How being a skilled queen bee prepared me for Parkinson’s caregiving
Thanks to my career, I already knew how to juggle multiple responsibilities
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The setting in Sedona, Arizona, was spectacular, with pink sandstone formations surrounding the guest house where my 40-something daughter, Lynn, and I were staying for six days in September 2024. We were there to participate in a spiritual growth retreat led by a therapist I admired.
On the first day, each of the 10 participants was asked to share her goal for our time together. Most mentioned things like reducing stress or learning to forgive. My goal? “I want to learn how not to hate my husband because he is sick.”
Immediately, Lynn began to cry as I told the group about my husband David’s 20 years with early-onset Parkinson’s disease. I did not cry. I spoke calmly, despite Lynn’s unexpected reaction and my concern for her. I was truly unaware of how much Dave’s illness affected her, even though she, a Pennsylvanian, lived far away from our Florida home and did not witness our daily routines and challenges.
Through the initial sharing, we established a sense of trust, and the process began to reveal more about ourselves and our challenges. We journaled, worked on arts-and-crafts projects to chart a timeline of significant life events, shared stories around a fire pit, and hiked to destinations renowned as vortexes of energy. I didn’t notice the special energy, but I did feel my spirit relax during the time away from my daily responsibilities. I remained open-hearted to the process underway. Lynn felt similarly.
A helpful insight
I was surprised by a simple writing exercise, in which we were asked these questions: “What is the strongest animal? Which of its qualities can I use in my life right now?” Naturally, I thought of elephants, yet that response did not speak to me. As sometimes happens when I have journaled in the past, my pen set off on its own path, somewhat detached from conscious thought, yet still my writing. What is the strongest animal? My answer: the queen bee.
When my turn came, I read aloud to the group what I had written. “She commands, and it is done. She is the CEO of the hives and all the worker bees. She churns out eggs nonstop and oversees the food production. She is alone but not lonely. She rocks! Be the queen bee. It’s OK to be in charge, alone, but not lonely this time.”
I knew down to my toes that this was the truth for me. It has been an invaluable insight. I had always called myself the queen bee in my work as a parish pastor. Pastors need to juggle multiple responsibilities at the same time. I was a preacher, teacher, worship leader, counselor, administrator, hospital visitor, sometime janitor, youth worker, singer, fundraiser, and meeting leader. I always strived to do all that with a cheerful heart. Lynn agreed with my self-assessment and was pleased with my new wisdom.
Undoubtedly, the ding-ding-ding bells rang in my head. I already knew how to be a queen bee!
I could be the queen bee with Dave as we manage life with Parkinson’s disease together. Since his diagnosis, I have taken on increasing responsibilities and more than once felt the crush of one more thing as his disease progressed.
I usually make all phone calls because he cannot speak loudly enough or think quickly enough to respond to callers on the other line. I am now the computer and tech person in our house, and have had to learn how to operate new technology (which is, at times, maddening). Dave did that previously because his career was in programming. We laugh at the irony when I teach him how to do something on his computer. As a passenger and supposed navigator, Dave cannot manage a smartphone map or use GPS in the car (also maddening when I am lost). I am the chauffeur, the chief cook, and the bottle washer. Dave does do laundry, good guy that he is.
Prior to this insight, I would have complained, usually in front of the bathroom mirror or out on a walk where I could cuss and sigh and shake my fist at fate. Every once in a while, a new challenge might trigger a full-out meltdown of sobbing, which I know is a necessary outlet for my spirit.
However, I am pleased to acknowledge that since my discernment that I am already a skilled queen bee, my complaining has lessened. I am more peaceful, able to live in the moment without projecting doom onto an unknown future. Instead, I say, “You are a queen bee. You are strong. You rock. You can handle this.” And I do. I regularly utter positive affirmations to myself, which feeds this queen bee the honey she needs.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
Christine Scheer
Hi Marjorie,
Wonderful column! Even though I am the person with Parkinson’s, I can relate to the queen bee as well. Daily affirmations definitely help! Thanks for your excellent story.
Christine
Marjorie Weiss
Thank you, Christine. You are right about he affirmations. It helps our brain's neurons be more aligned in the positive.
Debbie
Thank you for your story. It’s a great reminder of all we can do as most of us have been doing it for a long time in different aspects of our lives.
Marjorie Weiss
You are welcome. I am glad it spoke to you.
Northrup Jannette
Thank you for sharing although I was hoping for some great wisdom from the vortex, or not. How do you “not” hate your spouse or loved one who has an incurable disease. And although I’m not in your position, what about till death do us part?? I mean it could be you on the other end.
Marjorie Weiss
Challenging comment. I have to separate the Parky in Dave that I hate from the Dave in Dave. That is often difficult as the two mesh. As far as death do us part, of course, I honor my vows.
Nyap Foo
Hi Marjorie,
Thank you for your story and queen analogy. I can completely understand. I have been my wife’s full time carer for about 3 years now. We are in our 70s. Her PD condition had progressed very quickly. I had to learn very quickly to deal with the unexpected. Sometimes it can be very frustrating but I tried to think of the issues in her shoes. She had no control of what was happening to her body and mind. Keep posting please.
Kind regards, Nyap
Marjorie Weiss
I’m glad that it spoke to you. We do, as caregivers, have to take on responsibilities that were once shared. It can be daunting as you know. I am sorry to hear about her Parkinson’s progressing so rapidly. David sometimes says that Parkinson’s is gumming him to death because it’s moving so slowly.
Catherine Snow
Thank you! Your words encourage me to keep going. And I love the analogy of the queen bee.
Marjorie Weiss
I’m very glad to hear that it was encouraging. We certainly need that. Don’t we?
Janet cohren
I wish I had read this before he died in December - All he passed over to you was the same but you were a “we” and he never looked beyond the “he”
I thought I would die first I wanted to die first almost 2 months later I’m crying much less and have slowly started doing things I have to do for myself because he’s not telling me this asking for that it never stopped until he did - after 40 yrs my goal is to put myself first and that would be my advice to anyone but especially a caregiver because even killing yourself with almost no sleep, no peace, dizzy from the stress, horrible arthritis, a ten yr heart attack survivor, thank God for my friends on the telephone out of state - he had pt, nursing assistants he never did exercises unless they were here or I did them with him - the aids said he was strong in the shower and I knew he was physically strong but why not exercise - for 4 yrs I made pt appts not far from here, called cabs he’d stop for coffee and donuts - then he’d act like a dead body I said you don’t want to be in a wheel chair do you - he always said no - the doctors said that was essential with Parkinson’s - he got blood clots in his leg from laying in bed - he wanted to eat in bed was their a choice no - I can read one page now just once I’ve missed that - putting yourself first wasn’t how we were raised - I’d tell him to call Marty if anything happened to me and remember St Anthony’s Cemetary - he always said to write it down. I looked in his wallet last night and a small print ad of the Cemetary was in with all the papers he kept (the wallet looked like a piece of leather wrapped around an explosion of medical, supermarket, Medicare, social security, car repair, triple A, Master card, doctors appt cards and so many small papers with phone numbers- way too much for 2 wallets) I’m going to think like a librarian have everything in its place and organized, quiet enough to read until I’m tired courteous to whoever walks in but approachable only for questions I have logical answers for
Marjorie Weiss
My, Janet, you have been through it, haven't you? It is VERY frustrating when our husbands with Parkinsons don't want to help themselves. Infuriating, at times too because we know they will sink the ship with the spouse in it. Apathy and depression go with PD and that hinders a caregiver. Thanks for posting and may God bless you as you put YOU first. Live your best life and do all the things you had to put off.