Living with fear is part of being a Parkinson’s caregiver
I constantly worry about the risks my husband faces
“Fear does not stop death. It stops life.” — Vi Keeland
My husband, Arman, and I enjoy babysitting our great-nephew, who is 1 year old. We used to babysit his dad, so it’s an extra-special kind of full-circle joy for us.
The sight of our great-nephew’s gummy smile, with small white teeth making their way in, fills us with unimaginable joy. We watch with awe and amazement as he unsteadily toddles around our house. Since our home is not baby-proofed, we must watch him like hawks to ensure he doesn’t get near anything dangerous, like the stairs. At that age, babies have no fear and require the full attention of their caregivers to ensure their safety.
I cannot imagine living without a cloud of uneasiness constantly enveloping me. While I’ve written in previous columns about worry, lately, that emotion has evolved into something stronger: fear.
Fear of what will happen today. Fear of all the unknowns. Fear about the progression of Arman’s Parkinson’s disease. Fear of how we will handle it. My jaw is constantly clenched tightly.
Navigating constant stress and worry
Because I’m a caregiver to Arman, who was diagnosed with early-onset Parkinson’s disease in 2009, my world revolves around protecting him and keeping him safe — similar to babysitting our great-nephew.
As much as I would love to live carefree, I no longer have that option. These days, I’m on edge every waking moment, almost as if I’m waiting for a metaphorical ball to drop.
Arman is retired, and I work two jobs remotely, so we’re together practically 24/7. I feel a lot more comfortable when we’re in the safety of our home. But when we’re not home, a feeling of dread often washes over me.
From the moment we enter the garage, I’m concerned that he’ll hit his head while getting into the car. The leads of his deep-brain stimulator protrude from his skull like tiny horns, and I worry that he’ll bump them while awkwardly maneuvering his body into the car.
I have the same worry when he gets out of the car. And then there’s the stress of navigating a parking lot full of drivers who aren’t looking out for an unsteady man with Parkinson’s disease.
If we’re headed to our favorite grocery store, I feel a little better knowing he has some extra stability from pushing the cart. Many of the workers at this small store are familiar with us, so we both feel more at ease there. It is much easier to be in a familiar place.
After we arrive home from our outing and remove his shoes and coat, I quickly escort him to the safety of his recliner. I put the TV remote, his water bottle, and his phone on the side table, and he is good to go while I unload groceries and breathe a sigh of relief. The overwhelming feeling of impending doom slowly dissipates as we settle back into a place that’s safe and sound.
Focusing on what I can control
Circling back to the quote at the start of this column, I ponder how to control my fears and not allow them to steal the joy out of living. I am not a fearful person by nature. I never worry about locking the doors to our house, and I’ve never seen the need for a home alarm system.
I don’t want anxiety to control my life, nor do I want it to ruin Arman’s. I don’t want to live in fear, constantly waiting for the next Parkinson’s-related retropulsion to cause a potentially dangerous fall. Still, it feels nearly impossible to go back to being carefree — like a baby crawling toward the stairs without a care in the world.
I am working to acknowledge that worry and fear are an inevitable part of life with Parkinson’s, especially because falls are one of the major causes of trips to the emergency room and hospitalizations for people with the disease.
Accidents will happen, regardless of how much I worry, and Parkinson’s will progress, no matter how much I fear it. These are things that I cannot control. The key is to shift my focus and energy to what I can control: my attitude, my happiness, and my response to everything that comes my way.
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.
About the Author
Terri Pease
Jamie, I wonder if it's possible to swap out fear for caution. We caregivers do have to be aware and attentive, but fear seems to me to be so debilitating. What do you think?
Terri Pease, Ph.D.
author
Love, Dignity and Parkinson's: from Care Partner to Caregiver
Jamie Askari
Hi Terri,
Thanks for the advice, it's definitely worth a try! I appreciate you reading :)
Best,
Jamie
matthew wilmer
I too worry about most of the same things that you talked about . I am a caregiver for my wife I'm 83 yrs old my wife is 84. I worry as to how long i will be able to continue to take care of my wife because I to is getting old . I worry about how long before parkinson really take over her complete body. Right now she can move but she fall a lot and when she freeze she completely just drops right down to the floor . I also have a hard time keeping her meds on a good schedule which is important . I can only pray to God to help me through these times. Parkinson is no joke each day is a different day.
Jamie Askari
Hi Mathew,
The worry for the future is one of the hardest parts of PD. I think the best thing is to take life moment to moment, and try not to think too far in advance, it's simply too overwhelming. Sending prayers for you and your wife.
Best,
Jamie
Steve Lazarus
Thanks for sharing your thoughts Jamie. Sorry to hear of life on the edge. I am experiencing a different experience as a caregiver. My Partner has been on a roller coaster where every time she woke up, I had to wake up and help her out of the bed and walk her to the bathroom. The cold weather also debilitates her a good bit. However, two months ago she went on the Onapago pump and she now can get out of the bed quicker than I can many times. She has been one of the main uses of ChatGPT as her artistic senses are an overdrive in writing a book on our dog. We all know that each individual with Parkinson’s is so different, which can either be taken as a blessing or curse. My faith has been such a deep part of my approach to this, and I have actually been very excited to be learning about all the new technologies and research that’s going on in the field. But there is no doubt that we have caretakers will always think ahead, but I try to stay in the present and enjoy what we have at this time. I wish you both continued well-being and hopefully less stressful times ahead.
God bless, Steve
Jamie Askari
Hi Steve,
I am glad to hear that she has seen some improvement with the pump. How fantastic that she is writing a book; that's a great distraction from PD. Thank you for your kind words and wishes.
Best,
Jamie
Deidre
This has been of some comfort to me as I had been assessing my fears and stress as some personal failing on my part. I was my husband’s sole caregiver, until recently when I fell down the stairs and fractured both ankles. Our two energetic chihuahuas had to go and stay with a friend for three weeks. Getting them back I am being barely able to manage them in a wheelchair, that a home care aide must help me into. My husband has been whisked off to the ER twice in as many weeks with PD related issues. It has been so stressful that we have made the difficult decision to allow them to be adopted-together to a new home. Together we will move forward and face what comes next. And I will try to blame myself less.
Jamie Askari
Hi Deidre,
Wow, sounds like you both have been through a lot lately. I'm sending prayers for recovery. I am sorry about your dogs; that must have been a difficult decision to make. You do not need to blame yourself; you have been through a lot and deserve grace from yourself. Sending hugs your way, and thanks for reading.
Best,
Jamie
Roger Trupin
I am sure your husband lives in fear also. It's unlikely he will die from Parkinson's. More likely he will die from a fall which is a risk many older people have with or without Parkinson's.ave him. if you want to reduce that risk he should use a walker He should also sign up for an exercise program to improve his strength. Exercise is a lot more effective. in slowing the progression of the disease than some of thee medicines out there.If your husband would take some responsibility for his well being you might live with less fear din .. I am tired of reading these negative articles about Parkinson's.. Parkinsons is not a death sentence.
Jamie Askari
Hi Roger,
Thank you for the suggestions. He is very proactive with his daily exercise, PT, and does use a rotator for assistance. He takes full responsibility for his health and his PD, especially since he is a cardiologist. I am sorry that you feel that this is a negative column; it's simply my experience and not meant to be negative. You may want to take a look at some of my other columns about positivity; you might enjoy them.
Debbie Hanson
Thank you for the reminder to "shift my focus and energy to what I can control." I needed that today. What a gift you have in writing.
Jamie Askari
Hi Debbie,
Thank you for the kind words, it made my day!! I think we all need that reminder each and every day. Appreciate you reading :)
Best,
Jamie
William Palmer
Thank you, Jaime. This column is amazing to me. You are a wonderful, loving caregiver; I see why you feel fear. Although my PD is less complex than Arman's, my wife is not as caring--and sometimes when I get so exhausted from mowing part of the lawn or even doing the dishes, she makes fun of me when I make sounds of exhaustion. She never did this before my PD. Recently I stuttered and she mocked that. I think my PD is hard on her, but she doesn't want to see a therapist. I see now how complicated and diverse caregiving is. I'm trying to figure out ways to care for my wife as she's having trouble caring for and dealing with me.
Jamie Askari
HI William,
Thanks for the kind words. I am sorry to hear that you and your wife are struggling. I am hopeful that, over time, she will adjust to the role of care partner. In the meantime keep your head up, and thanks for reading!
Best,
Jamie
Dawn May
For my husband - he is not alone
Jamie Askari
Thanks for reading, Dawn!
Best,
Jamie
Michaelene
I completely understand her. It is very difficult. I take my husband out to dinner with the help of his rollator. We manage but my heart breaks for the unknown. We laugh and are grateful for good days and we try to forget about the bad ones. We always say we are happy we have each other. We are happy to return home to where we feel safe. I always worry when will the next stage start. I pray we have each other for a long time.
Jamie Askari
Hi Michaelene,
Thank you for your comments; I am glad that my column resonated with you. It sounds like we have a similar mindset! Appreciate you reading.
Best,
Jamie