You recently remarked about the labels “caregiver” and “care partner”. What irks me about these terms is that they are often used as if all who live with Parkinson’s have the benefit of someone nearby to help them get through the day. Many of us aren’t so fortunate.
In Australia, 24% of all households in 2011 were identified by the Australian Bureau of Statistics as occupied by one person only.
The proportion of single person dwellings is higher in cities.
Those living alone with Parkinson’s are under-represented in Parkinson’s support groups mainly because they have no way of travelling.
How many of those living by themselves while trying to cope with advancing Parkinson’s are similar to the following gentleman? He lived in a mobile home, was single, had been diagnosed with PD, was in his early fifties, had worked for a small employer, had no employment-related sickness benefits, had handed in his driver’s licence, and survived on a Government pension. As a Council member of my state association I’d been asked to increase the number of support groups in suburban Sydney. We arranged to meet the local press in his area and tell them of how much a Parkinson’s support group would mean to those like us. He did so admirably.
Shortly after, I heard he’d moved into a nursing home. I asked its location but those approached didn’t know. Similarly, a single lady who attended my local support group “disappeared.” She has moved out of her residence; we are unaware of her relatives.
The special challenges of pwp (people with Parkinson’s) who live alone are seldom featured in Parkinson’s publicity. It’s as if we don’t exist.
Similarly, pwp in the workplace are paid scant regard. I know the principal of a legal practice close by my financial planning office. John was diagnosed with Parkinson’s disease six years ago. His specialty is criminal law; much of his time is spent in court defending the accused. I also know an architect with PD and am aware of a medical specialist who works four days a week. Then there was a professional development day when from the audience I heard a gentleman tell us that he was still working five years after diagnosis.
I used to be keenly involved in attracting prominent speakers to my support group but have withdrawn to concentrate on my business.
There are over sixty Parkinson’s support groups in the state in which I live in Australia. To the best of my knowledge, none can be attended by phone or internet. Instead, I tap into U.S. internet resources (and am most grateful.) Younger pwp make great use of the internet. National boundaries mean little as people converse in chat rooms, by direct email, and other discussion groups.
In my part of the world, the stereotype of a person with Parkinson’s…..a middle class retiree of mature years living at home with husband or wife….may become reality as young pwp lean to the internet while pwp in the work force can’t see any relevance of locally-based Parkinson’s associations. Those living alone face not only the tasks of daily life….for which those with care partners have assistance….but live with the constant tension of wondering “where will I go from here?”
The following was included in my state Parkinson’s association’s 2012 annual report. Its author was “anonymous” but it could even have been me.
My day starts the night before. The timing of medication, when I’ll shave, when I’ll do up the top button on my business shirt, when I’ll leave home, when I’ll arrive at the railway station, when I’ll do damn near everything are planned and jotted down. When medication hasn’t cut in and fine motor skills are beyond me, I catch up on reading.
I was diagnosed with Parkinson’s disease in 1998, live by myself, remain in full time work as a certified financial planner, and am 67 years of age. My capacity to function physically is dictated by medication. For me, relief also follows intense exercise.
Some activities used to rate highly in priority but are no longer rated as important. Gardening is an example; I took pride in my vegetable patch and Australian native shrubs. My back yard now is full of weeds. The front lawn is spic and span, thanks to those paid to keep it that way. Some aspects of daily life remain high priorities; a slip in these won’t be tolerated. Attention to clients is uppermost.
Life isn’t a breeze. Every four or five hours, tremor emerges increasing up the Richter scale if medication hasn’t been taken on time or the day is stressful. Rigidity can overtake me, aggravating an already clumsy body. With Parkinson’s disease, the mundane becomes important. My ability to reach the 7.15am breakfast meeting is determined the previous night when creating the “to do” list for to-day.
Dressing takes me at least double the time it once took. Every button is a challenge. If all has gone to plan, the medication has cut in by the time I reach the meeting venue. I find somewhere private, do up the button at my collar and put on my tie. I dread reaching a stage at which my dress standards are any the less because of Parkinson’s.
Sleep is a precious resource. Many are the nights I lie shaking in bed around 3am until attempting to sleep seems futile and I repair to my computer to see if any northern hemisphere friend has contacted me.
At 8.30pm, three nights each week, I head for the gym. I’m also there for an hour on Saturday or Sunday. Vigorous exercise is my outlet.
“You look a different man when you leave compared to when you arrive” said the gym receptionist last week. She’s right! I arrive at Aquafit gym around 9pm, often shaking too greatly to use my bar-coded entry card. The receptionist lets me in. My gym buddies are mainly people in their teens, twenties and early thirties. They encourage and assist me immensely. I try to return their kindness.
I go home exhausted but happy. Sleep comes quickly and endures longer following exercise.