Mary Ann is in bed now, watching television. I am sitting at the computer on the other side of a closed door, around the corner and down the hall in my office writing this post. What if she need’s me? How will I know? She needs my help to take care of basic bathroom needs. The Parkinson’s Disease has quieted her voice. Getting out of bed and walking out to find me is not always an option as mobility has diminished over the years.
I can hear what is happening in the bedroom through the surprisingly powerful speaker on the baby monitor sitting just to my left on the corner desk on which the computer monitor sits. I can disconnect it from the power cord, use the batteries, and walk outside or sit on the deck and hear her movements.
I have a love/hate relationship with another of our communication devices – the electronic doorbell. A number of years ago, I found an inexpensive electronic doorbell system that included two button units and the sound unit (about the size of a pager). I bought two systems. There is a button in each of the two upstairs bathrooms within reach of the toilet stool. There is a button next to the bed in case I don’t hear her through the baby monitor. There is a button on the table by the parking space for the transfer chair where she takes up residence each day. The sound unit (only one still works) sits in a central location.
Let me tell you why the relationship with that doorbell is a love/hate relationship. The sound of that bell rings in my ears. It immediately triggers that same reactive fight or flight response that helped our ancient ancestors survive. It means I must stop what I am doing and move, hopefully, to the right button location. The need may be an urgent trip to the bathroom or bedside commode. The need may be to pull a cover over her, turn her in bed, turn the television off, the ceiling fan on or off, have a drink of water, Tums for her tummy, a snack. It may be to deal with the mice or rats she often sees in the bed. Hallucinations and vivid dreams are gifts from the Parkinson’s that journeys with us. How can I help but hate the sound of that doorbell?
I love that doorbell. It is the bell that tolls freedom for me. Were it not for that bell, I couldn’t venture to another part of the house to write a post or listen to some music or read an article or calm my spirit with a moment’s peace. Without the bell, I would be tied to Mary Ann’s side — which, by the way, would annoy her more than me. Without the bells, she would have no privacy, nor would I. Without the bell she would need to be in sight every moment of every day until one or both of us cracked and crumbled.
I think I have gotten a little dramatic about the bell. It is just a cheap electronic doorbell. Mary Ann doesn’t even always remember to push the button next to her — but it helps when she does. The Parkinson’s is here to stay. We choose not to give it the power to rule our lives. If a cheap electronic doorbell defuses some of the Parkinson’s power to rule, so be it.
March 12, 2009 at 5:30 pm
Nicely said, Peter. Yes, writing is therapeutic. Cheryl
March 12, 2009 at 6:09 pm
Thanks! It is very satisfying. My challenge will be keeping the posts short. I have too many words looking for a place to go.
March 12, 2009 at 6:23 pm
Peter,
For just starting out this look great and I am sure it will help many others not feel so alone in dealing with their loved ones!
Sometimes just getting the words on paper helps with coping!
March 12, 2009 at 8:20 pm
I am so glad I found your blog Peter…it really is well written and presented and you are inspiring….we usually think of caregivers as being females…I don’t know why, but we do. I don’t what the statistics female vs male caregivers are but, you put many a woman to shame with your caring and loving. More power to you Peter.
March 12, 2009 at 10:12 pm
Always try to think about the way Mary feels when she has to ring that bell. Inside she is just the same person she was when she met you. It is just the outside that has changed. She treasures you more than the biggest diamond. She is so very thankful for the way you treat her and yet, she feels so guilty for making you feel that you should help her. That bell you talk about is music to her ears and to yours at times also.
I know for I have dealt with Pakinson’s for 27 yrs. and it just plain sucks…
March 13, 2009 at 4:37 am
Thanks for the idea for tonight’s post. Your comment is what led me to ask Mary Ann how she felt about the button and its implications. Twenty-seven years is a long time to deal with Parkinson’s and ride the roller coaster of unpredictable changes. Do you have the Parkinson’s or a Loved One?
March 13, 2009 at 3:51 am
Peter,
Well done Peter. Keep up the good work. You are doing a world of good.
Sue P
March 13, 2009 at 1:20 pm
Peter, I love this new blog. I absolutely see the value in sharing your experiences as a caregiver with others and to be able to reflect on the daily challenges of living for both you and Mary Ann–a real “win, win” situation. You are creating a wonderful resource for other families too. Despite “retiring”, you continue to be lead to make positive impacts in other people’s lives by what you do!