After my blog yesterday, talking about safety vs autonomy, and my feelings about the traditional styles of residential care, I felt it important to also say, there are many in the sector wanting to improve things for people with dementia and their families. There are, as highlighted in some comments, many family care partners who also want much better for us, and who do not wish to ‘dump’ us anywhere, nor place us into facilities that do not provide optimal care. Although, as I discovered, sometimes if there is a crisis there is little choice.
Also, I realise fully that almost all care partners want the nest for the person they support with dementia, and would not ever want to come across as critical of them. Sometimes, I may ask for new ways of communicating with us, or behaving towards us, to improve our experience, and the bonus for a person providing support for us, is their experience will likely improve as well. It is always meant to be win-win. Often though, the Prescribed Disengagement ® has already set us all up to fail.
So, today I am adding an open letter, not actually sent yet to Tamar Krebs and her A-team at Group Homes Australia, but I fell sure once she reads it, she won’t be unhappy! But, if there is a provider wanting to look at new ways to provide residential support for us, or a care partner looking at options, do connect with them. I would, quite happily live in one of their homes… They have somehow found a way to ensure autonomy and safety are working in harmony, in a way that does not seem to demean anyone, or make anyone feel locked up.
Dear Tamar, Jonathon, staff and residents,
To say it was a privilege to visit and spend time with everyone at Group Homes Australia is an understatement. Bravely and fearlessly led by the founder, Tamar Krebs, I can only say I feel Blessed and honoured. Tamar, and Jonathon (Gavishon) hosted my two days with them, ensuring my time was more than well spent.
For some background, I had agreed to work with their team, and to participate in a public forum, giving a short presentation as well as participate on a panel. The whole time, I was looked after as if I was a member of their family. It also appeared to me that those paying for their ‘accommodation’ otherwise known as ‘residential care’ were being supported as if they were family. This style of residential accommodation and care is the best I have seen in Australia, and I would be keen to visit other countries to compare their versions of ‘group homes’ or dementia villages, although already doubt anyone is doing it better.
What I felt when I was driven up to each of the three group homes I visited, was that they were indistinguishable amongst all the other residences in the street and suburb. They did not have emblazoned on the front door or gate “Group Homes Australia”. They preferred instead, to ensure the dignity of those living there, and finding other ways to promote themselves. As I entered each home, there was a lock to the front door, but, if it was my home, I would also lock out any possible intruders or visitors, only allowing them entry upon ringing the door bell. So, not locked in, simply doing the same as I would do in m own home.
Upon entering each home, all with its own individual style and flair, and the feeling of being a guest in someone’s home was overwhelming. I definitely had no sense I was visiting a ‘facility providing residential care’. There were people in rooms folding up the washing, staff and residents in the kitchen preparing meals; smells of cooking, and not a hint of urine. Doors that opened out onto gardens and recreational areas, with washing lines, and one even with a swimming pool. Laundries in working order, various areas to sit and relax or play cards or watch television. Freshly cut flowers around the homes. Rooms, some with en suite bathrooms, some not, just like most private homes. Many with double beds, and individualised furnishings and personal belongings. Picture frames around the homes, belonging to the people living there, corners with nick-knacks of meaning, not meaningless, cheap pastel prints on walls.
Staff who sounded and looked like family members. Family members sitting around relaxing waiting for a mother to return from some shopping. Dining rooms, allowing for mingling and shared meals, and smaller eating areas allowing for more privacy. Meals also served in bed rooms, and at times suited to each individual. The Finance Director had not had lunch, so he joined the group in the kitchen to make himself some toast. It felt, looked and sounded like one big family, sharing time together.
It was easy to chat to the residents of these homes; every person on site seemed at home, and at ease, and it looked … and more importantly, it felt like I was visiting them in their own private homes. Unusually, the founder and CEO, the senior staff, the new staff, the less senior staff, and the volunteers, and those living on the homes were all ‘working’ together, no sense of hierarchy or management, pay-role differences or class distinction. In fact, there was no sense anyone was even working!
It was also hard to tell the staff apart from the residents, other than by age. It felt like everyone either lived there, or was a family member visiting. An office in a garage of one of the homes, part of which is also used for storage for those things necessary for people requiring 24 hour assistance to live, felt like a ‘normal’ attachment to the home, rather than a working office. The accountant wearing the gorgeous shoes (yes, my middle name could be Imelda!) attended the Leaders session the next day.
Quite frankly, having had to help find three beds for close family or friends requiring residential care, and having had to actively consider it for myself, this is the FIRST time, and ONLY time, I have felt I would or could move into ‘residential care’. As a person living with a diagnosis of dementia, I cannot tell you how much of a relief it felt to see someone who ‘gets’ it, and who has taken such a risk (financial, and professional) by refusing to do it as everyone else is doing it, and following their intuition, their heart, and actually ‘doing it’ so well. Someone brave enough not to wait for evidence, or regulation, of government funding to support a new model of residential care.
I may have helped this terrific group of people feel like they are on the right track with what they are doing, perhaps even validated this in some small way for them… but the gift that you have all given me, is that I was right to speak out at all, and to keep speaking out for ‘better’, and for what in my heart and soul, I felt ‘needed changing’. Like them I do not necessarily have the evidence based research, but my heart, my soul, and my practical experience as a family care partner, and as a person with a diagnosis of dementia, told me what the sector has been doing is not only been wrong, it is against our human rights.
Tamar, Jonathon, you and your Group Homes Australia family – staff and residents alike – have validated my few years of often lonely, and often discounted work and ideas. I owe you all a deep gratitude of debt for helping me feel less alone, and to remain motivated to keep going, while I still can.
I felt humbled, and for some days, even unable to write or blog, as it felt far more important to simply accept and allow the positive feedback you ALL gave me to sink in, and for the brilliance of what I felt for what Tamar, Jonathon and the team are doing, to ‘settle’ into my heart.
Thank you for being a fearless leader Tamar, thank you Jonathon for your practical support and terrific conversations, and very special thanks to your wonderful team.You have all given me hope.
Fondest wishes, thanks, and love to you all,
Kate Swaffer xox