Last month was National Family Caregiver’s Month. A time to say thank you to all of our caregivers. Many of them are family, while others enter our lives as strangers but become a second family – one that will give us the gift of stepping away as caregivers and stepping back as who we are meant to be: spouses, mothers, fathers, daughters, and sons.
What happens when we find ourselves as caregivers while managing our own health challenges?
We put one foot in front of the other, do the best we can, and realize we will need help. This isn’t easy, but we are not alone. There are great resources, including The Davis Phinney Foundation and PMD Alliance. The newly created playlists are treasure troves of videos. Using the Care Partner Playlist, I found one of them, “Caregiving: Challenges, Choices & Lessons Learned.” It featured Dave Iverson – author, producer, journalist, Person with Parkinson’s, brother, and a son with a great story. I had the opportunity to discuss the video with him.
Dave comes across as a humble and grateful person. He is full of brilliant insights and anecdotes that he freely shares. Despite his PD diagnosis at 57, Dave didn’t hesitate when his 95-year-old mother’s dementia progressed and she needed him. He had watched his mother, Adelaide, take care of his father and brother, both of whom had Parkinson’s, and he would do the same for her. Dave moved back into his childhood home, and that story would later become a book, “Winter Stars”. One that will be on my Christmas List because I know I would have liked Adelaide.
As I watched the video, it was clear that Dave was an experienced journalist who had many “lessons to share.” He was an engaging speaker, and I was expecting to relate to him as a son with Parkinson’s and caregiver for his mom. However, there was more – I found myself drawn into Adelaide’s story.
At one point, Dave recalls a time when they abruptly left a dinner party. Adelaide went to her room. Later, she told him – she felt there were two Adelaides – the “good” Adelaide and the “bad” Adelaide. She wasn’t sure which one she was, but she thought it was the “bad” one.
Adelaide knew she was changing but didn’t like who she had become. As a wife and mom with Parkinson’s, I know how she felt. We all change, and it’s hard for our loved ones to watch, but it’s also hard for us to become someone we don’t like.
In an essay for Stanford Magazine ”Moving In With Mom,” Dave wrote that she was active in politics. As a volunteer, she called Democrats, saying, “Hello, my name is Adelaide Iverson. I am 96 years old, and I want you to vote!” The article shows a picture of her holding an autographed Stanford football. An avid fan, she attended games at 96, yelling “Tackle ’em! Get that guy!”
She touched the lives of many others, including two special ladies, Eileen and Sinai – Caretakers who became like family, and helped Dave to just be her son.
I gathered a few of my favorite nuggets of wisdom for all of us – wherever we are in life. We all have something to offer, so make life count – Adelaide did it for 105 years. Toward the end of her life, Dave recalls her saying, with eyes as bright as Winter Stars, “I feel lucky. Love is all around.”
Dave credits his mom for teaching him that Parkinson’s is a disease of subtraction and learning addition. Caregiving is a doorway to emotions, experiences, and learning who you are.
As a caregiver, you are not prepared for the anger, frustration, and fatigue. You want to be in charge of your life, not captured by circumstances. There is grief on both sides – for a life you won’t have and watching your loved one turn into someone they “hate.”
Be present for the person they are now. Look for hidden truths. No matter the circumstance, there is love on both sides.
Dave quoted former Facebook executive, Sheryl Sandberg, who told him when her husband died, “The best call I ever got was a friend who said,’ I am bringing you a cheeseburger – all you need to do is tell me ketchup or mayo.”
As a caregiver, you are taxed to your limits – you need support. Get help before you think you need it, especially if you are caring for a spouse. You cannot do as much as you think you can, and you shouldn’t do it either.
I encourage you to watch “Caregiving: Challenges, Choices & Lessons Learned, and check out the new video playlists. Watch with a friend and be sure to bring a cheeseburger!
Dave Iverson’s book “Winter Stars” shares his experience of caring for his mother for 10 years, including the challenges and rewards. Learn more about him and his work here.
