At some point in most of our lives, a loved one is going to need care. Yet being a caregiver is not something one typically thinks about or one that can be easily prepared for. It begins with a diagnosis- often a surprise – then leads into the initial shock, acknowledgement then acceptance of an unexpected disease someone you love now has. For my family, it was Parkinson’s Disease.
Some years ago, I clearly remember being at work and receiving a phone call from my husband who had just been to a neurology appointment. “I have Parkinson’s Disease” he said into the telephone and “the Doctor says it’s a progressive and debilitating disease. I remember verbalizing back the platitudes – “I’m here with you.” “We’ll beat this.” “We won’t let it get us down.” I should have gone with him, I thought. But who expected this? When I got off the phone, those two words kept coming back to me – progressive and debilitating. Boy, that didn’t sound good. The word “caregiver” did not yet surface.
So the years went on … yes, the disease progressed and yes, it became debilitating. Various doctors were seen and treatments tried. As my husband began to experience the impacts of his illness – so did I. I became a “somewhat” caregiver and eventually a total caregiver. Which I am presently, sharing the task with supportive workers who come into our home.
Life changed. He was no longer the fit, active, go-getter he was in his prime. We began to prepare for change – change in employment, change in housing, then eventually change in relationships along with impacts in traveling, socializing, and leaving our home.
One day a coworker and friend mentioned a support group she had just heard about for wives whose husbands had Parkinson’s. Sign me up – I remember thinking!! So I signed up, and went to a few meetings where I met unusually strong and vibrant women who were facing some serious challenges with their husbands’ illness of Parkinson’s.
As much as I enjoyed the courage, wit, and wisdom of these women – it was frightening. They talked about caregiving and medical supports I wasn’t ready to face. Much of this I wanted to avoid thinking about.
After attending the monthly support group meetings intermittently for about a year, I was hooked. These women were facing an adversity – Parkinson’s Disease- with their spouse, but they were not going to let it get them down (at least not all of the time).
As I went to meetings, I soaked in the advice and listened to personal stories that included successes and struggles. While my husband and I weren’t at the same stage yet, I began to realize this was a group I was supposed to be in. Which has led me to a favorite saying …
“Everything I know about dealing day-to-day with Parkinson’s Disease, I learned at my support group.” I learned how to laugh, how to cry, how to vent, and more ideas and strategies to put into place then one can imagine. Such as:
Come to group … you will always leave feeling better than you did coming in.
Listen … and you will learn something new.
Laugh … it sooths the soul and spirit.
Cry … if it’s a bad week or month. Everyone understands.
Do things for yourself to fight caregiver burnout.
Don’t give up on friends. You’ll need them again when you are no longer a caregiver.
Ask questions and advocate for your loved one.
Advocate for yourself too before you get run-down.
Call each other when needed.
Learn about equipment and safety supports from each other.
Go to a Parkinson’s conference together then out to lunch.
Remember to do thing you still enjoy – even if it’s without your spouse.
Forgive the friends and family that don’t understand your life.
If they will help- ask for help. If they won’t – move on.
Appreciate the places where you are understood – the group!!
Which led me to another saying about Parkinson’s wives which is – “Men with Parkinson’s know how to pick out their wives.” By this I mean that I saw dedication, strength, humor, resilience, and more traits in this group even though we came from different generations, backgrounds, home situations, and families.
We could recognize in each other the knowledge we wanted to gain, the questions that needed to be asked, the venting we might need to do, along with the stamina to keep coming back. They accepted me – right where I was – and supported my knowledge and strength gained by attending a caregiver support group.
Now it’s my turn to give back. Now I’m the “senior” member of the group meaning my spouse requires a high level of care. Sometimes I have to be careful when talking, so I don’t scare those newly diagnosed. But often they thank me for my candor because even if doesn’t apply today, they know it will someday. Newcomers remind me of me when I first came. I am glad to be able to share with others that while life changes when one is a caregiver. it can still be enjoyed. In a different way – a new normal - with the ups and downs all people face that include a extra caregiver challenges.
The last thing I gained in my journey of caregiving was hope. Not necessarily hope for a cure. But hope that there are ways to deal with this, to survive, and to go on. This blog was about Parkinson’s Disease but my journey applies to ant illness one faces that requires being a caregiver.
Watch for more to come …