As much as I wanted to keep Patricia at home, there came the time when it was clearly too much for me. But until that time. there were three types of Carer assisting me to look after Patricia.
Personal Care Assistant
They came in each morning to shower Patricia, do her hair, dress her and make her bed. This was provided via a government and council program for a nominal fee and was managed in our area by Uniting Care Community Options. I also had a personal care assistant provided by Paraquad for one day a week and a home care assistant provided by Bethlehem Home respite Care for 4 hours a week at a reduced hourly rate.
For more than five years, I had volunteers helping me. Some are old friends from Patricia’s University days, some are local friends. But without doubt, what really saved me was the help I received from the Syndal Helpers, ladies from the local parish church St Christopher’s in Syndal – Mt Waverley which was our local parish church. These ladies initially got involved when Patricia was still reasonably mobile, taking her to the doctor, or to her support group, and bringing her back home. As her condition progressed, they stayed with her learning new skills, becoming very good friends and accomplished Carers. They came in on week days for 2 to 3 hours each morning and afternoon and learnt how to manage Patricia – giving her medication via the PEG, making drinks thickened to the proper consistency, helping swab her mouth out when the saliva and/or mucus built up, taking her to the toilet, cleaning up after “accidents”!, etc. As Patricia’s condition worsened, some of these tasks became redundant. One lady, who was in her late sixties, used to spend a whole day helping me to look after Patricia!
They are ALL wonderful people and I will never forget what they did for me and Patricia.
I strongly recommend Carers contact local church groups. It SHOULDN’T matter whether the Carer or the person with the illness are believers or not. The local men and ladies in our parish do not discriminate and that is how it should be. There are always people in early retirement willing to help others who are less fortunate. So try local church groups and try and encourage them to help. For me, it was a lifesaver, and I’m referring to my life!
From time to time, I found it necessary to employ ladies throughout the week to take over from me for those days allowing me to have a break. It also gave me quality time to do the things that I needed to do, such as designing this web site. At one stage, when I was getting up to Patricia quite a lot during the night, I employed a Personal Care Assistant (PCA) for three nights a week to attend to Patricia’s needs, such as turning her. That then progressed to a live-in Carer whose main task was to share the night time duties with me. The ladies who helped during the day were either retired Registered Nurses (RNs) or qualified PCAs and they worked together with the volunteer ladies.
As well as the above mentioned help, I also tried respite care in local nursing homes but that proved to be unsatisfactory. They just don’t seem to be able to cope with highly intelligent people who still have all their marbles but are very disabled and need a much higher level of care than elderly dementia people do. Again, I was fortunate to discover a public hospital in Melbourne, Bethlehem Hospital, www.bethlehem.org.au (http://www NULL.bethlehem NULL.org NULL.au/), that has a special wing/ward dedicated to people with progressive neurological illnesses. Predominantly focused on Motor Neurone Disease and MS but not restricted to those two. As well as the usual hospital nursing staff, they have a senior neurologist on site plus speech therapists, occupational therapists, physiotherapists, etc. Patricia was examined by the neurologist and accepted into their program, which meant she went into the hospital for two weeks respite, then came home for eight weeks, then back to hospital for two weeks, and so on. As well as providing respite care, they also carried out assessments on her condition and medications.
I was very happy with Bethlehem Hospital, but even there it was difficult to give Patricia the amount of personal care that she needed. As with all hospitals, they just don’t have enough staff.
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