A Request for Help

I wrote this letter to Cheryl’s brothers and sisters:

In May and the early part of June I sat in a class of sorts, more like a seminar on care partnering and keeping one’s sanity. The seminar placed much emphasis on planning and executing time for yourself away from the constant activity of care giving. The seminar also placed emphasis on asking for specific help. I am writing this letter to you to describe some of those helps and ask that you find the time to do that for Cheryl.

Many of you read or have read my little blog about our life with Parkinson. It is a degenerative disease and it degeneration is agonizingly slow. But I notice little tiny differences as we move through it. I have always had a hard time asking for help in any form. This letter is an appeal to you to help your sister as she goes through her version of the Parkinson process. Some of these on this list will slow the mental decline that she is experiencing.

Below is a message and thoughts from a fellow blogger in New Zealand. I had no idea people far away were reading my little notes about us.

Acts of service, or perhaps my interpretation of it, is saying ‘I love you’ without saying it in words. While it is still lovely to hear those words the ‘Acts of Service’ are also powerful. They can be simple things like coming back into the bedroom after doing my morning exercises to find that – even half asleep – he has turned over and put the heat pump on to warm the room up for me. It is having him prepare dinner – even if it is just heating up some soup – when I need to sit down because of my current injury. It is putting the jug on and making a cup of tea for me while I shower. So many ways that we might do things for each other that might be seen just as a task to be done, but that if considered can be seen as that important ‘I love you’ without words.

Next time someone does something for you, no matter how small, consider that they are not just carrying out a task, but doing so from the heart and showing that they care. As we move through the years on this Parkies journey, those Acts of Service may become more significant and those that we as people directly affected by this condition can do may seem less significant. However, if they are done with love, no matter whether large or small therein lies their significance.

(2022) Kiwipommysue –My journey with Parkinsons

So as I make this appeal to you select one of the small things on the next page and make it yours and your gift to your sister, you should know that I truly appreciate things that you have done. Cheryl needs all of you. As we enter into the Autumn and Winter months the days are darker and the sun light is less. This actually makes Cheryl’s disease worse. Her head is a little goofier if that is possible.

  • Call on the phone on a regular basis. Our home phone is 513 731 9272 and Cheryl’s cell is 513 476 1586. She loves to talk to people on the phone. This is a hard one because she may struggle with finding words and names. You can play a guessing game but it is better to merely wait for her to find a word which could be a wrong one. (medical term is Aphasia)
  • When you are talking to Cheryl in person or over the phone, engage with her and her stories even if you are certain she is wrong about something she has said. The idea is to keep her calm and unembarrassed. (exception – do not let her become fired up about some event that is not going to happen. She will worry that she has missed the event.)
  • Talk about times in St. Bernard when you were kids. Picnics, visits to grandma and grandpa, Dad’s gas station, whatever. Her childhood mind is pretty sharp. (sometimes these memories make her cry.)
  • Visit often if you can. If I get a little warning I can make sure I have the correct soft drinks, etc. Early on when I was dating Cheryl, there was a lot of sitting around the kitchen table and talking about stuff. She likes that. (she misses these times.)
  • Or bring lunch and talk about what is happening in your life. If you do this one please let me know ahead of time. I have signed her up for exercise class four days a week but nothing on Wednesday. It might be a late lunch.
  • Come with us on “Anything goes Pizza Tuesday” for pizza and chatting. Text me and I will tell you where she has selected for pizza. (We have been doing this for 8 or 10 years now and it is a routine that she seems to enjoy. Our neighbors Jane and lately Joe Scheve have been coming with us.)
  • Have family gatherings on a regular basis and take Cheryl with you to visit with others in your family. You all know Cheryl is keen on having some kind of family picnic, party, gathering. Her theme is always the Witzman family tree but what she is really after is the kids to meet and know their cousins even far distant cousins.
  • Mail – snail mail – notes and cards to Cheryl, celebrating anything and everything. Halloween, Easter, birthday, anniversary, Christmas, Valentines Day. For years she adopted the whole birthday card thing and helped Elaine with her mailings. She gets very excited when she gets mail sent to her (or us.) It means so very much to her which is why it saddens me that she is no longer able to keep it up.

Any of these would be of great benefit to Cheryl. In many ways she has taken over your mom’s roll in her mind. I think it comforts her to know that everyone everywhere is okay. She will ask me at night where you are, where our kids are.

Thanks in advance for your help.

This is my Carpe Diem. Stay Strong and Seize the Day.