Care Partners, the Wind Under Our Wings

My care partner Cecily.
My care partner Cecily.

In my last post I spoke of the relationship with our doctors and how they are a part of our support team. Well, there are a number of people in that support team. The most important member of that team, if you are lucky enough to have one, is your care partner. For most of us, that would be a family member or loved one. These angels are here to support the PD warriors (yes, warriors because of the daily battles we fighqt) whether we need their help or think we don’t.

For the PD patients reading this post who don’t have a care partner, I don’t know how you get along. If someone reading this who is truly alone in this journey, reach out to a PD support group. Believe me when I tell you that YOU ARE NOT ALONE. Feel free to contact me and I will try to help you.

For those who do have a care partner, please don’t take them for granted. They choose to be with you, probably because they love you. So when was the last time you told them that you love them?  When was the last time you said thank you?

I was making a presentation at a symposium in Tampa and made this point to the audience. At the break I was talking to a couple and the care partner wife was thanking me and the patient was quietly listening. I turned to him and asked when was the last time he had  thanked her. He didn’t remember. I said ” What is wrong about now.” He turned to her full of emotion and said those two precious words “Thank you.” She turned to him with a tear in her eye and gave him a big kiss. He immediately said “Thank you” again and to my surprise she kissed him again. He turned to me and said thanks (no, I didn’t kiss him). By the time I left, he was on his fifth thank you.

If you are in a support group, ask that every third month you have a caring and sharing meeting where the care partners go in one room and the patients go to another. The format we use is “What is said in the separate groups stays within the group (like Vegas).” One caveat is if there is a significant problem, we ask the individual who discussed the matter if we can get together with the other party.

So where am I going with this post? A major concern is the maintenance of a care partner health. The support group should address care partner issues as much as our issues. There are a number of websites that have checklists of things to look out for, like burnout, depression, and health issues that crop up from the relentless onslaught of this disease. I know I don’t have to tell you about the beast that never quite goes away.

As I reflect on what I have been saying, it’s really a three way relationship: the patient, the care partner, and the patient as care partner for the care partner. It really can be very simple: communicate, love, and take pleasure out of every day. Did I remember to say COMMUNICATE?

And once more  TWO SHOES ON AGAIN

 

Have you thanked your care partner lately? Thank them in a comment on this post!

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About bobharmon49

Parkinson’s Cure Research Funding, Inc. (“PCRF”) was founded in November, 2010 as a non-profit corporation dedicated to raising money for Parkinson’s disease research and patient support. The corporation’s main fundraising event is an annual golf tournament held in April at the Lake Ashton community in Winter Haven and Lake Wales, Florida. Proceeds from the event have been donated to the Michael J Fox Foundation. Prior to forming PCRF the first golf tournament was held in April 2009 and we raised $12,000. The second tournament in April 2010 raised $27,000. Our next tournament will be held on April 7, 2012. At each of the first two golf outings, 215 players filled the two 18 hole golf courses at Lake Ashton. PCRF was founded by Bob and Cecily Harmon. Bob was diagnosed with Parkinson’s in 2006 and is still very active playing golf and working to help find a cure for PD through fund-raising. He has recently been named to the Southwest Florida Regional Council of the Michael J Fox Foundation. Their mission is to drive ideas about local engagement opportunities to increase Parkinson’s Disease awareness, enhance education efforts and connect with untapped resources to develop the overall expansion of the Fox Foundation in Florida. The Harmon’s facilitate the Lake Ashton Parkinson’s Outreach Group which supports local Parkinson’s patients and their care partners. The group meets on the first Friday of every month at 10am at Lake Ashton and is open to the Parkinson’s community in the general public.

One thought on “Care Partners, the Wind Under Our Wings

  1. So true! I know my husband has ignored his own health because he gets so wrapped up in mine. Very important to make sure they are getting to the doctor and getting rest and a break from bring caregivers, no matter how much they love us. I’m so very thankful for my husband and can’t imagine what I would do without either! Thanks for reminding us to say it more often 🙂

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