Each year 60,000 Americans are diagnosed with the second most common neurodegenerative disease after Alzheimer’s – Parkinson’s disease. Parkinson’s has no cure, and the symptoms can be debilitating. Not surprisingly, the more than one million patients who are living with it often rely heavily on the help of a family caregiver.
Caregiving for anyone can be difficult but caring for someone with Parkinson’s can be especially challenging. The disease often comes with a wide range of symptoms that can change and progress as time goes on. Everyone experiences Parkinson’s differently, which makes it even more important to have support from others in the same situation. As Parkinson’s sufferer and advocate Michael J. Fox put it: “We may each have our own individual Parkinson’s, but we all share one thing in common. Hope.”
In this article, we’ll share stories from family caregivers who have been through the experience of caring for a loved one with Parkinson’s, as well as their strategies and advice to get through it.
A caregiver’s story: Living and loving through the slow process of dying
Harry Deitz’s wife was diagnosed with Parkinson’s at the age of 57, younger than the average age of onset. But the health challenges didn’t stop there. She was then diagnosed with Lewy Body Dementia and then later, breast cancer. In this article, he talks about their journey and the effects and emotions he experienced as a caregiver, including isolation, lack of sleep, and general overwhelm.
His strategy/advice: “I hired a live-in aide through an agency because I had heard stories about people hiring in-home help privately and having security problems. Over the course of 17 months, we had nine different aides, the longest for 34 weeks. I was concerned about bringing a stranger into our home, but we were fortunate because we didn’t have a bad experience with any of them, and the first and last ones, who were with us the longest, were especially patient and compassionate and blended in well with our family.”
Check out the full post here.
Singing in the Rain — Caring for My Family Members with Parkinson’s Disease Psychosis
In this post, an anonymous writer shares her experience coping with a specific symptom of Parkinson’s disease – psychosis. Her mother, her father, and her sister all developed Parkinson’s and she cared for all of them through delusions and hallucinations, which are non-motor symptoms that people don’t typically associate with Parkinson’s.
Her strategy/advice: “My advice to other families is to learn more about non-motor control symptoms and to talk to a doctor. Families might also visit the National Parkinson’s Foundation to watch a video on PD psychosis or The Michael J. Fox Foundation for Parkinson’s Research to watch a recent webinar. Reach out for support and know you’re not alone.”
Read more in the full post.
A caregiver’s journey from rage to healing
Jaqueline Grossman Massing had been caregiving since the young age of 12, when her parents sent her and her younger sisters to the US to escape the Nazis during World War 2. It was in the U.S. that she met her husband Alan, who was diagnosed with Parkinson’s in the early 90’s after losing his sense of smell and experiencing a limp arm. As his disease has progressed, Jaqueline has had to find ways to cope with stress as well as come to terms with her own past.
Her strategy/advice: Massing deals with caregiver stress by sculpting and writing. She also started a gym near their home for people with Parkinson’s, where she also holds support groups sessions. She loves seeing how people with Parkinson’s can flourish with the right care and support. “When I see people improve, I feel very good about it. It addresses some of the anger I felt at what I was given and what my husband had to endure,” she says. “That’s my reward.”
Read her amazing story here.
And then life took a different turn
This author’s husband broke the news of his Parkinson’s diagnosis to her after selecting the film “Love and Other Drugs” (about a young woman diagnosed with early-onset Parkinson’s) for movie night. In her post, she talks about the difficulty differentiating between symptoms and side effects of medications and coming to terms with the fact that their retirement would not be what they planned.
Her strategy/advice: “PD patients often dislike the help being offered to them and definitely don’t like asking for it, leading to previously non-existent clashes between us. He felt controlled and dictated to. I felt undervalued and misunderstood. Feelings which grew until I realized that I needed to take care of myself, urgently. I needed an outlet. He was very supportive when I joined a gym and a local choir, both giving me the much-needed space during the day. I reconnected with old friends and started paying more attention to developing my quilting business. I got there in time.”
Learn more from these caregivers by accessing the article here.
When Your Partner is Diagnosed with Parkinson’s: A Caregiver’s Story
It’s not often you hear of a couple getting married after a Parkinson’s diagnosis, but that’s how Angela Robb’s caregiving journey began. Her husband Karl was diagnosed with early-onset Parkinson’s disease at the age of 23 in 1991. In this interview, she talks about the tools and resources she used, how she took care of herself, and the challenges and emotions she went through as a caregiver.
Her strategy/advice: “You can live a full and rewarding life as a care partner/caregiver! I’ve found these 3 approaches have always helped me. I hope they can help you too:
- Flexibility – Always have an alternative plan in your pocket. Rigidity causes stress which makes everything worse! The more flexible you are, the less stress you will have.
- Always be asking questions – Asking questions is the only way you can be a good advocate for yourself and your loved one! As a care partner/caregiver, you are an integral part of your loved one’s health team.
- Being Mindful – Mindfulness is a way for all of us to listen to ourselves. We get so used to serving others we forget to serve ourselves. By listening within, even for a few minutes a day, we can strengthen our mind, body and spirit!”
Read the interview in its entirety in the full post.
There are many others who are going through the process of caregiving for a loved one with Parkinson’s, and there are resources available if you are willing to seek them out. The Family Caregiver Alliance shares some additional advice:
“Get help—don’t try to do it all alone. By getting help, a caregiver can lessen their sense of isolation, and it gives you more confidence in your own caregiving ability. Having help increases your ability to think creatively and helps you get those needed breaks. Help is available through local and community services. These include neighbors, friends, churches, synagogues, senior centers, adult day health, Meals on Wheels, and door-to-door vans. For a fee there is in-home care for help with cooking, bathing, dressing, and meal preparation.”
If you’d like to learn more about how we can support you in your family caregiving role, please reach out for a complimentary discovery call with a client service specialist to learn more about our Parkinson’s Specialty Program. We are here to help!