Providing assistance to those who care for loved ones living with dementia.
At present the National 10 year ACTION plan has expired . A new plan has been sent to everyone for your feedback . It’s chance to share how the system could strive to be better. If you have experienced a loved one journey in dementia or just want to have your say “if” , this is your chance to impact how we as a community find our way . Closes in the 31st January, it will only take 15 mins . Read the summary paper and have your say! https://consultations.health.gov.au/aged-care-division/ndap-public-consultation/
Mums dementia started a lot early than we knew . Mum was a private person but all ways socialised . In reflection I see her sporadic disinterest or annoyance of a flourish the activity which is common for young families was an indication to the start. Slowly and ever so gradually mum became dependent on dad. I wonder if the constant burning of her hand , was also a early sign , eventually this meant dad would take the responsibility of meals . And more daily independent living tasks followed over the years . When dad passed away in March 2019, we began to realise just how much of dads work enabled mums severity of dementia be lumped into the tired/ or forgetful basket . We had dads funeral on his 79th birthday. Dad passed away due to complications of heart failure . His doctor gave him 6 months to live in 2018. He survived another year but did not tell us his expected end . I would of spent more time with him. I would of listened more readily when he suggested that mum might need a home . Not for us , but for dad, as a carer Dads work was endless and in with his own health issues it was only a matter of time . It is is my hope our personal story may assist you in caring for your loved one at home and assist you in the many different milestones you as a family will encounter . From respite, NDIS services, home are, and palliative care issues , products that work that help and don’t, home modifications , mistakes we made , but finally the Joy we remember now forever.,
Cleaning up my emails and I came across a letter I had written in response the 10 points of recommendation which came out of the Royal commission into Aged care .
It was in response to the principles suggested by Professor Fleming and Kirsty Bennet with in the scope of accomodation reform . I received a response from the department for Dementia, Diversity and Design Branch
Australian Government Department of Health.
It was at a time I couldn’t process much more, as mum was declining. It’s tough watching your loved ones fade, you never feel like you have done enough. But I won’t ruminate on this. What I can do is now act on all those ideas I saw , maybe assisting others . The study Im involved in at UWA , and my way thinking that was shaped by great ideas in architecture , I see I can assist . Plus we lived through the system whilst we cared for mum at home , there are things I / we would of done differently and people I would of listened to more of.
We need to get it right from the bottom to the top and then the middle will be good. We need to continue assist those in midst of caring for family living with dementia and provide some autonomy in being able to provide good care and in the family home if people choose.
Assistance could be by creating the right amount of policy , governance that is not too restrictive but still accountable. Are we doing it right , are we allowing innovative practices to flourish. ? I know the system is not coping now, more people at the top could mean less people at the bottom, or great innovative thinkers leading and delivering great policy could mean better services too. The response to my letter I come across asked me join a public consultation group , which one of the recent activities is to comment on the new Bill which will see a new role created in aged care, Inspector General for Aged Care. This bill will go forward around the 27th Jan 2023 . I will read the document this week, but my first unbridled thoughts are; is this a step forward . ? I saw how hard the aged care workers are working and struggling to provide the bare necessities of care. Will this assist them? One beautiful lady was with my mum as we couldn’t get to sit with her in time as she took her last breath. See the link below and join me in having your say. It will matter one day . Vicki
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