How I wish I had prepared for advanced Parkinson’s
There’s no sugarcoating it: Advanced Parkinson’s disease is challenging for both the person diagnosed with the neurodegenerative disorder and the care partner, who also lives with its effects. There is nothing easy about it.
Eric, my husband, was diagnosed in 2014. He managed his stiffness, rigidity, and bradykinesia relatively well with medication and a walking stick until 2022, when his symptoms eventually progressed.
When things started to change
Eric worked nights at a printing company and struggled to get from the parking lot to his platemaking station. So, he started using a rollator for mobility and better navigation through the plant.
In May of that year, he had deep brain stimulation (DBS) surgery. This procedure increased his flexibility and strength and brought hope to his (our) Parkinson’s journey. He returned to work for almost a year.
But then, a complication with one of his medications increased his anxiety, and the pressures of the job, along with his advancing condition, led first to short-term disability and then long-term disability.
What we wish we had known
There are so many things Eric and I both wish we knew when we first learned of his Parkinson’s diagnosis.
For Eric, anger, frustration, and depression are part of his everyday life. “When you have to relinquish your daily responsibilities, it’s not fun,” Eric said. “The simple household tasks I used to do are no longer manageable. Losing your independence is not a good feeling.”
Over the past year, Eric voluntarily stopped driving. “I don’t trust my reflexes anymore. Now, I have to rely on Jill to drive me everywhere. I can’t do anything spontaneously anymore. Getting anywhere, whether it’s down the hall to the bedroom or going out somewhere, always takes more effort than I think I can give. Sometimes, I just want to run away from it,” Eric said.
I echo that sentiment. I wasn’t prepared for how much is involved in being a care partner. The physical, practical, emotional, spiritual, and financial strains of advanced Parkinson’s are sometimes overwhelming. I didn’t plan well for these changes because no one laid them out succinctly for us. We learn as we go through this tumultuous and vexing experience.
The reality of becoming a full-time care partner
I didn’t know I had assumed a 24-hour role, on top of my working life. Caregiving never takes a vacation, even when we do.
I should have been working out night and day for the past 30-plus years to prepare my body for the lifting, pulling, supporting, and weight transferring I do multiple times a day as I help Eric in and out of chairs, the bed, sometimes the floor, or a vehicle. I wish I knew how much brain power I would need to think for myself and, at times, for Eric, too.
How much time care really takes
Now, I plan our mornings around how long it takes me to get dressed and how much time I’ll spend helping Eric get ready, including hygiene and dressing.
I wish I could expand hours in our days to accommodate the time we spend going to and from doctors’ appointments and physical, speech, and occupational therapy sessions. Managing Eric’s medication regimen and juggling his on and off times requires efficient organization, planning, and patience. Everything must happen like clockwork.
The financial impact and more
We didn’t plan financially for the long-term healthcare and medical services we will need to support Eric’s care. We didn’t know that we’d have to take out loans to remodel two bathrooms to ensure his accessibility and safety.
And I didn’t know I’d be doing all the household chores — the mundane things like changing light bulbs in high fixtures, tightening faucets, climbing under the sink to reengage the garbage disposal, doing laundry, all the cooking, maintaining the lawn, and bringing in all the groceries by myself.
What I hope others can learn from my experience
I have learned my love is deep, but my patience is always way too shallow, and my temper is on a short fuse. My fellow care partners express similar reactions. I’m glad I’m not alone.
Practice self-care
If you’re a Parkinson’s care partner, call on all the love and strength you can muster for the long haul. Plan self-care. I learned that it’s extremely hard to do, but critical to my own well-being. Meditation, walks, short moments of me time, venting with other care partners, and my sister help me.
Oh, and spa therapy does wonders for my outlook. If only I could afford weekly or at least monthly massages!
Become a Parkinson’s advocate
Become your partner’s biggest advocate. I advocate for Eric to receive the best care, the right medicines and therapies, mobility resources, respect, and awareness of his and others’ disabilities, visible or not.
If your partner is ever hospitalized, take all their medications with you. The hospital staff may not deliver the medications precisely. Many times, they don’t have the right medicines or the correct dosages required for the personalized care Parkinson’s requires. Don’t back down.
Join local groups and programs
If you have Parkinson’s, consider joining a Rock Steady Boxing for Parkinson’s local program. This non-contact boxing and exercise program is a crucial lifeline for Eric’s quality of life, exercise, balance, strength, agility, and overall fitness.
Boxers encourage one another, and it’s also a tremendous support network for care partners. Every day, I find strength, support, and love from my fellow care partners. We laugh, cry, share one another’s burdens, offer shoulders to lean on and hugs that restore us, and encourage resilience.
Ask for help
Pay for the lawn service, as we now do. Enlist handy friends or gracious church members to help with household maintenance, as I’ve finally done. Whether you have Parkinson’s or you’re a care partner, don’t be afraid to ask for help and accept assistance when offered.
Give people with Parkinson’s, care partners, and each other grace. Keep your humor. Enjoy music. Play games. Go to concerts, sporting events, and travel, even if it’s hard.
Looking forward
Never navigate Parkinson’s alone. Accept that Parkinson’s is an unrelenting robber for you, your partner, family, and friends. It may cause excessive profanity. Choosing to live, seeking joy, finding community, and expressing love and gratitude help.
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 other 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.
