Navigating “caregiver-partner” shift and advanced stages of Parkinson’s

Although my husband was diagnosed with early-onset Parkinson’s disease in 2009, it wasn’t until 2011 that I felt like an official caregiver. Around that time, he was accepted into a clinical trial evaluating a new Parkinson’s treatment. He needed surgery to place a PEG-J tube that would deliver his Parkinson’s medication directly into his intestines.

When we arrived home after the surgery, I felt overwhelmed and honestly scared. I was responsible for cleaning the incision, flushing the tube, and changing the dressing each day. I have a weak stomach when it comes to anything medical, so adjusting to this new routine was not easy.

Accepting my changing role

This experience thrust me headfirst into my new role, and there was no turning back. I was no longer just my husband’s wife — I was also his caregiver. After his diagnosis, I knew this day would come, but it was impossible to predict how this would play out in our lives.

Our marriage has been built on shared responsibilities, companionship, and love. After my husband’s diagnosis, these very foundations began to shift in ways neither of us anticipated. My husband, who once contributed equally to our daily life, has slowly become dependent on me for even the simplest tasks.

Fifteen years later, his Parkinson’s has progressed, and so has the level of care I provide. This includes assisting him with all of his daily activities. Being both his caregiver and his wife is now a 24/7 role.

Taking care of us

The transition from wife to wife and caregiver has evolved slowly. To avoid too many ongoing bumps in the road, we work hard to communicate our feelings, concerns, and issues. We also discuss the changes in our lives and relationships on an ongoing basis. Here are a few ideas that may help:

• Work together as a team: Parkinson’s disease will inevitably challenge relationships and marriage, so working as a team with your loved one can help both partners adapt to changes together.
• Consider professional counseling: Seeing a professional therapist who specializes in supporting patients and families affected by Parkinson’s can be helpful, as adding caregiving to a relationship or marriage can be complicated.
• Nurture your connection: Setting attainable goals and respecting each other’s feelings can help maintain a strong emotional connection.
• Establish boundaries: Talking about difficult topics and setting boundaries can help both partners navigate challenges more openly.

It may sound ironic, but I don’t know how I would have gotten through this without him. He is my backbone, my rock, and my best friend. And I like to think that I am his.

We are a great team and so in tune that sometimes a single glance tells us what the other is thinking. But to support our success, it’s vital that I take care of myself as well.

Taking care of me

Taking time for my well-being not only benefits me as an individual but also helps me remain a strong, effective caregiver. This balance helps me stay resilient and ready to face whatever challenges come our way. Taking care of me involves:

• Maintain my physical strength: Daily exercise classes are an excellent way to stay strong, and exercise also helps nurture my mental health.
• Write about my caregiving journey: Writing about my experiences for Parkinson’s News Today keeps my mind sharp and provides an outlet for my feelings. Documenting my experiences often feels like unloading a heavy weight from my mind as I type the words that describe my life.
• Join a support group: I attend a monthly virtual support group with amazing Parkinson’s spouses. I have met wonderful friends who have made the journey a little easier.

As the days and years pass, we continue to support each other emotionally, just as we have for over 30 years.

First and foremost, we are husband and wife. It’s imperative to maintain that relationship separate from my role as his caregiver. We are lucky because we enjoy simply spending time together. Somehow, we always find ways to laugh and have fun, even during hard times.

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.