April is Parkinson’s Awareness Month.
Parkinson’s disease is a chronic, degenerative neurological disorder that affects one in 100 people over age 60. Men have a somewhat higher risk than women. While the average age at onset is 60, some people are diagnosed at 40 or younger.
It’s a disorder of the central nervous system that results from the loss of cells in various parts of the brain, including the part that produces dopamine. Dopamine is responsible for transmitting signals within the brain that allow for coordination of movement. Loss of dopamine causes neurons to fire without normal control, leaving patients less able to direct or control their movement.
Lewy body dementia (LBD) is not as well-known as Alzheimer’s, but it is the second most common form of dementia. More than 1.3 million Americans are impacted by LBD, but little public attention is paid to this lesser-known disorder. The disease did get a boost in publicity when Robin Williams was diagnosed with LBD after his suicide, but far more public information is needed.
Lewy body dementia is a progressive neurodegenerative dementia closely associated with Parkinson’s disease. LBD is also a form of Parkinsonism, meaning that it includes some of the motor symptoms of Parkinson’s disease, too.
While most people with Parkinson’s do not also develop Lewy body dementia, studies suggest that having Parkinson’s increases your risk significantly. My dear husband, Richard had both. Richard died when he was 65. He was diagnosed with Parkinson’s on May 26, 2010, and he left the earth on March 26, 2017. That’s the average amount of time between diagnosis and death. 7 years. 7 short and very long years.
I’m an organizational development consultant and I specialize in partnering with business leaders to achieve transformational change. I’ve lead dozens of large scale change projects, most of them moving individuals, teams and organizations to a stronger and better place. I think of change as a positive thing and managing transformational change is my life’s calling.
But not all change is wanted, and not all change has a happy ending. My dear husband’s condition took over our lives. We fought a battle every day that we could not win. Richard’s ending wasn’t fast, and it wasn’t pretty. It was costly, time consuming and emotionally draining. No drug could save him and although there is hope for future generations inflicted with these diseases, it was too late for Richard. We made it the best it could be, but our efforts didn’t change the outcome. I managed the change that nobody wants.
There’s an irony to unwanted change happening to the change expert. And although my background provides helpful skills and experience, I was in uncharted waters. I learned every day, if I wanted to or not.
Here’s some of what I’ve learned. I hope its advice that you can use if you too are dealing with any change you don’t want and can’t avoid.
Cherish the beautiful moments and keep them in the forefront of your mind.
There are plenty of moments of pure hell and they will take over your consciousness if you don’t try hard to balance your thoughts.
For me it was the tender kiss that still took my breath away, the gentleness of Richard placing his hand on top of mine, and his beautiful blue eyes on the days they still twinkled. Or the way that Richard’s face lit up when one of his caregiver’s daughters sang him a song she learned in school that day and we all sang the ABC’s song together.
Find joy in the beauty of the world around you.
Take time to acknowledge when the sun is shining, the birds are singing, a hummingbird is outside the window, the leaves are turning or the neighborhood children are playing gleefully in the pool.
Be grateful for the big and small acts of kindness that others show you.
Be vulnerable enough to let people help in ways you would never ask for or even think of. Kindness comes from people you know and from complete strangers who jump to action when they see you need help.
Several years ago, a man at the Safeway came to our rescue when Richard was hallucinating (due to his Lewy-body dementia) and very afraid. He was running away from me calling for help and I couldn’t get him in our car. The man stopped pumping gas to tell Richard he would help. He told Richard that he was safe and offered him his water as I finally got Richard to take his anxiety medicine. His help allowed Richard to calm down enough that I could get him home. It was early in Richard’s diagnosis, and I didn’t have it down yet. I think of that kind man often and am still so grateful for his help.
Do the best that you can every day.
And know that there will be days when your best may not be very impressive. But it’s the best that you can do for that moment. And that’s all you can ask of yourself.
As they say on airplanes, ‘Put your own oxygen mask on before helping others.’
You cannot help others if you are burning out yourself. Take the time to go out with friends, take a walk, or whatever makes you happy or at least gives you a break.
Be kind to yourself.
You will make silly mistakes due to stress, and big mistakes because you didn’t know any better at the time. There are days that you will not find joy in anything and that is to be expected. But try not to beat yourself up.
Don’t be afraid of medical terms or doctors that tell you things you don’t understand.
It’s their job to explain things to you. Ask questions and paraphrase back to ensure understanding. Ask again and again until you feel comfortable understanding the information you need to manage your situation.
Talk about your predicament with forthright honesty.
This lets others talk about it too. Learn to talk about uncomfortable topics that you never thought you would.
Know that others are grieving too.
And they might say or do things that are not helpful to you. But please remember that they are trying to do what they think is best. If someone is not helping you at all with their attitude or advice, don’t hesitate to ask them to give you space.
Turn yourself into a project manager extraordinaire.
Being the primary caregiver means managing lots of moving parts. Be as organized as you can. If this is not your skill set or you are too stressed out or busy to manage the many aspects of your loved one’s life, ask someone you trust to do it for you. And don’t think that once things are set up that they don’t need constant oversight. Situations can get out of hand fast without attention.
For me, I managed a fabulous team of 24/7 caregivers, monitored the cleaning schedule I created, ensured Richard was eating a balanced diet, scheduled appointments, and purchased supplies and groceries. I also worked, and still made time to be with my husband. It was challenging, but I couldn’t have do all that without being a good project manager.
Do your best to accept your ‘new normal’.
There is no point in expecting your life to be like it was before disease struck your life or like the lives of others in your peer group. Your life is different and special now and do what you can to enjoy it. Focus on what you can do instead of what you can’t.
For us, international travel was a big part of our lives, and we can’t do that anymore. We can’t travel together outside our hometown of Tucson at all. But we can get in the car with a caregiver and take a trip to our local mountains for an hour.
A good day for Richard wasn’t anything like a good day for a normal healthy person. Using traditional standards to measure for a successful day is neither appropriate nor gratifying. Measure success by your own customized standards.
Help others like you find their way.
Take the time to share what you’ve learned with others facing the same challenges you faced. I’ve learned so much through my journey and have been able to help others who are not as far along in their journey as I am. In turn, they support me too.
Pray for the best and plan for the worst.
Of course, you want the best for your loved ones and yourself. Miracles do happen and I prayed for and even expected one. But I also needed to focus on more sobering things like financial planning scenarios and what to do when Richard needed a wheelchair.
I wasn’t the only one managing the change that nobody wants. There are millions of people just like me, with every imaginable background and story. I hope I can help others, just as so many others helped me and still do.
I welcome your reactions, comments and suggestions.
Ava S Butler is an organizational development consultant and leadership consultant based in Tucson Arizona. https://www.avasbutler.com/
She is the author of Parkinson’s: A Love Story with Dementia for Desserthttps://www.amazon.com/Parkinsons-Love-Story-Dementia-Dessert-ebook/dp/B07K4RLC2D/ref=sr_1_1?crid=1B0F2FR11OBGM&dib=eyJ2IjoiMSJ9.oWHjmZyxbt-8mqHhby8Op6OHpwls-tohqFv-Poz8nWU.8QNNX2F3-85Au8a264C_psaAM4u_drgQmRQcESmjz0w&dib_tag=se&keywords=parkinsons+a+love+story+with+dementia+for+dessert&nsdOptOutParam=true&qid=1769439424&sprefix=Parkinsons+A+Love+%2Caps%2C181&sr=8-1
and Mission Critical Meetings: 81 Practical Facilitation Techniques
You can reach me at ava@avasbutler.com or 520-404-9470