child living within driving distance, I accepted my role as her advocate and care coordinator since I had the skills, judgment, and personality to be effective. This care coordinator role included:

• Building and managing a care team. Initially, I hired a "companion" who lived a few blocks from my mother's house. Over time, the team grew to five people covering 14 hours a day, seven days a week. I primarily used care.com to find candidates to consider.
• Filling in for care team members who didn't show up for their assigned hours
• Coordinating medical care using my Power of Attorney (POA) and Medical POA authority
• Performing and delivering the weekly shopping
• Coordinating home hospice at the appropriate time

I spent time daily managing my mother and her care team. My mother's husband continued to provide companionship and some oversight which obviated the need for 24x7 care.

2. My Almost-Dad

When my mother passed away in June 2017, her 94-year-old husband, Sy (whom I refer to as my "almost-dad") was lonely and inconsolable. I continued my care coordinating role for Sy since he had no immediate family nearby, and we had become close during my mother's illness. He was healthy and functional, although he had stopped driving several years earlier when his license got revoked (yes, I initiated the revocation to keep everyone safe). He was adamant about remaining home, so the care team continued coming to his house, although we reduced the hours and the staff.

The author with her almost-dad in 2019, courtesy of the author

My attempts at getting my mother into a home hospice program were futile until just days before she passed away, which was very frustrating. I wanted my almost-dad to benefit from those services much earlier, so I set up admissions visits to recur every two months until he was accepted. I studied the criteria and found which health conditions could lead to his acceptance into the program. He received home hospice benefits for over a year, including medical care, supplies, medications, and regular help with primary care.

My care coordinator role was similar to the one I played with my mother, including managing the team and coordinating care as the POW and Medical POW.

The single most impactful I did was to get my almost-dad a dog. I wrote a story about how a pet dog (named Monte) helped Sy resume a purposeful life after my mother's death.

Sy (a 94-year-old man) and Monte (a 5-year-old mutt): A love story

Sy's care team grew over time to five people for 24x7 care. My almost-dad died peacefully at 96 years old in November 2020.

3. My Mother-In-Law

As my almost-dad's life was winding down, my then 89-year-old mother-in-law, Toni was starting to decline. She became a widow in 2017 and was living independently until 2019. However, she was lonely and started exhibiting memory and behavioral issues. I brought over two caregivers from Sy's team to provide part-time companionship.

We increased the team to three people with coverage from 11 AM — 11 PM when Toni started falling more frequently. I implored her to stay in bed until the morning caregiver arrived to avoid further falls. But she did not listen to me (she felt invincible) and never was in bed when the morning caretaker arrived. One morning, shortly before 11 AM, she fell in the kitchen and broke her ankle. Her left foot is currently in a cast.

The author's mother-in-law, courtesy of the author

Since Toni cannot be weight-bearing, she has become 100% wheelchair-bound. The bathrooms in her home cannot accommodate a wheelchair, so a portable commode is in use, and she is using a curved transport board to slide from the wheelchair to the commode (both the commode and the wheelchair have arms that lower).

The care team has expanded to six people for 24x7 coverage. I brought back two caregivers from earlier days, and I hired two new people found on care.com.

My care coordinator role is somewhat different since I am not the POW or the Medical POW; my husband, Ron, who has that authority, has a more significant role. However, I still spend time managing the team daily, responding to issues regarding her combative behavior and disgruntled attitude and overseeing care.

Twelve Lessons Learned from Three Iterations of Arranging Eldercare Spanning Eight Years

1. It takes a coordinated team to keep elderly loved ones at home. Build the team slowly, if possible. Add one person at a time to limit the number of unknowns.
2. Value every person on the team and let them know that you know what providing this care entails, that it's valued and essential work. Communicate often with each team member and with the team as a whole.
3. Maintain a care log where each team member adds to the daily notes to optimize intra-team communication. Notes should include blood pressure (and other recorded measurements), meals, behavior issues, etc. I set up the care logs online for remote access and to respond to any issues highlighted.
4. Let a team leader emerge who can help answer questions, provide training for new members and inform you privately of any performance issues.
5. If someone proves unreliable or not a team player or unsuited to the work, fire them immediately. It won't get better with warnings, so cut your losses.
6. Provide food for the caregivers so they can have meals during their shifts. This small perk keeps team members happy and connected with you and the family.
7. Don't rely heavily on any one person. Make the team as large as possible, so the impact won't be as profound if someone needs time off or quits altogether.
8. Pets are invaluable companions and provide the homebound elderly with unbridled love and renewed purpose. The care team can help with tasks such as walking a dog or adding pet food to the weekly shopping list.
9. The size of a bathroom matters a lot. I redesigned the bathroom in my mother's house to be handicap accessible. It made a massive difference in my mother and almost-dad's final days at home. My mother-in-law is not so lucky. If a bathroom remodeling project is feasible, it will be well worth executing.
10. Falling is a huge red flag that indicates more care is needed. For my mother, my almost-dad, and my mother-in-law, these falls have been unrecoverable events. If falls start, the care team hours should increase to mitigate the devastating effects of falling.
11. Apply for home hospice early and continuously. The admissions criteria are rigid, but the likelihood of acceptance is higher with the right program and your understanding of the entrance criteria. I had better luck with for-profit home hospice programs, with many to consider.
12. Having spent the last eight years managing eldercare, I know I don't want my children to take on this role. Spend the time, planning, and resources to ensure you do not leave your children in a position where they feel compelled to do this for you.