I notice that the people who assist POWs or people with parkinsons are referred to as carers in a lot of the publications. My son who is severely disabled with cerebral palsy lives in his own flat assisted by two PAs or peronal assistants. He prefers this term as they assist him with his independence and it feels more empowering than being looked after by a carer.
This may seem a small issue of semantics, but I like his reasoning and I too prefer a PA to a carer!
Jocelyn
I agree with your sentiments and how we name things is important. I find it entirely inappropriate to call my husband a carer. I care for him as much as he for me.
I am a Kiwi currently living in UK and the word carer is used here alot . I feel ok when it is a spouse or partner who actually does physical caring but it seems to be a blanket term for any support person. It is especially inappropriate i feel when used to describe the support people of younger and active PwP. But then I often feel the language and focus of PUK still hasn't caught up with the fact that younger people get Parkinsons and they have only dropped disease from the name of the organisation recently. But i digress! Your suggestion of PA i like but with reservations because it again doesnt fit all relationships. In your son's case it does. i guess i wouldn't use the term to describe my husband doing that role.
I have thought about this alot and my current thinking is that In publicity support person be used as the blanket term which can then be explained as required to include supportive family and friends, personal assistants and carers. The idea being to find a term to capture the differing relationships according to each circumstance. What do you think?
Yes, you have explored the options thoughtfully!
I guess we all feel a little differently depending on our age, context and situation. What is important is that those of us with parkinsons (or whatever) do not feel disempowered by the language used about us. We need to feel supported (as everyone does actually) to do what we can independently and to do what is difficult for us with support. Caregiving has got some connotations of things being done to you maybe without choice.
Once again, my son Mark, when asked by someone if he could roll over, said "Yes I can! With assistance!
Jocelyn
thanks for the discussion. It has encouraged me to clarify my thoughts and now i think is time to write a letter to the editor of the Parkinsons UK magazine!
I've just read this and absolutely agree with your son that the term PA is much more empowering than simply 'carer'. I hope I don't reach the stage of requiring assistance, but if the time ever came I would hope for a good PA.........I like it a lot : )
this is a fabulous idea and very true.in marilyn warings book counting for nothing she compares the work of house wives to men who do the same work-and of course are paid much more.okamoto taro, a japanese artist with parkinsions was helped so much by his pertsonal care sorry personal assistant..we all know words matter
INTERNAL TREMORS.
muscles shake .twitch . no viable shaking..its internal.
I'm newly-diagnosed with PD. I understand the need for exercise, and thought I'd try Tai Chi.
When and what to tell people about Parkinson's