The Impact of Lockdown on Carers

The latest issue of Affinity’s Social Issues Bulletin is out now. It is free to download, as are all previous editions. One of the articles is by Roger Hitchings, looking at the serious effect of the UK’s lockdowns on those who care for others.

The problems of older people and the difficulties and trials in care homes have featured prominently in reports on the impact of Covid-19. The effect of the pandemic, and especially lockdown, on carers has, on the other hand, been almost forgotten. But to get a fair picture of what has happened in the world of care we need to consider both aspects.

Carers are those people who give the larger part of their time and energy to looking after people who cannot for a variety of reasons fully look after themselves. For some it is a full-time occupation. They may be related to the person with care needs, or they may be paid to undertake these tasks, but they are all vital to the well-being of people who know limitations due to age, mental condition, disability or intellectual and physical limitations.

The largest group of carers are those who look after someone living in their own home and who do not receive any financial payment for what they do. They are sometimes referred to as care-givers. It is estimated that there are over 6 million people who fit into this category. There is a second group of carers who also go into people’s own homes, but they are paid workers. They are sometimes referred to as social-care workers. They usually do very specific tasks in the homes they visit and for most of them they only stay for a fairly short time. The third group (also referred to as social-care workers) are the staff employed in Care and Nursing Homes, and other residential settings, who are not trained nurses. They are involved in providing all the personal care for the people who live in the Home, now referred to as ‘family members’. The pandemic and lockdown has had very different impacts on each of these groups of people.

Care-givers – a stressful situation

The majority of care-givers are either the spouse of the person cared for or a child (often a daughter) or a near relative. For most of these people their caring duties cover 24 hours every day. They watch for and seek to ameliorate the effects of the virus on the person they care for, which produces pressure and stress in them. Then there are also the personal effects of lockdown that the care-giver experiences in terms of fear, anxiety, loneliness and emotional stress. They may, of course, create a care-bubble with a relative or friend who acts as a support to both the care-giver and the person cared for.

A study by the University of Michigan[1] showed that symptoms of depression increase in care-givers of people with dementia, and other family members, over time. The study found a 27% increase within two years of the initial diagnosis and 33% over the next two years. Previous research had found that such depressive symptoms were associated with a 30% increased risk of falling. Similar impacts are seen in care-givers of people with disabilities and other cognitive and intellectual problems. All care-givers go through a process of grieving as they see their loved-one deteriorating. These normal aspects of care-giving are exacerbated by lockdown and the other implications of Coronavirus, as I will attempt to show.

To examine in a little more detail the impact of lockdown I will recount a case study of a couple known to me. This case is typical of the experience of many care-givers (if you can have typical cases in this highly individualised area of life). Similar stories could be repeated from personal experience of other situations involving various health issues. In the couple we are considering the wife is the care-giver, and the husband has dementia. They had spent nearly fifty years in full-time Christian service before retiring and becoming very active in their local church. Before the pandemic struck they were doing reasonably well and needed little support, and what they needed was more than given by the family (who lived nearby), and a caring and supportive church community. His dementia was easily managed, and it mainly showed itself in a very poor memory, inability to do some tasks in the house, especially handling their finances, and a tendency in conversation to repeat himself.

Lockdown brought about a loss of social interaction which the family and the church had previously provided. This had a corrosive effect on his mental condition. There was a period of returning to a degree of normality, which was not as great a benefit as it would be for most people. He struggled with the changes because he could not follow the reasoning for the release of the lockdown – his mind had fixated on a war scenario, and you do not relax your precautions until the enemy is defeated. The changes in arrangements worried him and left him feeling bemused and anxious. She recognised his anxieties and tried to comfort him but could not help him to accept things. This left her feeling worried about him and a little disappointed in herself.

The further lockdowns began to produce quite dramatic effects: His slow decline which had become noticeable during the first lockdown, now seemed to speed up. Most noticeably, he virtually stopped speaking, only rarely doing so to ask for things. A general apathy which he had always shown since his diagnosis now become very marked. She had to work hard to get him motivated to do anything, including going to meals and keeping himself clean and tidy. (Before the onset of dementia, he had always been very smart and was often described as dapper).

His confusion of mind also increased very rapidly. As lockdown began again he started to struggle with dressing himself, unable to think what he should do with his various items of clothing; for instance, he would try to put a jacket on his legs. As his self-confidence diminished his need for help increased considerably. She ended up doing almost everything for him. Her daughter who was in a care-bubble with them did what she could to support but then her son developed mild Covid symptoms and so for a couple of weeks she could not visit.

The effects of this decline in his condition and all the extra work his wife had to do has had serious repercussions for her. From being a very calm and measured person, she has become very agitated and anxious. Her sleep patterns have become very disturbed and she is also suffering with back and shoulder pain due to the physical demands. She is starting to show early signs of dementia herself.

Such outcomes are not uncommon for dementia care-givers. But what has happened has taken place in an unusually short time. She is now worried that soon she will be unable to care for him anymore; her daughter has a youngish family and her husband has a very demanding job. She would not be able to care for both her parents. It seems likely that before long they both may have to go into care.

Whilst this is quite a dramatic story it really is not that unusual. The social isolation and limitations created by lockdown can have such effects on care-givers to a lesser or greater extent depending on the individual, their personalities, the condition of the one being cared for, and so on. Thankfully, many care-givers and those for whom they care are able to cope well with lockdown, but for some the impacts may be serious.

This poses a challenge to churches that they need to be addressing now, or at least thinking about how they might respond should such challenges arise in their congregation. Each situation is different, and each church has different resources and capacities. It is not therefore practical to suggest what churches ought to do, as there is no one solution that will fit every situation. The issue is that churches should be aware of the possibilities of these problems and they should seek to be ready to act if it proves necessary.

Social-care workers – a study in frustration

Social-care workers face an altogether different situation. Rather than being with the person needing care for long periods of time, they have a number of people to care for, whom they will visit for quite short periods. When with the person being cared for the worker will have prescribed duties, and limited opportunities to engage in personal interaction. Nonetheless, many of them build strong and valuable relationships with those they visit. Many they visit live by themselves, often having significant handicaps and limitations, but their greatest problem is loneliness. The Coronavirus has magnified these problems and lockdown has intensified loneliness.

For social-care workers the problems they encounter in lockdown relate to extra limitations on relationships (e.g. PPE and time taken up with taking essential precautions), fear and anxiety in those being visited, how to respond to the desire to simply talk, and their own anxieties and fears about the virus. They travel from house to house; the people they visit vary in their hygiene and safe behaviour. So more time has to be taken in seeking to keep themselves safe, which may mean less time working with and relating to those they are visiting. That can be very frustrating.

All the precautions, and the PPE in particular, create a different atmosphere between themselves and the ones being cared for. That can lead to people expressing unhappiness about the visit. Many of these workers are very highly motivated and the frustrations become very painful. Those they visit need considerable help and it is not possible to do everything that may be needed. Again, that is the situation under normal circumstance, but under Covid it is made worse. The levels of fear and anxiety amongst those they visit is high, and understandably so, and there is little the workers can do to alleviate this. I have heard of workers who agree with some whom they visit to leave certain tasks undone so that they can take time to talk. That is an unsatisfactory though understandable decision, and creates further frustration.

Of course, the decline of people due to the impact of coronavirus, happens just as it does with those who live with a spouse or family member. Being unable to do anything to address these developments is most difficult to handle. The length of the visit is partly determined by the number of other people there are to be visited. Often the worker will just work longer hours, for which they would not be paid, to try to give some encouragement and support to lonely and frightened people.

Personal fears are often just subdued so that the caring process can continue. But the fears still exist. If someone being visited is taken ill a whole range of emotions are stirred; if someone dies from Covid feelings of regret, guilt, anger and deep sorrow may follow. The levels of support and counselling from the organisations that employ them vary widely. Christian workers may find help from their church. But if services have been suspended, and the rest of life is busy, getting help can become more difficult. There is then a tendency to just battle on and try to ignore the feelings of sorrow and frustration, and the longing to do more. But that can be emotionally damaging. Part of the reason for writing this article is to alert pastors and church leaders to the needs of these folks, whose work is often devalued and misunderstood.

Care home staff – stretched to the limit?

A great deal has rightly been said about the pressures, demands and difficulties facing hospital-based staff. The pandemic has taken a huge toll on those valiant health service workers. Not so much attention has been given to those who work in care homes across the country. That is not surprising because they tend not to be engaged on the frontline of the battle against Covid. But they are very deeply involved in caring for people badly affected by the virus. The sad fact is that they are used to being overlooked or undervalued; generally within our society and in normal times these people are not highly appreciated, nor are they well paid. Neither were they regarded as essential workers, and that particular issue was a problem at the beginning of the pandemic. It is, however, generally accepted that working in a care home is hard and demanding. This is one of the reasons that recruiting staff is difficult, and there is a huge number of unfilled vacancies. Having said this, it is important to qualify the negatives by saying that this area of work can be amongst the most enriching and satisfying.

The effects of the lockdown on those who work in care homes can be very complex and distressing. At the heart of quality caring is the building of relationships and commitment to those cared for. Many care homes base their structures on these goals. So individual workers, sometimes referred as colleagues, relate to specific ‘family members’, that is residents, and those relationships enable a ‘family atmosphere’ to be developed. In doing so the home will rely on a variety of people – relatives who visit regularly, volunteers who visit and chat or provide activities to keep family members stimulated, and local groups and schools who provide forms of entertainment. Other health and social work professionals usually visit to bring encouragement and information for the staff; Christian churches provide services and acts of worship. All this stops under lockdown, bringing detrimental effects.

The loss of visits, in particular, has a seriously distressing effect on residents. It is at this point that the staff involved in providing personal care face a great challenge. They cannot replace family and friends, but they can provide friendship and comfort. It is amazing to see how they do this. Nonetheless, there is an inevitable decline in the mind-set and well-being of many residents. It is unfortunate that the media coverage of this issue has failed to acknowledge the inevitability of this loss, and the hard work done by staff to compensate for it.

Precautions and procedures such as PPE and social distancing all affect the atmosphere of the home. The decline in some of the residents’ physical and mental health is exacerbated. Again, we need to note the extra effort staff make to compensate for these losses.

In addition to these changes there is also the impact of the virus itself on people. Residents are taken ill and some, tragically, die. The reality of the huge numbers involved has been well publicised. Colleagues also become ill with the virus and are unable to work, leaving the home short-staffed.

So what about the effect on carers of these challenging changes within the care home?

·       Increased workload to compensate for the losses we have noted.

·       Increased workload due to staff absences and the problems of temporary staff.

·       Distress and concern over the deterioration in residents’ wellbeing.

·       Coping with residents’ fear as they see media reports about the pandemic.

·       Their grief when residents die because a close relationship has been broken.

·       Comforting distressed colleagues because of the death of residents.

·       Comforting distressed residents who have lost friends to the virus. Remember, bringing in outside counsellors is not possible and Zoom is not a good medium for comforting.

·       Sometimes if there are several deaths then grief is multiplied.

·       Regrets when they reflect on their own response to specific situations. Can I cope if things go on unchanged for too long?

·       Fears and anxiety about the future, both personally and in respect of work.

·       Personal concerns and anxieties due to the everyday situations these staff face in their lives outside the home.

It is appropriate to mention that the increase in deaths within care homes creates vacancies which cannot quickly and easily be filled. There are also extra costs with purchasing protective clothing, bringing in temporary staff because of staff vacancies, and other items that need to be provided. Thus, for some care homes, and especially those run by charities who cannot easily fund-raise at the moment, this all poses major financing problems as their financial viability is threatened:

Care UK, which has more than 8,000 beds across 121 care homes, said the virus has had a “significant” impact on profitability and cash flow, amid higher death rates, and the cost of buying protective clothing for staff and patients.[2]

This substantial list of impacts gives a picture of the challenges and difficulties that carers in care homes have to cope with as they seek to fulfil their caring duties. For Christian people working in this area there are many biblical truths to hold onto and to be strengthened by. Again, the fact has to be faced that many churches do not recognise these things and so do not offer the support that they might wish to, were they better informed. This article therefore seeks to raise the issues, with the prayer that pastors and church leaders will prepare themselves to respond to these matters should they affect someone in their congregation.

Roger Hitchings retired in 2011 from the pastorate of a small church in the East Midlands after 15 years of ministry. Previously he worked for 23 years in the field of social welfare with a particular emphasis on older people, and continues with that area of interest through writing and speaking.

 

(This article was originally published in the Affinity Social Issues Bulletin for February 2021. The whole edition can be found at www.affinity.org.uk)

[1] See http://www.pilgrimsfriend.org.uk/blog/new-study-shows-depression-increases-over-time-in-dementia-caregivers
[2] https://www.telegraph.co.uk/business/2020/10/10/care-uk-fearful-future-may-hold/