Gillian highlights what it really means to provide full-time care for her mother who is living with dementia.
Every day can be a scary day for your loved one living with dementia but a stay in a hospital is a whole new level of frightening. My name is Gillian Clelland and my mum has severe dementia. My brother and I have cared for mum at home for the last 10 years.
Sadly, my mum fell and broke her hip last year and was taken to the hospital. My sister, brother and I took on shifts roughly: 9am-1pm, 1pm-6pm and 6pm till whenever mum had fallen asleep. The hospital had open visiting but frankly, I believe this should not apply to me because I was and am a part of the care team. The sad reality is that people living with dementia while in hospital need one-to-one care and that is just not always possible in today’s busy wards or today’s busy families.
As a part of my mother’s care team, my brother, sister and I had work to do:
- We were advocates. We had been granted power of attorney by our mum and we were responsible for medical decisions.
- We were a rehabilitation management team. We wanted to know her prognosis and what to do to help her get well. As a result of research, we feared that hip fractures in the elderly, with the complication of dementia are often a death sentence.
- We were cannula protectors, distracting mum whenever she was intent on pulling it out.
- We were her call bell. Mum no longer knew what that button was for or how to use it despite nurses thinking that she should.
- We were menu selectors. We chose food she liked, bringing in extra as need be. We fed her when she could not feed herself.
- We were fluid monitors, bringing drinks she liked and encouraging her to sip frequently.
- We were pee and poo assistants as sometimes mum would whisper she needed to go and just as importantly we asked for the bed pan to be taken away in good time. Knowing her intake, we could prompt mum accordingly to minimise accidents.
- We were spectacle and false teeth guardians, knowing where they were at all times and ensuring she wore both whenever needed.
- We were tissue and wipe dispensers, saving sheets and sleeves from snot and nurses from small spillages.
- We were medication double checkers. One night when the nurse did not have enough of a tablet, I implored her to fetch more. Missing even one dose of some regular medications can have an obvious impact on an individual living with dementia. And when you are trying to work out if signals are as result of pain or post op delirium, you really don’t want to be changing everything else from the ‘norm’.
- We were medication coaches. In hospital, individuals have the right to refuse medication. But mum wasn’t refusing medication – she thought she was being asked to eat little stones. We requested liquid medication wherever possible and grounded down others between spoons. We patiently tried, sometimes for hours to ensure mum swallowed tablets when no alternative was available.
- We were daily nightie washers, ensuring a continuous supply.
- We were entertainers. We played the Playlist for Life music she liked, played dominos and shuffled cards.
- We were mum’s reassurance. We sat quietly holding her hand providing the constant comfort she needed in a frightening and unfamiliar world.
Not everyone has family that can roster themselves like this and until the healthcare sector embrace the real need present, there is a continuing risk of poor outcomes for individuals living with dementia. The Government too must recognise that carers still actively care for their charges when in hospital and bear additional costs of travelling. Carers allowance should not be stopped in circumstances where carers continue to care.
Over one year on, mum can now walk with a little assistance. She is not in pain. Despite her challenges, she is still smiling, thriving as best she can living with dementia.