In our support group meeting we start with a topic or group of topics that are put together by a committee that meets the Saturday before out scheduled time. A partial list of these is below.
Our meetings are never very formal. Some of us, the core group, will kick off the discussion by talking about the topic(s) on our list. I count on John who is one of the core group and a retired teacher to keep us on track but it is okay if the conversation wanders off into the weeds because sometime people need to just talk without worry and fear to a group that understands and empathizes.
- How do I (care partner) know when to help and when to let him or her do things alone?
- What thoughts or actions help you cope? Why do those work for you?
- What are a care partner’s typical feelings during the day?
- How to manage stress; as a caregiver, as a PD patient
Tom and his wife Joyce attended the first meeting that Cheryl set up a few years ago. Tom was in the early diagnosis stage of Parkinson. They came to no other support group meetings but remained on the email list. The initial meds dose surely worked to initially relieve most if not all of his symptoms. It did for Cheryl too about fifteen years ago. But lately his unsteadiness became worse and he had had a fall with more than incidental injury. Mostly though physical therapy Tom and Joyce came to the previous meeting and came to the meeting on Monday evening.
Tom spoke to the second list topic about coping. He remarked that his doctor said in conversation that instead of focusing on what you have lost, focus on what you have gained. Tom said he was still working on that but I thought the idea is an excellent way to grow and change and stand up to the challenge of Parkinson and his damnable disease.
So often we focus only on losses. It is the basis of all grief and sadness. It promotes anxiety and worry. It takes a lot of time. It is a stresser. It is the source of most news stories on television. We are attracted by tragedy and loss.
As a thought experiment I felt the need to look inside my own thoughts and make a list of gains and losses, not necessarily from the beginning of this life with Parkinson but as they come to me as I write this. I am not dealing with symptoms physically as Cheryl is but it affects my life with an intimacy I did not intend to sign up for when we married many years ago.
Below is my list so far:
- a greater knowledge of how much is lost to a person that has dementia.
- circular repetitive conversation
- consideration to how things are said (tone and volume)
- new friends,
- simply meeting with new people that are not friends,
- different view of walking paths,
- empathy and concern for others,
- end of life planning,
- new found cooking strengths,
- unwanted attention,
- unwanted advice and opinion and solutions
- meditative thoughtful discernment,
- new socialization,
- family closeness,
- family envy,
- party envy,
- care for spouse, growth in knowledge
- patience and resilience, less “flying off the handle” in various situations
- how to deal with fainting spells
- how to deal with falling
- how and when and who to ask for help
- inner calmness
- close attention to safety concerns.
- close focus on safety,
- slow walking, not strolling, slow walking
- knowledge of skilled medical care;
- prayers and kind thoughts from total strangers
- mobility and spontaneity;
- spousal conversation that is not tainted with cognition failure
- implied requests or “helpful” comments (instead of, “it looks cold outside” say, “please put on a jacket”)
- consideration to how things are said
- confidence in the future;
- ease of travel;
- disinterest in end of life;
- spontaneity of exercise;
- inner calmness
I may add to these lists as life goes on. Somethings appear on both lists because they are both. Somethings on the gains side are not always good things. Somethings on the losses side are good things. Perception is everything and nothing.