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Care Partner Experiences

Informal & Family Caregivers

Just as Parkinson’s disease symptoms and progression can vary from individual to individual, so too does the situation and circumstances for providing care as the disease progresses. For many people with Parkinson’s, that care is provided in whole or part by members of the immediate or extended family. In fact, nearly 1 in 5 Oregonians are providing unpaid care to a vulnerable or disabled person. (AARP, 2020)

Please keep reading some of the stories and narratives we’ve gathered from members of the PRO community. 

In addition to the support groups, respite fund,education programs, counseling and support offered via PRO, here are some additional resources for family caregivers

Patricia Roe, Vancouver

At some point in our lives, many of us will have the responsibility of caring for a family member. With little or no training, we take this on willingly out of a sense of love, loyalty or perhaps duty. I have been in the role more than once and find that it has changed me in ways that I believe are for the better. I found patience I never thought I had, learned healthy ways to grieve, and discovered the value of living fully each and every day. It’s not an easy job, yet it can be very rewarding. My journey in caring began with my father, or really my parents.

Read Patricia’s full account: From Giving Care as a Daughter to Partnering in Care as a Wife,  Two Stories of Parkinson’s Disease

Who would have thought that I would one day find myself facing the challenge of PD again from an even closer perspective? It has been twelve years since my husband was diagnosed. He had been referred to a neurologist for what his primary care doctor thought was Essential Tremor. Not realizing what was about to happen, I didn’t accompany him to the appointment. My heart broke when he called to tell me, “The doctor says that I have Parkinson’s Disease. I know you didn’t sign up for this so if you want to leave, I would understand.” In that moment I accepted that this was our shared journey

Caryn Lee, Bend

There are times throughout any given day when things are going well. And there are times when your “good” day starts to get a little crazy. And then you hit a wall.

As a person with a sharp tone and the facial expression to back it up I’ve had to ask myself “what should I do next?” when the craziness persists.  Mind you, I didn’t ask myself what do I “want” to do next.  No, I’ve learned to quiet my tone and distract myself just long enough to soften my face before I respond both verbally and non-verbally.

I will say there are times when I tell myself to step out of myself and look at my loved one (minus the sigh.) When I can’t seem to get it together, I literally treat myself like we did with our two year old – really, I do that to myself – in the form of distraction to buy myself some time before I snap.

I’ve learned to compartmentalize my reactions and my responses. I’ve learned there is no way to power through frustration anger or disappointment. There is no way to make some things make sense. So, I pull way back and break my emotions -frustration, anger or disappointment into small priorities. I try to remember that when I’m really emotionally upset it is hard to be kind, tolerant and patient.  We are in this together, year after year. It’s exhausting, frustration and disappointing. It it is love.  It’s just a little different than how we use to be.  And so it goes.

Jane Manchee, Portland

“Hon, it’s time to go, have your got everything?” “Yes.” “Have you got your phone?” “Yes.” Have you got your eyeglasses?” “Yes.” “Notebook?” “Yes.” “Got your meds? Okay, let’s go.” We climb in the car, get settled and head off to our appointment. Rounding the corner from home. “Oh, wait.” “What is it?” “I forgot my wallet.” I laugh. “The one thing I forgot to ask you.”

Crud, I think to myself and we spin around to get it. As I run into the house the I can’t do this, I can barely keep track of myself monologue rears its ugly head. It chatters for a moment like a hamster on a wheel and then I push it away because I know there’s no point going there.

We’re still searching for the right balance when it comes to keeping track of everything. Joe recognizes that when he gets distracted he loses sight of what he might have been working on. Consequently, dishes are left half done, damp towels are left on the bed, fridge doors remain partially open, items are misplaced – you get my drift.

Leaving reminder notes in obvious places doesn’t seem to help – he either doesn’t see them or possibly he ignores them – I’m not sure which.

Sometimes it’s hard not to attirbute misplacing something to the aging process. We all do it, we all forget things, so I’m not sure how much is Parkisnon’s related and how much is inevitable. It can be frustrating for both of us. I feel like I’m constantly picking up after him, and he gets annoyed when he misplaces things. 

The one thing we haven’t lost is our sense of humor. It’s what gets us through our days. To borrow the title of Richard Carlson’s book, we don’t sweat the small stuff.

Well, sometimes I do, but if we step back, take a deep breath, and survey the situation, there is usually something silly to laugh at – something to lighten our moods – to help us forgive each other’s impatience.

I’ve learned that having the capacity for compassion and forgiveness goes a long way when you’re living with PD. Plus a healthy sense of humor with a dash of fun and a willingness to laugh at yourself.

“Have you got your phone?”   from the 2016 Winter edition of the Parkinson’s Perspective

Sharing the Carepartner Experience

Keep the Conversation going at a group just for you

PRO currently hosts more than a dozen support groups just for carepartners! Some groups are in person and many are virtual. Learn more by calling the office, or do a quick search on the support group calendar by using the key word “Care Partner”.

Ready to Connect?

sharing the carepartner experience

PRO currently hosts more than a dozen support groups just for carepartners! Some groups are in person and many are virtual. Learn more by calling the office, or do a quick search on the support group calendar by using the key word “Care Partner”.