We all like to be active, and useful in some way. Some people put everything into their career because it gives them satisfaction, or they are helping others. For some, family is everything. Other people like to go to church, garden, volunteer or play sports. This doesn’t change when we get old, and it doesn’t change even when people have dementia or are in nursing homes. Yet, for some reason, carefully considered and well-funded lifestyle programs are not at the core of every nursing home.
My paternal grandparents walked for hours every day because health and fitness was extremely important to them both. They lived in an idyllic country setting, and rain hail or shine, they strode out across the fields and marched up and down the hills that surrounded their property. Whenever we visited, we too would slip into our gumboots, and traipse alongside the creek to see the fairy glens, or to feed the racehorses on the adjoining property.
My other grandparents had a public trust home, and their garden was their absolute joy – manicured lawns and carefully chosen floral displays. They had the nicest front yard in their entire street, probably in their entire suburb. Next door had rusted cars and rubbish strewn on their lawn, and yet all I remember of visits there is the peace and quiet of a summers day, the grass cool beneath our bare feet, the bees humming and the smell of roses in the sun.
Neither of my grandfathers made it to nursing homes, but both my grandmothers did. Two very different ladies, but who both had always been very active and social people until old age caught up with them.
My grandmother had Alzeimer’s Disease – a terrible slow decline that robbed that proud and intelligent woman of so much, including her very freedom to roam as she pleased – though she did still “escape” on occasion! In her final months, her lifelong trim and enviable figure had softened considerably as she put on weight through inactivity – this would have absolutely horrified her had she still been aware. I can’t imagine how difficult it must have been to convince her to sit still and watch television all day – that woman never sat for more than a moment in her life without something in her hands, shelling beans or sorting papers.
I visited my Nana as she settled into her nursing home – my brother was very sick and my parents couldn’t go, so I went down for a weekend to make sure she was okay. Her small room had a view of a very sparse little garden bed with one straggly rose bush in the middle of wood chips, and she just smiled when I suggested perhaps she could ask to get a few pots of flowers placed outside her window. She liked the rose bush well enough, she said, and she wouldn’t want to put anyone to any trouble.
I found the lifestyle calendar sticky-taped to the inside of her wardrobe, and pointed out some of the activities that perhaps she might like to go to, when she’d settled in. We both pretended she might go along in a few weeks, but I knew my Nana – she probably spent the last few months of her life sitting stubbornly in her room, looking out at that rose bush, fingers itching to give it a good prune.
Lifestyle programs are not just about keeping people occupied so they behave. They need to be as enriching and engaging as early childhood programs are – and yet many of them are run by kind volunteers who have no resources, nor proper training in order to be able to provide individualised programs. Varied and interesting programs can only be created if you have training and funding to make them reality.
A nursing home can quickly become more like an institution if residents are unable to come and go as they please – which is becoming more and more common with homes that mix low and high level care, and have locked memory support units. I once visited a home where none of the residents could leave without signing a risk form first, and many confided to me that it felt like they were being treated like children. Duty of care is one thing, keeping people locked indoors when they are still capable of taking calculated risks for themselves is another. There must be a balance.
We received this email to our campaign from C:
I am a lifestyle coordinator trained in Dementia Practice Cert IV with Alzheimer’s Australia. I have found doctors, nurses, PCAs, managers do not understand dementia. We need to have more support in dementia wings [memory support units]. My company allows 1 hour per resident per week (69 hours of lifestyle per week.) We are run off our feet. People want outings, entertainment, games, cooking, walking groups, gardening groups, shopping trips, breakfasts, family events etc – and the families want this too. I can [personally] volunteer 10 plus hours [of my own time, unpaid] per week in order to run these programs and provide documentation, run and type up monthly meetings, calendar, newsletter, plus keep on top of the continuous improvements and staffing education. It is exhausting and I am behind, our dementia wing is then left unstaffed with lifestyle. I would like permanent lifestyle staff in dementia wings. Lifestyle cannot do it all.
“Lifestyle cannot do it all” is the part that stood out for me. Lifestyle programs are so vitally important, but they are also just one part of the care package. I have witnessed one lifestyle staff member to a room of around 30 residents, supervising them playing mini golf. There were no care staff or nurses in attendence. The lifestyle staff member had to press a call bell to summon assitance to toilet residents or to seek help with behavioural difficulties. This is unacceptable – it is not a baby-sitting service.
I have seen carer-led lifestyle programs in the past, and they were actually quite well-done, as the carers know individuals best, and it helped to form bonds. However, care workers are not provided with adequate training for this model to be sustainable without some input from a lifestyle coordinator.
Thank you C for sharing your story, and hopefully together we can raise awareness of this critical component of care, and gain increased funding and resources for homes across Australia. Elderly people can still learn new skills and find enjoyment from life. Sitting them at a table to play bingo five days a week is not acceptable from any self-respecting lifestyle program.