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 has Parkinson’s disease and Lewy-body dementia. Its taken over our lives. We fight a battle every day that we will not win. Richard’s ending won’t be fast and it won’t be pretty. It’s costly, time consuming and emotionally draining. No drug will save him and although there is hope for future generations inflicted with these diseases, it’s too late for Richard. We make it the best it can be, but our efforts won’t change the outcome. I’m managing 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’m in uncharted waters. I’m learning every day, if I want to or not. And I’ve got a lot more learning to go as we move forward towards our inevitable fate.
Here’s some of what I’ve learned so far. I hope its advice that you can use if you too are dealing with a 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’s the tender kiss that still takes my breath away, the gentleness of Richard placing his hand on top of mine, and his beautiful blue eyes on the days they still twinkle. 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 also from complete strangers who jump to action when they see you need help.
A few 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. In the event that 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 manage a fabulous team of 24/7 caregivers, monitor the cleaning schedule I created, ensure Richard is eating a balanced diet, schedule appointments, and purchase supplies and groceries. I also work and make time to be with my husband. I couldn’t 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 home town 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 isn’t anything like a good day for a normal healthy person. Using traditional standards to measure for a successful day is neither appropriate or 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 face. 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 pray for and even expect one. But I also must focus on more sobering things like financial planning scenarios and what to do when Richard needs a wheelchair.
I’m not 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 are helping me.
I welcome your reactions, comments and suggestions.
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