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GUEST BLOG: Grief & Loss in the residential system by Ann Macfarlane OBE

Losses that may be Experienced by People in Residential and Nursing Settings

As an Expert by Experience, and a full-time wheelchair user 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 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 working. Residents are far more likely to become alert and engaged when talking about the past and those stories are always full of interest. Sometimes a person will say, ‘I can talk to you because you’re one of us!’ I have listened to people telling me how they juggled three cleaning jobs in order to feed their family and then on to the person who worked in 10 Downing Street or other known establishments. 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 or nursing setting and what it is like day-to -day, they often become less communicative, more wistful and sadder. 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 include, people who often wanted to return home but found immediate transfer into a residential setting made it impossible to return home with no opportunity to do so. Their plea or request to visit their home responded to with, ‘Once you get stronger and make progress, we can consider it.‘

After a six-week residential stay, often with no active treatment, institutional life takes hold and confidence is lost. Often the placement has been chosen by a relative who has been told to find a care setting quickly due to a shortage of hospital beds.There is no time to study choices or alternative solutions. The decision has left no time to return home and may have had to be placed on the market to cover fees. This pain on hearing this news, often increases depression.The relative may be left feeling confused with bureaucratic administration, guilt , and themselves depressed or greatly relieved. Often there was no opportunity to return home to take a last look and decide on what possessions the person might like to have around them. Usually a relative or solicitor dealt with finance as their home was sold 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 visit or 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.This results in endless time to dwell on what might have been, their own declining health and the grief that becomes more profound with the agony of knowing or not knowing. Health can quickly deteriorate when hope has gone, particularly the hope of returning home. I clearly remember talking with two women who were friends, and both were admitted to the same setting within a week of each other. The friends were enabled, upon request, to share a double room. They explained that mutual friends had gone to each of their homes and packed many of their belongings in suitcases.The Manager allowed them to keep these belongings now placed high up on top of cupboards. Every few months 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 pleasure in the ordinariness of daily life institutional environments? What is often heard is 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, nail cutting and polishing, both labelled incorrectly, ‘activities,’ and are a natural part of personal care tasks. Fundamental to most peoples’ lives is to ‘give and take.’ For many people life comes as far as the end of the bed, or lived within a bedroom. Gone are the coffees and cake with friends in a community coffee shop. Longer outings have to be organised around the size of vehicles and availability of drivers and staff. Risk-taking restrictions are an excuse that leaves the majority of people sitting in an armchair, sometimes next to a person with whom they have nothing in common. Then there is trying to make sense of two opposing television channels providing incoherent entertainment, a radio blaring out music in a corner of the same room, while some people are involved in childish games and colouring books. The clatter of crockery and chatter finalises the scene 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. The scenario is a recipe that leads to residents saying, ‘I’m useless, I can’t do anything; I can’t go to the shops to buy cards and clothes.’ When a staff member comes and, amid the heat and noise, says, ‘Are you alright, Mabel, would you like a drink?’ The person, awoken from a doze, mumbles and cannot hear. The staff member who continues the need to hydrate residents, turns to the next person and asks the same question. It leaves one to ponder on why available water and squash are placed out of reach on a communal table with a notice marked ‘Hydration Station.’ This is not a criticism of staff, most of whom are kind and compassionate. It is the system and procedures that allows little or no time for meaningful thoughtfulness and conversations that enable and support people to accomplish the ‘ordinary’ that most of us experience every day, and with no way in which to provide and support residents on a ‘one-to-one’ basis.

Often settings lack up-to-date literature and technology that could make daily life outward looking and enjoyable. Then there never seems time to deal with overwhelming grief that occurs for most people when leaving their home. This can be heart-breaking as staff usually have no real concept of what this grief can feel like, and it does not come within job descriptions. Most of us have leisure pursuits, 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 new clothes. I’d love a boiled egg, but staff do not know how to cook it. I used to enjoy going to the fridge for a ‘naughty’ late night snack . There is no spontaneity.’ Another resident said, ‘I’ve lost contact with friends. I’d like to write some letters and cards, talk on the phone, remember peoples’ birthdays, but I don’t know where my address book has been put and I can’t move around to find it. Maybe I’ve never had it here. Staff seldom have time to do these things; it’s not that they don’t want to help but there are so many calls on their time.’

As a nation we have become too bureaucratic, focused on form-filling, making notes and often caught in a cycle of paperwork most of which is unnecessary and reduces quality of life and leads to endless ‘emptiness.’ To experience the number and severity of losses many residents endure once they enter an institutional setting are enough to place people in the mental health system. All that most people can do is to keep their grief deeply hidden, so as to not upset their relatives or to show it and be labelled ‘uncommunicative,’ ‘angry and frustrated’ mostly translated into ‘challenging behaviour.’ Stop for a moment and think about the losses people may experience. These include the loss of identity, self-worth, confidence, home and personal belongings, death of a partner, unable to attend their funeral, or even not knowing they are dead. Missing and lacking any control, and with no hope of finding comfort in a beloved pet, access to favourite foods, lack of family and friends, maybe because of travel costs, time and health. Still there are residential and nursing settings far from community facilities and public transport, so a car is essential if a spouse or friend is still able or allowed to drive. Add to this the loss of access to finance and having to ask for money from a safe or another person, barriers to communication, for example a telephone, because a relative does not want the person getting in constant contact, or because of affordability, unable to write or send letters and cards.

Loss and the associated grief can be endless and with no help to manage it effectively.

This article assumes all residential and nursing settings are like those described. This is not true. Some settings will have some omissions and there remains the need for imaginative and meaningful conversations linked with mindfulness. It is a hope that people will challenge themselves as this might get owners, providers and commissioners of residential and nursing services talking with each other. One sector that is frequently isolated are ‘Community Co-ordinators’ usually untrained and unable to provide adequate , stimulating and timely support to large numbers of residents, many with severe memory loss and frustration, labelled ‘challenging behaviour.’ The question is, ‘Why do people develop challenging behaviour? One resident, stated to have severe dementia and who refused to leave their bed, was spoken with twice within nine months. They told me in answer to my question, ‘What would you like to be doing right now?’ Without hesitation the response was,

‘I’d like to live a little.’

Appreciation comes from the hundreds of conversations experienced with people in residential and nursing settings and this last example, I believe, says it all.

Ann Macfarlane OBE July 2020

With a special thanks from The Loss Project to Ann for this powerful and moving blog. Want to write about losses & grief in your context? Get in touch - we'd love to hear from you.

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