We’re continuing our Summer Sampler series, revisiting some of our favorite posts from past years. This article was originally published in January of 2016. Enjoy! And please feel free to forward to a friend.
by Cynthia Fantasia
My name is Cynthia Fantasia and I am a caregiver. In my other life I served as Pastor of Women and Service at Grace Chapel. I was used to caring for people. In April 2013 I felt God prompting me to think about a May 2014 retirement. I was looking forward to a new chapter, some travel, time with our grandkids, and of course, time with Bob. Life was good, and the future looked bright.
As 2013 drew to a close I began to notice some vague changes with Bob. We met with a specialist – and life hasn’t been the same since. Alzheimer’s Disease became an unwelcome guest in our lives and its presence grows with each passing day. The demands of a very active ministry soon became more draining than energizing, and having my physical body in one place while my mind and heart were in another was exhausting. The day arrived, and I exited the office and my very exciting professional life to begin my new career as a full-time caregiver.
THE THINGS I MISS:
I miss our rich conversations. We could talk for hours challenging each other to think “outside the box.” We could solve any, and every, one of the world’s problems. I admired Bob’s wisdom, his insights, and his ability to get to the heart of the matter – all matters. Conversations today center around the weather, what we’ll have for lunch or dinner, the weather, and his lifetime memories – most “rewritten.”
I miss my winsome life. My career took me to various places in our country, Europe, Russia weeks after the fall of the Soviet Union, and Africa. If there was an opportunity to “go,” I did, with Bob’s full support and encouragement.
I miss our shared history. We have been married for 47 years, have three children and five “perfect” grandchildren – yet Bob often asks me how we met, are we married, and why are we living where we live. The memories we shared are now my memories to treasure.
THE THINGS I NEED:
I have pretty much been a full-time caregiver for about two years and I have become very aware of the things I (and most caregivers) need.
Give me a safe place to talk – What do I need? I need people who will let me talk. If I am having a bad day, if I am worried about finances, if I am frustrated – just listen. I am not looking for solutions or quick fixes because there really aren’t any.
I need alone time. While I really love people, don’t just come to visit with US, plan something with Bob: Glen plans an adventure with Bob once a month – (they’ve been to some historic houses, to some funky breakfast spots, to a walk by a river); Bill takes Bob out for lunch every other Wednesday, and a cadre of “girlfriends” walk with Bob once or twice a week. “Team Bob” – they are oxygen to my soul!
Caregiving is a stressful and complicated season of life. Yet as complicated as the season is, what I, what all caregivers, need is really quite simple: a safe place to talk and alone time.
THE THINGS I HAVE LEARNED:
It takes a village to help a caregiver. Caregiving is not for the faint of heart and this is not the time to be proud! The hardest lesson of all has been learning to ask for help. I still haven’t conquered that but I am trying!!
“I don’t live in Kansas anymore.” Everything in my life has changed and if I am going to survive I need to roll with the changes. While we are people of faith, I know that our earthly story isn’t going to have a happy ending. And I am coming to grips with that.
“A soft answer turns away wrath.” It does no good to argue with Bob, and a soft answer does indeed change the course of the “conversation.”
Love isn’t what you get, it’s what you give.
I am NOT alone. There are a few women who have become dear friends. We have been drawn together through the unlikely circumstances that have placed us on the same journey. We “get” each other!! One special friend sent me Fernando Ortega’s “Take Heart, My Friend.” The song touched my heart – she and I are traveling partners! Some are women who have been on this journey and on whose shoulders I now stand. And I know there will be women who will come behind me/us who will need us to light the way for them.
God is faithful. His presence is with me and will continue to accompany me on this journey. He has proven over and over that “He will never leave me or forsake me,” that “The Lord is my Shepherd,” and as unlikely as it sounds, He came to give me life, “life to the full.”
Are there days that are difficult? Absolutely! Are there days that I want to just “pack it all up?” Absolutely! Would I have chosen this path for my life? Absolutely not! But would I have passed up the lessons I am learning, the love and help from family and friends, and the deep growth in me? Absolutely not!
A doctor friend wrote in his blog recently something that speaks to my heart’s desire:
“There’s a period of time between a… diagnosis and the moment when a life ends, and that entire period of time contains life. Sometimes this time is months, sometimes it’s years, sometimes it’s weeks. Far too often we get so distracted by the perceived inevitability of death that the life contained therein passes by, and sometimes we forget to live it.” (www.kenbishop.me)
I choose to savor and celebrate the life that we have together, to do this season well (as far as it depends on me), and to trust the One Who continues to lead and strengthen me.
Cynthia Fantasia served for 25 years as Pastor of Women at Grace Chapel, Lexington, MA. She is currently a member of the board of elders at Grace Chapel and speaks at conferences and retreats nationally and internationally. A contributing author in Mothers Have Angel Wings by Carol Kent and 30 Ways to Embrace Life by Lucinda McDowell, Cynthia has also written several Bible studies that are used across the country.
Her new book, In the Lingering Light: Courage and Hope for the Alzheimers Caregiver, was published this past week! Her book chronicles her husband’s (and her) journey through Alzheimer’s disease. Bob died in October of 2016. Cynthia is available to speak on this topic and would love to share her experiences in order to help others (and others includes everyone because statistics show that everyone will be affected by this disease).
Cynthia has three adult children and five “perfect” grandchildren. Her favorite activities are long walks, reading great books, visiting her beloved Maine coast, and seeing the world through the eyes of her grandchildren.You can find her online at https://www.cynthiafantasia.com/.