Traumatic for family ...
After many years of suffering parkinsons disease my father, aged 85, had a fall, spent 6 weeks in hospital and came home to a different life, with my mum, aged 84, as his main carer. With no strength in his legs & severe PD he became bedridden, dependent on her plus paid carers coming 4 times daily to attend to his personal care. My parents are lucky enough to have 2 close family members nearby for practical support, without which all of this would have become even more traumatic.
These are some of my parents experiences in the last year – Nov 2013 – Nov 2014.
Carers who disrespected my parents by:
a. Using intimidating behaviour and body language
b. Speaking between themselves in a language unknown to my parents
c. Coming through the house in wet dirty shoes
d. Trying to dictate which clothes dad should wear to make their job easier
e. Using the toilet without asking
f. Expecting to sit comfortably in the lounge whilst waiting for their colleague to arrive.
g.LEAVING MY DAD NAKED FROM THE WAIST DOWN, HANGING FROM THE HOIST IN THE MIDDLE OF THE LOUNGE OVER THE COMMODE WITH NO PRIVACY.
My parents are paying for this care so they are the employers. Luckily my mum is a strong woman who knows how to stand up for her rights. After a year she has recently found out that she doesn’t have to let the carers in until they have both arrived. Previously the first carer could be waiting 30 minutes or more in mums house for the second carer to arrive late, more invasion of privacy. Also you will be told that each visit will be minimum 30 minutes. My mum has negotiated and now 2 visits daily are only 15 minutes long, reducing the cost of care considerably.
My suggestions to families with family members who you can see will not be able to be independent for much longer would be….plan for this eventuality, check out say 3 caring organisations, interview them, read the small print as to what the service actually is, and negotiate constantly.