My Parkinson’s spouse has many physicians, as PD has taken its toll on so much of his body. I go to most his medical appointments as I am his constant observer, and I am the one fighting for his health. I have decided to write about having a voice when speaking with physicians as I find this extremely important, not only for me to be aware, but most importantly for him to get the best care as possible.
First and foremost is having a sit-down conversation with your loved one. Lay it out to him/her. Explain how you understand this is their illness and their life, but it is yours as well. You are the one who is with them more than anyone else and you take responsibility and pride in your care and love for this person. Let them know you are not there to demean them, but to be their cheerleader and a proponent for them. Keeping those open lines of communication is key to this team work.
I am an active member and administrator of an online caregiver support group. I find when I have questions and concerns, that discussing with other caregivers, who have been in the trenches, are my best resource. I recently posed this question to them and received an abundance of great advice!
Do you have a voice when speaking with your spouse's physician? I really would appreciate tips and ideas. Here are a few of their responses:
- Best advice - get Medical Power of Attorney (MPOA) and General POA that are effective immediately. Take pad and pen to write questions and answers and anything doc says. And make sure the office knows it's okay to talk with you. There should be a HIPPA form on file that gives docs/nurses permission to speak with you and anyone else your spouse designates.
- I always discuss the things I want to talk about at the appointment with my spouse prior to his visit so he doesn't feel like I am completely taking over. I always go with him to appointments too. His doctors are also aware that I am his caregiver and administer all his meds, so that really helps as well. There are times too that during appointments my spouse tried to minimize changes in his condition and I did speak very freely at that point. He knows that we are a team and I have his best interest at heart.
- I am my husband’s legal guardian. It helps tremendously in all areas.
- I write down concerns that either one of us has. I have always gone to my hubby’s doctor’s appointments and have always been able to give input, even before I had a MPOA. Really, I think most doctors like to see the full picture so they can better treat their patients.
- I created a patient binder with all my husband’s info. We have a “clinic notes” section to write in what we talk about with the doctors, and what follow up needs to happen. I have a time line of everything which is helpful for me to keep dates straight. The last time he had to go to the ER, the EMT asked if he could take it with him in the rescue. When I got there the nurse had it and was already entering his history into the computer. If you go prepared with a binder containing meds list, recent doctor/hospital visit discharge reports, medical history, etc., and provide more details, the doctor will listen to you and even ask questions.
- The trick is to not contradict your spouse but to phrase things in a way that add additional information.
I was so amazed by the outpouring of advice I received from these wonderful caregivers. I have learned a lot and am still learning, and being involved in a support group that is there for me has been abundantly helpful.
Keep your voice at the medical appointments for your loved one. In saying that, be considerate of all they are going through, it is very difficult on them. (We know how difficult it is on us). It is a fine line that we must walk on when caring for our loved ones. We want to encourage them to hold onto their dignity throughout this Parkinson’s journey.
Jane H. Davis is a registered nurse, volunteer, author, speaker and spousal caregiver. She is a mother of two and grandmother of five. She is also the author of First Aid for Heroes, a memoir of her time working as a Red Cross volunteer at Ground Zero. You can read more from Jane on her website, www.JaneHDavis.com.