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!