Embracing Realistic Optimism in the Mess of Parkinson’s Disease
Parkinson's disease takes a toll on patients, their families, and caregivers
While I have talked a lot in my columns about staying positive and looking for the good in all situations, I want to reflect on this. When you live with a loved one who has Parkinson’s disease (PD), there is never a break from the illness, for the patient, the immediate family, or the caregivers. From the moment we wake up in the morning, our lives revolve around PD until the sun sets each night. And it starts all over again every single day.
Our days begin with medications for my husband, Arman, the constant stress of impending falls, the painful stiffness of every muscle in his entire body, issues with speech, and the extreme fatigue and brain fog he cannot fight off. Even at night, I attempt sleep with one eye open in case he needs to get up during the night, waiting to help him at any moment. Staying 100% upbeat can be a challenge at times.
Of course, it is easy to say things like, “I don’t dwell on the negative” and “I always keep my head held high.” But realistically, a more sustainable mindset would be, “There are significant challenges in my daily life, and they are here to stay. However, I trust that I have all the resources and tools I need to cope.”
Staying grounded
Keeping the momentum going without an end in sight as a PD caregiver can be challenging. Especially when I start to think about the future of his PD and all of the unknown things that go with it. The quote, “Failure is not an option,” seems to apply here, as I know I will need to do whatever it takes to get through this. However, probably a better way to think of it would be, “The journey ahead may not be easy, and while I may make mistakes, I will learn all that I can along the way.”
I am genuinely an optimist in every sense of the word, and I have often thought that if I stay positive in every situation, all will be well. While a positive attitude is a must, it is also essential for me to keep perspective on the reality of our situation. I must continue to remind myself that my family is going through a lot, which takes a toll on us all. But I am confident that we are strong enough to get through this and come out the other side.
As a caregiver, I will continue to fight the PD battle with optimism, strength, courage, and hope. I will remain realistically optimistic, as I search for the bright side of everything.
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.
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Comments
jean mellano
Excellent column! You have articulated very well what a person with PD has to deal with on a daily basis; "... there is never a break from the illness, for the patient, the immediate family, or the caregivers. From the moment we wake up in the morning, our lives revolve around PD until the sun sets each night. And it starts all over again every single day." i have PD and I do not have a caregiver and since my Parkinson's honeymoon is over, I feel like I am experiencing 'groundhog day'. I find it so difficult to remain positive, especially since there is no break from the symptoms which serve as a constsnt reminder that I have an inurable, progressive disease. I wish you and your husband great strength.
Linda Keen
I find the unending posts on optimism so unrealistic. It is difficult…full stop. There is nothing positive about this situation as a caregiver, you are chained to PD and many people don’t have support that is constant. You care for your partner because of you commitment to him or her…to see our life through….
Richard Bolen
Realistic optimism is my new motto. I have issue with the Pollyanna vibe of PD support sites.
Mike
Jamie,
My wife and I like to walk daily. We are both getting older. We try and exercise as much as possible.
Fortunately I have only been diagnosed with Parkinson’s for 2 years. I have been attacking it ever since. But as you acknowledge it is not that easy. Staying positive is the very best approach. We look to Jesus for our strength. He has never let us down. I recently turned 66 and am looking for many more years. Writing on these websites helps me to feel connected. And keeps my brain functioning. Blessings, Mike
Jude
Personally, I will spend the rest of my days fighting the burden too many caregivers bear alone. The rosy stories are lovely but they are not what I have seen.
There is no down time because even if your PD partner should get some rest, you will not. That's when you go double time to make sure calendars are updated, supplies are in and stored, meds are current and accurately logged and then distributed in whatever med management tool might work (for now). And as said, every sound could mean another fall. Should you bandage it up yourself or does this one need a trip to the ER? As MCI advances you are never sure if what is reported is accurate- how much autonomy to allow for your partner and when to override their desires even though it sends the messages that more has been lost . It is utterly exhausting and the fear that your sleep deprived brain will make a mistake is never far from the mind. Not a believer in those happy tales.
Jennifer McLachlan
Thank you Jamie for your truly uplifting article. It is almost 10 years since I was diagnosed, aged 64. I have tried to keep a positive attitude. I have a very supportive husband and family. I also have a circle of friends who give me great encouragement. With all of their help, I am able to lead a fairly normal life most of the time. I do realise I have much to be thankful for compared with many others. I have a strong faith and have made it a habit to thank God for each day and also to find at least one thing to be thankful for.
Keep up the good work, Jamie, and I send you and your husband very best wishes.
TomHarrington
I consider myself forutunat to experience sublime moments with PD. life and death are adorned with psrkinsonian incidents.
jude
I'm all for the positive attitude but also for cautionary realism. The Caregivers Dilemma is a term not to be ignored. The more exhausted the caregiver becomes, the greater the danger to both her and her partner. The sleep deprivation referenced diminishes fhe capacities of the caregiver. When you can't sleep, because you are always on call, you are less alert and less effective. And if your health fails , then who will care for your partner?
The lack of caregiver resources is a national disgrace. Generally the caregiver is isolated by her partners disease and there simply are not enough helpers available to address the need.
You are responsible for serious medications and if you make a mistake the results can be dire. My every Sunday night routine was always to take out all the meds, all the inserts and go over each and everyone while creating the schedule for the week ahead.
I used to say to my husband's docs "I need to remind you that I did not got to medical school". You assess the symptoms everyday and wonder are the meds the best he could be getting/ are they making things worse? he is supposed to exercise but he can barely move- do I push harder or let the poor man sit. Is he declining in an alarming way or is this just the normal course of the disease?
It's too much for anyone person and I believe it puts all concerned at unnecessary risk. My focus from here on out is in exploring better systems to alleviate the exhaustion, the endless vigilance, the crushing amount of responsibility .
And this does not even address the dumping that happens in hospitals. An entirely different topic.
Todd Morrish
Hello, Jamie. Thank you for your contributions to the PD community! I have PD, and I am on the board of a local PD nonprofit called PD Active. Would you entertain speaking to our members in a Zoom webinar some time soon? Feel free to email me directly. Thanks for your consideration!
~Todd
Jamie Askari
Sure! I will email you directly!
Mike
Hi Jamie,
I find your articles refreshing and hopeful. We can not give up hope I can only speak from the perspective of a Person with Parkinson’s. It is tough but I have hope. They are making medical advances all the time. That you continue to work in a positive direction for you and your husband is not easy. That you maintain a positive perspective is essential. Blessings, Mike