The need to feel loved and valued – some tips for carers

At long last we can be optimistic about being able to visit loved ones in care or residential homes. It may have been a long time coming but let’s celebrate it and enjoy the possibilities it brings for those who have been looking forward to it for so long.

Meanwhile for many carers and those they care for, there is still no respite and I know that many are exhausted and resigned to the seemingly never-ending journey through this pandemic. Don’t forget that you need to keep looking after yourself in whatever ways are possible. Your physical and emotional wellbeing continue to be critical!

My focus is almost always on you as a carer but some of what I have been reading and thinking about recently has reminded me never to forget that somewhere deep inside, the person we are caring for continues to be the same person we knew and loved when they were well. I wish I had kept this at the forefront of my mind more often when I was looking after my mum!

What matters most to all of us as individuals? I would bet that feeling loved and valued and being able to maintain our dignity are near the top of most of our lists. So, the chances are that these things still matter to those we care for. Of course we love those we are looking after, it goes without saying. But is there a difference between being loved and feeling loved? Feeling loved goes beyond knowing it. We need both to know it and feel it and if we feel loved then our life is enhanced. We feel it through things like a loving touch, the warmth of the words which are spoken, the attention which is paid to our needs, emotional as well as physical.

What about feeling valued? I feel valued when I am listened to without any judgment, I feel valued when I am asked about my concerns, I also feel valued when I am trusted to make a choice even if it is only about what I want to wear or to eat. And I feel valued when I feel needed, when my opinion is asked for and my views are listened to.

And then there is dignity. Being treated with dignity means allowing me some control over my day, for example when I get up or go to bed; it means respecting my need occasionally for privacy; it means including me in conversations and speaking to me like an adult as if I matter.

It all sounds so easy when it is typed on a page. Perhaps not everything I have written about here is possible in your caring situation. Perhaps one or two aspects are possible sometimes if not all the time. What could you do slightly differently to help the one you care for to feel loved and valued?

However, these important things are so much more difficult when our resilience is low and we are feeling tired or fragile. When our identity has transformed into being a carer more than being a wife, husband, or son or daughter it can also be very challenging to remember and act in this way. Don’t be hard on yourself especially when you are doing your best in incredibly difficult circumstances. Do try out some of what I have described. Surprisingly it might not only be the one you care for who feels better but you might feel better too. 

The importance of hope and optimism for carers

At long last there seemed to be a few things to provide hope for some carers – the start of being able to visit loved ones who are in care homes, the possibility of protection as a result of a vaccine and maybe even the prospect of more opportunities to meet and spend time with family and friends or join in various activities which can all contribute to taking care of yourself and staying well. However, at the same time, the new variant of the Covid virus is incredibly frightening and has led to increased restrictions in all our lives.

Working with carers over many years has taught me how important hope can be and what a difference it makes to have a sense of a future. Many carers told me that they had completely lost their feeling of the future. Sometimes they described how the work we did together restored their ability to look forward with a degree of hope and positivity. What they talked of to me was not about a dissatisfaction with the present. For many, myself included while I was caring for my mum, there is much about a caring role which is incredibly satisfying. While it can be tough on both a physical and an emotional level, it can also feel like a privilege to be able to provide care for someone you love. It may lead to a different and very precious relationship. There may be the opportunity to make decisions in a way which is right for yourself and the person you care for and as a result, a feeling that you are managing life in the way which works best for you. And there might just be a little less anxiety and worry since you are not relying on others and hoping they will care in the way you would hope for.  

While we sometimes might think it is not possible to feel two types of emotion at the same time – feeling blessed to be able to care for someone and at the same time exhausted by it – it is possible and it does happen. One moment a feeling of joy and satisfaction and the next a cloud of weariness and frustration descends on us.  Or worse, we can feel resentful, irritated or even angry, quickly followed by guilt and remorse. All of which is so exhausting!

So, what is the connection with a sense of the future and hope? One way of looking at this might be that resilience is the connection, resilience being the ability to cope and bounce back from whatever life throws at us.

One of my projects with carers was to look at and attempt to measure resilience. Several models of resilience include a sense of purpose as a key component. During the course of this particular project, I worked with carers whose resilience seemed to be connected to something inside them – their core, their inner strength. Elements of that core were their sense of themselves, their sense of purpose and connection with something bigger than themselves. For some it was a religious belief, for others something spiritual, or on occasions it was something else difficult to name.  

When we are resilient, we have more ability to do that coping and bouncing back in the face of life’s challenges. But resilience can be changeable like the weather. One day we can cope with anything and everything which comes our way and yet on another day, the same challenges completely destabilise us. Of course, there are some people who seem naturally more resilient than others. But don’t despair, just because we don’t feel resilient at the moment, it doesn’t mean we can’t find a way to become a bit more resilient.  

Our sense of ourselves with an identity and a feeling of purpose in our lives, other than as a carer, is crucial. If we have a sense of ourselves then we can feel OK about paying attention to our own needs as well as the needs of those we care for. And paying attention to our own needs can only happen if we are aware of them and value ourselves enough to satisfy those needs. Many carers have told me that reminding themselves of the self they may have forgotten, the self that is an individual as well as a carer, enables them to take care of their own wellbeing and to connect with the future and to plan for it in a more positive way, with some hope and optimism.

Unfortunately planning can seem a fruitless occupation as a carer! Frequently it is necessary to completely reorganise what we had planned in order to deal with something unexpected. The unexpected can disrupt our plans for the coming weeks and months, the next day or sometimes even for just the next hour. Being forced to change our plans on its own can make us feel slightly unstable. But if the unexpected also results in us missing something we had been looking forward to – a coffee with a friend, a few moments to ourselves, a long-anticipated telephone call – it might really blow us off course. Remembering what makes us an individual as well as a carer, may contribute to our resilience so that we are more likely to be able to stay afloat and adjust our plans without being completely destabilised.

Last Christmas I wished you peace at the festive season and in the year ahead, through the ability to accept how things are and freedom from longing for what is not possible. A year ago, we had no idea that this message might have even more poignancy for Christmas 2020. There is so much more this year which is either not possible or carries major risks. I wish you peace, joy and safety this festive season and in the year ahead.    

Sustaining yourself through the pandemic

It has been a long absence on my part and I apologise. I know that there have been visitors to the healthy carer site and I am sorry that there has been nothing new to read. Although I have been thinking a lot about the impact for carers of everything that is happening, I’m afraid I haven’t felt able to commit anything to my blog.  

The various clips on TV and articles in the newspapers make my heart go out to those who cannot visit loved ones, those who yearn for their family to visit and those who are isolated at home caring for someone without the help of the agencies who would normally support them. How can anyone fail to be affected by Mary Fowler’s plea for visiting rules to be eased. At 104 years old her description of feeling as though she is in prison is heart-breaking. Indeed, what can I write which would make even the tiniest contribution during these incredibly difficult times?

All the tips and strategies I usually offer and which have been covered in previous blogs become incredibly challenging when our focus is on something as all-consuming as this pandemic. Even in what we might remember as “normal” times, carers have told me that paying attention to their own health and wellbeing while caring for someone can seem selfish and indulgent. In these strange times, finding the focus and motivation to overcome that sense of something being not right about looking after yourself, is so difficult.

Many people without the responsibilities and challenges that carers experience, have written about their lack of drive during lockdown and their inability to focus on anything for any length of time. I have also come across some writing about their loss of a sense of hope for the future. How much more difficult it is as a carer? When life is so restricted, and the restrictions are likely to continue for a considerable time, trying to change the way we do things or attempting to make a difference is challenging for everyone. Being a carer may mean that getting through each day can become another all-consuming focus, along with the pandemic.    

I felt along with many others a huge sense of hope in the summer, after the end of the lockdown which began at the end of March. A hope that life might return to some kind of normal, but our hopes have been dashed. We now realise that without a vaccine or effective treatment for the virus, we are likely to be under restrictions for months. Even worse, we may think things have improved and start to return to our former lives only to be restricted again as the virus takes over yet again.

So, it is crucial for carers to find a way to sustain themselves. However, the old adage, you can’t pour from an empty cup may not be the whole truth. While a car grinds to a halt without fuel, this principle just doesn’t always seem to hold up when it is applied to human beings. Lots of carers prove that it is possible to run for a surprisingly long time on a seemingly empty tank. However, I fear the damage that is being done. This damage may be physical or emotional and mental. Physical damage does often stop us in our tracks – we may become physically ill, we might hurt our backs or simply become absolutely exhausted. In contrast, damage to our emotional and mental wellbeing can be more insidious. We might not listen to what we know in our hearts because we believe we must be strong and we fear what will happen if we don’t keep going.  So we just find ways to carry on and deny what we are experiencing. Perhaps not sleeping, perhaps regretting aspects of our caring behaviours, or just sinking lower into a state of despair and lack of hope.

What can I offer which is realistic? Well, it might not be possible to take a large chunk of time to yourself but it might be reasonable to take several small periods of time each day to focus on something which recharges your batteries or even feeds your soul. That might be to read while having a coffee, it might be to sit in the garden (with a warm fleece on and a rug!) just feeling the fresh air, listening to the birds, smelling the garden, it might be to listen to some music. Spending 5 minutes a few times a day might just re-energise you a little. Planning the breaks ahead of time if you can might bring other benefits of adding some structure to your day.

Another important thing to do can be to acknowledge and accept how we feel and find a way to talk about it. That talking might be with friends or family or if there is concern about worrying them, there are confidential helplines. Sometimes when thoughts remain in our heads, they have a huge power over us. Just getting those thoughts out of our heads can take away their power and result in things feeling more manageable. Writing can also be a great alternative to talking since it can have much the same effect by getting things out of your head. No need to show what you write to anyone. The simple act of writing may be enough.

In the short term it may be tempting to keep a “lid” on what is in our heads for fear that things will become worse. Only you can decide, but my experience is that very often it is a huge relief and brings benefits to ease that lid off gently.

Stay safe and take care of yourselves as well as your loved ones.       

Thoughts for Carers Week

This week from Monday 8th June is Carers Week and as happens each year there is a huge online presence with pledges of support for carers from many organisations and individuals. There are also numerous activities around the country aimed at supporting carers. Like many others, I have pledged my support to Carers Week this year and I have committed to trying to reach as many carers as possible by continuing to write my blog.

This year Carers Week will be different because of COVID 19 but perhaps we can make it different in other and more positive ways.

I often wonder whether or not initiatives like Carers Week actually make a difference to the everyday life and experience of carers. Unfortunately, many of the carers I speak to are unaware of events like Carers Week and continue to feel invisible and undervalued.

It is of course a huge challenge to convert the commitment of organisations and the words written in strategies into something which makes a real difference on the ground. There is a massive gap to be bridged between the hopes and aspirations contained in plans and strategic documents and the lives of carers and the pressures they face day in, day out.

So, I have been wondering what I can write which will make a difference and help to bridge the gap.

All any of us can really do unless we are in very influential roles is to try to make our voices heard in whatever way we can. Sometimes we don’t speak up because we fear we will not be listened to or we are nervous about speaking to people we perceive to be much more important than us or we think the way we feel and what we want is not important enough.

This Carers Week and beyond I would like to urge us all to try to make our voices heard.

When things are not how we would like them to be – speak up! When what is written in plans does not turn into a reality – speak up! When simple things which would make a difference to us are not taken on board – speak up! When it feels like there is no point because no-one listens – keep speaking up!

It isn’t easy, speaking up is very hard work. We can often feel intimidated by those we would like to influence, we can sometimes feel as though we are being too demanding or that we are the only ones who think in a certain way or that what we need is just not possible. But if there is something that would make a difference to you, it is very likely that it would make a difference to other carers too. Be brave and confident and don’t be put off – keep speaking up wherever and whenever you can!

Take care and stay safe.

Uncertain and scary times

What a different world we are in even compared to the world of 3 or 4 weeks ago! It seems there is even more uncertainty to cope with now as the different countries in the UK take different approaches and other countries across the world are at different stages. We have so much information available to us and trying to sort through it and make sense of it is incredibly challenging. All most of us want is to stay safe, know that our loved ones are safe and feel we have some hope of returning to normal life at some point soon.

Time has become an odd and perplexing feature of life. Long days but weeks flying by. Each day being much the same means that the normal rhythm of the weeks has gone. Creating some structure can be really helpful. A structure for each day is sometimes provided for us by virtue of caring responsibilities but if that is not the case creating your own structure is worthwhile. What will the morning consist of, what would I like to do in the afternoon, what does the evening hold? And a structure for each week too – finding a way to make the days different so that they don’t all merge into one. For some people phoning a particular friend on the same day each week provides a shape to the week, for others it is a constraining routine. Find something that works for you to create some kind of structure.

The welcome easing of restrictions might be bringing a strange and unwelcome visitor to your thoughts and emotions. The feeling of safety which has been an unexpected benefit of lockdown is under threat. For many, life might have been feeling relatively safe – inside your home, able to control your environment with protection from the outside world. But that feeling of safety may have come at a cost to your own health and wellbeing. No rest or breaks and no easy way of sharing your emotions with others who might support yet you don’t want to worry.

For some sadly there has been much less feeling of security when loved ones are in a care home, in hospital or far way. The separation from loved ones, perhaps in a facility which is difficult to travel to, with a journey which feels unsafe, maybe on public transport is so tough. If you do make the journey, connection might only be through a window or at a distance. Perhaps you cannot manage to visit and you are using technology with all its limitations and no touch or even closeness. Missing the touch and presence of your loved ones, still feeling totally responsible for your own and another’s welfare without the occasional respite which can help to sustain you can be a huge emotional load to carry.  

 So, the prospect of easing of restrictions might bring very mixed emotions along with uncertainty about how things will work in practice.

During what we might call “normal” times, I have heard so many carers say that the safety of their loved ones is paramount. Many also realise that taking care of themselves is crucial if they are to be able to keep loved ones safe. How much more difficult that is and will probably continue to be in these “abnormal” times. We face what is being called a new normal and for carers that will continue to bring additional challenge to their lives.

Now more than ever the saying “you can’t change the wind but you can change your sails” is so important. The stress of seeking clarity when there is none, the need to know how long something is going to go on for, the seemingly incompatible wishes to keep yourself and your loved one safe while having some sort of break to recharge your batteries, the need to have some sense of the future – there is so much creating pressure. And so much of it feels unfair!

Take care and stay safe.