Telling People I Have Parkinson’s
Today in Sunday School I told my friends that I have Parkinson’s. There were a few gasps, and a few saying at least now I know what’s wrong, but everyone was very supportive and tried to be very positive. We even had a special prayer time for me and for my DH, who has the burden of seeing another care giving task in his future. That part of this disease bothers me more than anything else. We thought we would be through with our care giving when my Daddy finally passes, bless his heart, but now it will just start all over again for him at some point in the future.
We can only hope that new medicines and maybe even a cure will be found by the time I am at the stage of needing full time care. I choose to be optimistic and believe that the meds are going to delay the debilitating stage for me for a long time. I am exercising and eating well balanced meals, as well as getting plenty of sleep and drinking plenty of water, too. I hope to be starting the Tai Chi classes soon, as well. If there’s anything more I can do, I will do it. And above all, I know that God loves me.
I’ve already told my dear sweet hubby that I don’t expect him to keep me at home the way we were able to keep his dad and my mother. He will be a lot older and he’ll be doing it by himself, so there’s probably going to be a point where he just can’t do it all any more. I wanted him to know that I understand, but it just upset him to hear me talking about it, and he made me change the subject. I’m going to be praying a lot for him, that he will be strong through all of this. I love him so much.
I’m so glad you told your group so you can get support. That was very brave of you to do – so many people have trouble doing that but it’s really important to let people know about it. I read your post about being glad you can name what’s wrong – it is true that it’s very difficult when you know you have something wrong and doctors just can’t put a name to it. I hope the new medications are going well….As always you have my prayers and support.
Thank you, Ruth, for your prayers and support. I don’t know if I was particularly brave telling them. It wouldn’t have occurred to me not to tell them. We pray for each other and for others in our community each Sunday, so it was only natural to want our situation included on the prayer list. I specifically asked that they pray fr my DH as well, as this is just as hard, if not harder, on him than it is on me.
This is one of the biggest worries I have…that one day Graham will have to be my caregiver. I do everything I can to help my arthritic body keep well.
But someone really wise asked me once…”Would I not take care of Gray, if the tables were turned?”…and of course, I would. Without any hesitation, no matter how hard it might be.So what makes me think it would be any different for Graham?
I have researched respite for caregivers, as I have my mother to care for. I keep that list updated, just in case.We may need it someday.
You are doing all you can.Worrying about the future in a negative way reduces the positive thoughts that are sent out into the ether. Don’t let fear gain the upper hand.
My thoughts are with you. I know you will find a way.
Care giving can be very exhausting, particularly if it goes on for a long time with no end in sight. We both know that from years of taking care of two parents with Alzheimer’s.
I really don’t think I’m worrying, Marion, but being realistic. My DH will do everything he can to keep me at home, but I want him to know that it’s OK if he has to change his plans. We did finally move Pop into an Assisted Living Facility, but when he ended up in the hospital, we brought him home afterwards to die, rather than put him in a nursing home.
I went back and read some of the older posts. It sounds like you’ve only known about the disease a month or so. I hope the exercise and drugs keep the Parkinson’s at bay for many years. What an adjustment though!
I appreciate your work on the Blog Village and wouldn’t miss coming here each day.
I’ve been having symptoms for a long time that the doctors weren’t paying attention to, Sheila. But you’re right, I’ve only been actually diagnosed a fairly short period of time, and it’s a relief to finally be taken seriously and be on the right medicine.