Over the last seven weeks, I've shared with you the lessons I learned while walking the end of life journey with my parents. Most of the discussions have centered on forgiveness for those closest to you and youself. Today I am blogging about paid caregivers, the people who may spend more time with your parents at the end than even you. Next to money, the most frequently discussed issue surrounding my mother at the end was the paid staff caring for her.
When we started looking for someone to "help" with mom, our big concern was getting the car keys away from her. Mom lived in the suburbs and the car was a lifeline to her everyday needs. To her credit she had started to self limit her driving by staying close to home but she was also having little mishaps with the car on a regular bases when she went out. One time she got hung up on a ramp in a local parking lot and the police had to be called to help get her car free. We learned of these minor accidents in dribs and drabs well after they occurred. There wasn't enough family that lived close enough to drive her around and the idea of taking a taxi seemed extravagant to her so we decided to hire someone to do the driving for her.
The job description was simple. Drive mom to the grocery store and any other place she wanted to go a couple times a week. We were fortunate to find someone who was a nurse, a nutritionist and very friendly. From the beginning, my mom welcomed her and would even tell her friends that her children had "hired her a friend". Twice a week they would run mom's errand, have a ladies lunch out and then return home with leftovers for later. My mother didn't miss driving and truly enjoyed her weekly outings.
As the months progressed my mom's health and mind started to fail, she needed more help. We naturally increased the hours of Mom's Friend, which was a painless and seamless transition for mom and us but was life changing for her. As I relay this story to you, I can't tell you at what point the shift occurred but the paid caregiver began to make decisions and take actions that should have been made by the family.
The decisions made and the actions taken were not done out of malice because she genuinely cared for my mom and as such took full ownership of her care. The result was mom's end of life journey was taking a toll on her too. Instead of relieving our stress by being a rested outside resource, she became another exhausted, emotional person we had to negotiate with during a difficult time. Towards the end, we were hiring staff to relieve our heavy hearted and weary paid caregiver.
My message to you is threefold. First, a paid caregiver is called into solve a problem not replace family. We were so pleased that mom stopped driving without a struggle that we lost sight of the fact that Mom's Friend was not a friend but an employee. Keeping that distinction in place would have avoided a lot of discomfort for everyone later on in the journey. Next, if you are fortunate enough to find someone as conscientious as we did, remember that they are human beings. They need regular time off, sleep and meals. You need to make sure they are getting what they need even if they tell you "Oh, I'm fine" and resist taking time off. And third, remember, these are your parents. You know their values and their wishes. A paid caregiver's values and motivation may not be the same as the ones that ground your family. Keeping clear boundaries will help avoid confusion for all involved when end of life decisions are being made.
Mom's Friend was an angel. She genuinely cared for my mother and wanted to make the end of her life as joyful and as productive as possible. I am grateful for her care and attention to my mother. The challenge to all families is how to balance and effectively manage paid care with the real need to have a kind human being caring for your aging parents.