Rosalynn Carter, Former First Lady and Founder of the Rosalynn Carter Institute for Caregiving, once said:
“There are only 4 kinds of people in this world: those who have been caregivers; those who currently are caregivers; those who will be caregivers; and those who will need caregivers.”
I think most people can agree that no one chooses to be a caregiver. It’s just one of those realities of life. It’s challenging, rewarding and everything in between. This is mine and my dad’s story.
Even though I haven’t lived in the same city as my dad since 1999, we have remained extremely close. We traveled the world together going to see soccer matches in Barcelona, Wimbledon matches in England and even Pearl Jam concerts in Hyde park.
It was back in 2009 that I started to notice he was changing. Things that always came easy to him were all of a sudden harder and he became increasingly slower each time I saw him. His memory loss was a big change, and for a man who played tennis for 2 hours a day, 3 days a week until he was 72, his tennis game was changing too.
It was clear to me that something was going on with him. Every time I saw him, I was shocked that no one else saw the changes that were so clear to me. But they were too close. My mom maybe didn’t see the changes, or she didn’t want to see the changes, but I knew something was wrong.
This was my first challenge. How do I get my mother, who is 11 years younger than my dad, to accept her new reality. Was she ready to become a caregiver? Did she even understand all that it entailed?
The next challenge I faced was housing. They lived in a 3 story house, the same house they had lived in for decades. As my dad began to slow down more and more, the home was now a danger to him. Worrying about him walking up and down the stairs kept me up at night and trying to convince my mother to leave the life she had grown accustomed to, and change her routine when it wasn’t her who needed the change, was extremely difficult. It took 3 years, but I finally convinced my parents to move into a condo and sell the house.
In 2011 my dad was diagnosed with Alzheimer’s and put on a medication called Aricept. Our experience with doctors and the Canadian healthcare system was terrible. His own doctors seemed disinterested in him, as if they were just going through the motions of a 9-5 job. This infuriated me more than anything. Aren’t doctors supposed to care about helping their patients?
It was around this time that I moved from Manhattan to Scottsdale, and in our new town my son made a friend at school whose dad happened to be a top neurosurgeon in the US. At an event for his hopital one night, I described to him my father’s symptoms, which included fogginess, shuffling his feet and a loss of bladder control. He looked me in my eyes and said “Your dad doesn’t have Alzheimer’s, I need to see him.”
The next phase in my caregiving journey centered around this unexpected great news. It turned out my dad had NPH, where excess spinal fluid puts pressure on the brain and leads to Alzheimer’s-like symptoms. The amazing news was that it was mostly reversible by simply putting a shunt in his head, a routine 30 minute procedure. While thrilled, I was even more upset that his other doctors never caught this. In fact, the MRI of his brain showed little to no atrophy of his brain. How could they say he had Alzheimers? Three precious years were lost forever.
Within hours of the shunt procedure, my father was a completely different person. He got out of his hospital bed and was walking around with ease. He was asking me about the stock market. It was amazing – it was as if the clock had just rewound 5 years. It wasn’t as if my dad was running marathons, or solving complicated problems but he was noticeably better, to the point where were able to continue our global travels together after the procedure.
In 2014, even with the improvements he had made, he still needed some help. This is when I started the financial caregiving part of my journey. We had been given a second chance to do things right and my dad asked me to take over his finances. As we went over all of his accounts, advisors, passwords and documents, I realized that my mom was completely in the dark about their finances too. And as I looked for a tool to help me pull all of his information together in one place where my mom and I could both access everything, I grew more frustrated.
The number of people in need of care in the United States is expected to reach 117 million by 2020, according to AARP. And a recent survey by Holiday Retirement shows 2 of every 5 adults between 40-60 years old have had to step up and help their aging parents manage their finances – and spend 2 hours each week doing it. With such a massive slice of the North American population affected, how could there be no solution to making financial caregiving easier?
So I decided to create Onist to help families and caregivers manage their loved ones’ finances with the important people in their lives. The Onist platform made it easy for my family to see everything my dad owned and owed in one place, to consolidate all of his important financial documents in one place, and to connect with his various professionals around his financial matters. Now my dad and I spend less time worrying about finances, and more time talking about tennis and other things he cares about. I’m immensely grateful for that.
Read more about how Onist came to be here.