By Sara Beam, Caregiver and PUW Supporter/Volunteer
My Dad, now 83, was diagnosed with Parkinson’s in his mid-60s. He has remained remarkably active, both physically and socially, despite a steady worsening of symptoms over the years, which Deep Brain Stimulation (DBS) surgery a few years ago helped improve for a time. However, a major component of managing his disease well was the steadfast, strong support of my Mom as his caregiver. That changed dramatically when she was diagnosed unexpectedly with stage 4 terminal cancer in August of last year. We couldn’t replace her excellent care, but as her ability to help my Dad diminished, my brothers and I learned to work together from afar to care for the both of them.
While one of my brothers and I were able to make frequent visits to their home in North Carolina from Texas and New York, respectively, much had to be done remotely. Frequent phone calls were critical to help coordinate needed support and both their medical appointments. But, with my Mom’s memory damaged by her disease, and my Dad’s cognitive and memory issues exacerbated by the stress of the situation, more help was quickly needed. My brother from Massachusetts and his wife looked into care agencies in North Carolina and found a good one through online resources, which my parents reluctantly and sparingly began to use.
My Dad had never learned how to use email, another thing that my Mom took care of for him. But, we still needed to communicate with him quickly in written form to compensate for his memory issues. The initial solution was giving them a fax machine, so I could send reminders of doctors’ appointments, flight schedules for visits, etc. Later, we also started using remote computing, so that I could access my parents’ home computer from anywhere to print clear, large-print copies of documents for my Dad, whose eyesight had worsened significantly in the past year due to his Parkinson’s. We automated the few remaining monthly payments that my Mom hadn’t already done, so my Dad didn’t need to start writing checks on a regular basis. By setting up online access for their bank and credit cards, I was able to monitor their accounts from afar.
As my Mom’s condition worsened, we convinced my parents that they needed more help from professional caregivers. By the time my Mom passed, my Dad had gotten used to the caregivers and was willing to keep them in place for ten hours a day. But, it soon became apparent to him and us that living in the house without my mother’s care was too much for him, as he began to have more falls and his reliance on the professional caregivers grew. After much research by my brother and his wife, my Dad decided he would move to an assisted living facility in Massachusetts. In August, five months after my Mom’s passing, I drove him 850 miles to his new home, just a few minutes away from one of my brother’s home. He would now get to live near his only grandchildren. It’s rare that anyone skips their way happily in the door to assisted living and he’s still adjusting to life there, but he’s confident it was the right choice for him.
This guest post was written by Sara Beam, who has been a longstanding supporter of the Parkinson’s Unity Walk–especially as a volunteer on Walk Day.