Quality
and Satisfaction in the Ordinariness of Daily Living
As an Exert by Experience for the Care Quality
Commission, I am in the privileged position of being able to communicate with
people who live and work in residential settings. I particularly appreciate residents who are
willing to talk with me about their experience of life before and after a
crisis and those people whose long-term conditions have progressed through into
older age. Residents are pleased to
have a visitor, they enjoy talking about their home, the community in which
they lived and the work they accomplished in bringing up a family and going out
to work. Residents are far more likely
to become alert and engaged when talking about the past and those stories are
always full of interest. I have listened
to people telling me how they juggled three cleaning jobs in order to feed
their family. Sitting in an adjacent armchair was a resident who said with pride, 'I worked in 10 Downing Street.' My only regret is the limited time I can give
to each person. When it comes to the
point in discussion when they tell me how they came to live in a residential setting
and what it is like day-to-day, they often become less communicative, more
wistful, sad and occasionally angry. This change in mood and
expression is understandable when one recognises the huge losses people have
experienced in what is often a short space of time. Examples are that people wanted to return
home and did not choose the setting in which they now live, a relative or
friend made the choice. Often there was
no opportunity to return home to take a last look and decide on what
possessions they might like to have around them. Usually a relative or solicitor dealt with
finance as their home was sold to pay the fees.
It is not unusual for their partner to become ill or die while they
themselves are in hospital and too poorly or not able to attend the funeral. Some people do not even know their partner is
ill or has died. ‘We haven’t told them
because it will upset them.’ Of course
it will probably deeply upset them when they discover the news and then they
sit with endless time to dwell on what might have been, their own declining
health and the grief and confusion that becomes more profound with the agony of not
knowing. Health can quickly deteriorate
when hope has gone, particularly the hope of returning home.
I clearly remember talking with two women who
had become friends on arrival in the long-term setting and shared a double
room. They told me that friends had gone
to each of their homes and packed all their belongings in suitcases. The Home’s Manager allowed them to keep these
belongings that were placed high up on top of cupboards. Once a year the cases were taken down and for
one day the women reminisced over their beloved possessions. They told me that each year they lost a little
more of themselves as they discarded some of their possessions.
So what is meant by quality and satisfaction in the
ordinariness of daily life? So often I
hear that a coach outing has been arranged, sometimes twice a year, whereby
residents are taken to the coast or countryside for a day. Each week there are exercise and music
sessions and the inevitable hair dressing and nail cutting and polishing, both
personal care tasks. Fundamental to most
peoples’ lives is to ‘give and take.’ Satisfaction in day-to-day activity is for the ordinary everyday happenings as well as for those larger, pleasurable for some activities. Risk-taking rules and restrictions are often incorrectly interpreted and leaves the majority of people sitting in an armchair, giving up on making sense
of two televisions tuned in to two different channels, providing incoherent messages, a
radio blaring out music in a corner of the same room, and the clatter of
crockery and chatter that closes the mind and eyes in sleep. Dozing and sleeping are much easier to
achieve in an over-heated environment and with a cacophony of noise. These scenarios are a recipe that leads to
residents saying to me, ‘I’m useless, I can’t do anything, there’s no point in
living.’ When a staff member comes and,
amid the heat and noise, says, ‘Are you alright, Mabel, would you like a drink?’ Mabel mumbles and the staff member turns to the next person. This is not a criticism of staff, it is the
system and procedures that allows little or no time for meaningful conversations,
little time to support people to accomplish the ‘ordinary’ that most of us do
every day, and no way in which to provide and support residents on a
‘one-to-one’ basis. Most of what goes on denies residents their rights, often residents and staff not understanding what those rights are and mean.
Most of us have
hobbies, people we like to keep in contact with and share our lives, local places
that we like to visit, and ordinary home-making tasks. One resident said, ‘If only someone would
help me turn my underwear drawer out and tidy it. I’d like to shop for some new clothes.’ Another
resident said, ‘I’ve lost contact with friends. I’d like to write some letters
and cards, remember peoples’ birthdays, make a phone call, but I don’t know where my address book
is and I can’t get out to choose cards.
People just don’t have time to do these things, staff are too busy and I seldom have visitors.’
As a nation we have become too bureaucratic, focused on
filling in forms, making notes and often caught in a cycle of paperwork and meetings, most of
which are unnecessary and reduces quality of life to endless emptiness. This blog will, I hope, provoke challenge, stimulate and give opportunities for residents to talk about what they would like to happen in response to issues raised. This would be useful as it might get providers of residential
services talking to each other. There is
a real fear that business will suffer if other providers enter their
premises. ‘Activity’ officers are often
isolated and untrained and have no part in in networking with neighbouring activity officers. They are often part-time and have either no budget or money earmarked for supporting fifty residents, many with
severe memory loss and frustration, labelled ‘challenging behaviour.’ The question is, ‘Why do people develop
challenging behaviour? One resident
who was labelled as having severe dementia, whom I met twice within nine
months, told me in answer to my question, ‘What would you like to be doing
right now?’ responded, ‘I’d like to live a little.’ This resident was in bed in exactly the same position I had met him nine months earlier.
I am so appreciative of the
hundreds of conversations I have had with people in residential settings and
this last example, I believe, says it all. It is about the quality and satisfaction that can be experienced in the ordinariness of daily living.
Ann Macfarlane OBE
July 2015
