Carer loneliness

This week we're delighted to have a guest blog written by Lynne Bardell from A Carer's Heart, a social enterprise which supports unpaid carers throughout their caring journey.


It doesn’t matter whether you are a carer or not, loneliness can affect us all. However, if you are or do become a carer, you can feel more isolated and lonelier as your lifestyle changes to adapt to this new and often additional, role. As a result, you might find you are withdrawing from your usual activities, such as seeing less of work colleagues, or friends and not being able to carry out normal hobbies and activities, where you would chat and interact with other, such as going to the gym.


Also, it can feel lonelier because you don’t have those shared experiences anymore, or even the anticipation of those experiences, that you might have had with your loved one or friends, such as family holidays or celebrating those special occasions.



One of the areas loneliness can stem from is not being able to relate to others on an intimate level and freely express your thoughts and feelings, without fear of rejection or being judged. Such as friends telling you ‘make it work for you’, or ‘just get someone in, if it’s that hard’, they do not mean to be insensitive, they just don’t understand. Often your social interactions are drastically reduced and perhaps the only time you spend away from the home and have the opportunity engage with someone other than your loved one, is going shopping or the GPs. Just having chats with people, about anything, but nothing to do with caring, can really rejuvenate and lift your spirits and these interactions can be missed very quickly.



Loneliness can be triggered by a particular event or may develop over time, without you necessarily even be aware of it, or the emotions that feeling lonely can bring. It is definitely possible to be lonely AND be in a relationship, such as a caring relationship, marriage or partnership. I know I have been lonelier while in a relationship than I have ever been on my own.


Even if you have a partner, friends and family, loneliness might make you feel that your relationships are now not meeting your needs, as there is no sense of connection or meaning, because your role in that relationship has changed. You might be in a room filled with people you know, and still have an overwhelming sense of loneliness. That sense of loneliness can make you feel unloved, unwanted, insecure, or abandoned by those who look up to and love. In fact, Austrian Psychotherapist, Albert Adler, proposed that it wasn’t possible to feel lonely unless there were other people present. So, according to Alder, if you were and had always been completely alone in the world, with no other human occupants, you wouldn’t have a sense of loneliness at all, because you would not any different! There are so many emotions, thoughts and feelings that go with loneliness. Let’s explore some of those together and think about why it’s important to recognise those thoughts and feelings as carers and what steps we can make to change the emotions of loneliness. 

To help illustrate this topic, I will be referring to some research studies, not the boring bit, of course and I have put all the references at the bottom of this post. As human beings, we are hardwired to have a sense of being needed. A study, published in 2015, found that the pressure to be happy and the social pressure not to show any negative emotions, such as with friends or other family members, can, in itself lead to a sense of loneliness. In another study, they reflected that if you do feel lonely, even though you might participate in activities with others, your sense of loneliness might still not be improved, and you might be more likely to want to do things on your own, which of course, in turn, may increase a sense of loneliness and isolation. The same study reported that the longer-term effects of loneliness can be associated with poor physical health and wellbeing. Another study published in 2019, outlined that there could be an increasing cognitive impairment connected to loneliness and there was a significant association with older age and cognitive impairment. Cognitive impairment is when a person has trouble remembering, learning new things, concentrating or making decisions that affect their everyday life. This is important to consider for older caregivers, perhaps caregivers looking after a partner or parent, as well as the longer-term impact for parents caring for a child. 



On a more positive note, the same study reflected that education served as a protective factor for cognitive function. So, we are going to get those little grey cells going in a while! Not being connected to others and having emotions associated with loneliness, can lead people to try and drown out and forget how they are feeling with drugs or alcohol. These in themselves can cause us to reject the company of others, because additive habits has additional emotions and feelings, such as regret for our actions.


Additionally, becoming reliant on substances to numb feelings of loneliness, can actually increase the chances of feeling stress, anxiety and becoming depressed. If we very isolated and alone, we might also misunderstand or misinterpret the attention of others, when we are trying to find meaning, when it might not actually be there. Perhaps this could be the attention of a healthcare professional, involved in the care of a loved one. Or a casual acquaintance showing compassion or empathy for us. Trying to find meaning in transit encounters, which is lacking in our day to day lives, is unlikely to result in our need to belong, being met. 

So, what steps can we take to reduce loneliness as carers?

Most importantly, feeling lonely or having sense of loneliness is normal. It is a natural response to circumstances and situations and most of us will feel lonely at some point in our lives. There is even a Loneliness Minister in the UK, and the UK government say they have plans to tackle loneliness. That is something I am going to explore further and make a bonus episode on, if it is ever happens, of course!


One quick and positive action we can take is to increase contact with individuals who already understand how we are feeling, such as joining a forum just for carers, such as Carers UK, Caregivers Action Community in the US, and Carer Gateway in Australia. There are also numerous forums and support groups covering specific illnesses and diseases such as dementia, autism, or MS. Community members in these dedicated forums, particularly as they are likely to be carers as well, will understand the more in-depth challenges that you and your loved one will face.


It is also worth making contact with organisations who specifically focus on supporting people who are feeling lonely, such as The Marmalade Trust (what a lovely name!); Let’s Talk Loneliness, and The Help Hub. If you can, try to use technology to keep in touch with friends and family, and perhaps set up regular virtual coffee chats. There are a variety of different online conferencing services that you can use such as Zoom, Skype, FaceTime, and I believe Facebook does one as well. So, try them out and see which one works best for you and your friends. 


Another useful resource are online groups, such as Elefriends. Elefriends is a supportive online community where you can be just yourself. The members know what it is like to struggle sometimes, and it is a safe place to listen, share and be heard. If you don’t have access to a device to access online groups and forums like this, sometimes charities can provide them, or your local library will have free sessions for you to use their computers. Quite often they will also run sessions on how to use them as well.

Combing the opportunity of meeting new, like-minded people and exercising those ‘little grey cells’, you could also think about something you would like to learn; perhaps a new hobby, or to take a course. Many courses are free, particularly during the pandemic, so search for the topic you are interested in and look for trustworthy resources. A couple I found include the University of the Third Age, for those for who are retired, and Open Learn from the Open University, who I believe are doing free courses at the moment. Last week, I did a post about planning for activities you would like to do for yourself, not as a carer, so worth having read of that post as well. Reading, libraries are a great resource for free books, and charity shops for good prices or listening to audiobooks, such as Kindle, or Audible, are other ways of escaping into a new world or learning something new.


Another opportunity is to connect with neighbours through online groups such as Next Door, where you can find out what people in your street or your local neighbourhood are doing, such as book clubs or local historical groups. Also, local activities are quite often being run through online communities such as Meetup. If you search for your area, you can see what activities are going on close to you and that are of interest. Or how about getting involved in local volunteering, not all voluntary has to be done in person at a specific location. Small charities are crying out for people with a wide range of experience to support them. It could be that you have skills that would be a perfect fit for a local charity or even a national charity. Think about the knowledge and experience you have, and how you can use that to help others. If you research in a local area, you will probably find there is a local volunteer and bureau, alternatively visit NCVO or Do-it.org for local and national opportunities.


Roles such as being a trustee or treasurer, are ones you won’t necessarily need to be there, but you could be of great help to them.  It might seem strange, but random acts of kindness have been shown to be useful in helping to promote positive emotions and moods and to help to negate negative moods and to help with satisfaction with life and fulfilment. So, if you get the chance, socially distanced, of course! Then this is another way to not only help someone else but feel connected with others.


This is the podcast episode relating to this post.


The most important thing to remember is, although it might feel like it, you are not alone. We are a family of carers and caregivers across the world. We don’t leave anyone behind. But you will need to take that first, tiny, step and reach out. Someone is there waiting to say ‘hello’. I will put a link to all the resources and the research that I’ve mentioned below. So please have a look, and perhaps do some more research if any of these things are of interest to you. 


Thank you so much for reading this post, I hope you have found it interesting and useful. If you have any questions or have a topic that you would like to chat about being covered, please contact me at enquiries@acarersheart.com. and please remember what a special thing it is that you do.



References and Resources

Resources :

The Marmalade Trust | Let’s Talk Loneliness | Elefriends | Meetup | Carers UK forum | The Help Hub | Next Door | NCVO | Do-it.org | University of the 3rd Age | Open Learn | Caregiver Action | AARP | Family Caregiver Alliance | Carer Gateway Australia | Support Groups, Australia | How to manage lockdown anxiety | Random Acts of Kindness


References:

  • Zhou, Z., Mao, F., Zhang, W., Towne, S. D., Jr, Wang, P., & Fang, Y. (2019). The Association Between Loneliness and Cognitive Impairment among Older Men and Women in China: A Nationwide Longitudinal Study. International journal of environmental research and public health16(16), 2877. https://doi.org/10.3390/ijerph16162877

  • Lara, E., Martín-María, N., De la Torre-Luque, A., Koyanagi, A., Vancampfort, D., Izquierdo, A., & Miret, M. (2019). Does loneliness contribute to mild cognitive impairment and dementia? A systematic review and meta-analysis of longitudinal studies. Ageing Research Reviews. doi:10.1016/j.arr.2019.03.002 

  • Bastian, B., Koval, P., Erbas, Y., Houben, M., Pe, M., & Kuppens, P. (2015). Sad and Alone: Social Expectancies for Experiencing Negative

  • Emotions Are Linked to Feelings of Loneliness. Social Psychological and Personality Science, 6(5), 496–503. https://doi.org/10.1177/1948550614568682

  • Queen, T. L., Stawski, R. S., Ryan, L. H., & Smith, J. (2014). Loneliness in a day: Activity engagement, time alone, and experienced emotions. Psychology and Aging, 29(2), 297–305. https://doi.org/10.1037/a0036889

  • Sermat, V. (1978). Sources of loneliness. Essence: Issues in the Study of Ageing, Dying, and Death, 2(4), 271–276.

  • Baumeister, R.F. & Leary, M.R. (1995). The need to belong: Desire for interpersonal attachments as a fundamental human motivation. Psychological Bulletin, 117, 497-529.

  • Alfred Alder’s theories of Individual Psychology and Alderian Therapy

  • Facebook
  • Twitter
  • Instagram

MARMALADE TRUST IS A REGISTERED CHARITY NO: 1174217 AND A COMPANY LIMITED BY GUARANTEE NO: 10879370