Caring for relatives

Introduction

People can find themselves in the role of carer for all sorts of different reasons. Some may be caring for elderly parents; others for disabled children, partners, other relatives or friends. No two carers will have identical circumstances which means that each experience will be different: the nature of the needs of the person being cared for, the extent of the support network around the carer and the availability of financial support and respite care are some of the factors which influence how the caring role is experienced.

Although some carers experience their caring role as a deeply fulfilling and worthwhile part of their lives; many will experience a range of difficulties. These can include anxiety, stress, depression, financial worries, loss of paid employment, limited or no time for self-care, and social isolation. Carers may also experience a range of emotions which can be challenging to acknowledge or address including anger, guilt and resentment (source: www.mind.org.uk).

For this reason, it is important to identify factors which may help carers to develop resilience in the face of challenging life circumstances. Although there is presently limited research into the benefits of mindfulness for carers, anecdotal reports from carers who have an established mindfulness practice suggest that it can be very beneficial. This is illustrated by the six carer stories below.

Caring for an autistic child. Janice Yelland-Sutcliffe

I introduced mindfulness practice to my daughter – through just simple breathing exercises and discussion.  She chose to explore this further by herself as she is on the Autistic Spectrum and found that when she regularly practices she is less anxious, sleeps better and is more able to focus on her writing and the tasks that she will often avoid.   She has adapted the practice to include visualisation as she can become overloaded with physical sensations being hypersensitive.

However there are times when she becomes stressed or anxious I will say ‘Breathe – in and out …… you are safe …… in and out ……. I am here …. breathe in and …..out …….. let’s sit  ……… in and out ……… I am here ………….”  Sometimes she needs to walk and walk or dance and if it looks as if she needs this I need to be mindful of this ….. so space is given and then on her return she often needs just holding and then my breathing helps her to breathe and without words we breathe together.

It is so different when it is your child it is not physically isolating – but connecting mindfully and gently then when appropriate releasing.

Sylvia Clare - Peaceful Garden of the Heart

“Having a mindfulness practice has helped me as a carer in so many ways.  It reminds me to begin again in every moment when I feel overwhelmed by the enormity of the task of caring for the people involved.  I know that I am only responsible for what I can offer and not for how someone takes it, that doing my best is all that I need to do.  It tells me to let go of all judgements of myself and of those I care for, to remember that we are all doing our best here and that is all anyone can ever do.  I try to let go of all expectations and enable myself to be more fully in the moment so that I do not extrapolate a difficult or challenging episode into more than it really is. 

Having a mindfulness practice means that I always have a default position for myself to return to when I am too depleted or overwhelmed, by knowing that I have a refuge elsewhere which does not depend on anybody or anything but my decision to return to it.  I feel gratitude for my practice on a daily basis, and for all the wonderful things in my life that I can experience more fully thanks to the practice so that the dark days do not overwhelm and engulf me completely.

In terms of my own mindfulness practice, I use practical exercises which enable me to let go of tension and anxiety building up in my own body.  I repeat gathas (mindfulness verses) such as ‘this breath this wonderful moment’ when I feel exhausted and drained, and I enjoy the moments of relief like when I lie down at night and feel my whole body letting go, the bliss of a moments rest.  I try to use each breath as a reminder of how lucky we are to have these people in our lives.  These practices help me to have a life filled with joy in spite of the difficulties that I face regularly.”

Caring for my disabled daughter. K Bryant:

“My mindfulness practice helps me to be present with caring for my disabled daughter even when faced with challenging situations. I have worried a lot about the future and what it holds for her but as my practice deepens it strengthens my presence in the moment and enables me to see that if I waste time imagining what will happen in the future I actually miss opportunities to ‘be’ with my daughter right now and share our experience together.
By practising mindfulness I enrich my life by connecting with the everyday moments that can easily get missed. I do not want to look back at the end of this human experience and realise I have missed precious moments with my family, by chasing around in ‘doing’ mode. Mindfulness gives a strong sense of clarity and solidness within which aids good decision making and brings an ease of flow to life.
Mindfulness helps me to more quickly recognise when I am feeling anger (for example at the situation she is in, at the team of people that were involved in her brain damage during her birth, at myself for not understanding her, at anyone else around at the time who doesn’t understand her either). By bringing my attention back to myself and my anchor breath I see all this playing out in my mind and realise that none of this is real, no one set out intentionally to cause us suffering, that they also are suffering because of what happened, we are all connected and all suffer.
With this insight I have already calmed down enabling me to deal calmly with the situation. These moments happen more spontaneously now, I don’t have to go too far into the spiral without mindfulness bringing me back to the now.
Caring for someone has actually been one of the greatest catalysts for change and deepening my practice of mindfulness so in this way it has been an extremely important part of my development. I believe my daughter is my biggest teacher and although sometimes it can seem like the ‘stuff’ going on in life is hindering your practice, this ‘stuff’ washes through our lives to cleanse and aid movement and growth.
The challenges are all moments of growth and learning, so although at the time they can be interpreted as a terrible, difficult or even devastating situations, if we can manage to ride with them, stay present, without getting caught up in the drama we can actually see that nothing remains the same, there are always peaks and troughs and that actually by endeavouring to stay as present as you can, making good decisions is possible.”

Caring for the older generation. Compassionate Peace of the Heart

“I became a Buddhist practitioner before I began caring for my birth mother, adopted mother and stepfather so I was very fortunate to have the stability of a practice with me through these times.
My birth mother had a heart condition which deteriorated gradually. I still remember cutting my birth mother’s toe nails, I had never thought I could do that for someone, but I did it as I learned through my Buddhist practice that we are all of the same nature, in letting go of our anxieties and fears we can function with such great compassion. Mum died shortly after a risky heart operation. Mindfulness of breathing helped so much in the few days between the operation and her death, as some of the treatment she was receiving was distressing for her and anyone supporting her, all we could do was breathe and stay calm and focused.
When my stepfather was dying, I read to him a great deal, mostly Buddhist text. I sat and focused on my breath for long periods of time. I chatted to him reminding him of happy times. Mindfulness practice kept me calm, peaceful and able to support him and my step brother.
Caring for my adopted mum who had Alzheimer’s could be very challenging as she was very physically aggressive towards us. I was OK only because I had a stable practice, I knew how to take refuge, I knew how to breathe, to let go, not to lose myself in emotion. I felt so blessed to be with mum at the time of her death. I felt that it was OK, this is the natural way of things, the best I could do was to stay peaceful and solid and remind mum of joyous things.
I feel blessed to have spent time with loved ones at such important times in their lives, that’s not to say it wasn’t upsetting and difficult and very draining at times. During these times it was very supportive to attend Sangha and it helped immensely to have friends to confide in and advise me. During my time with relatives in hospital I should have loved the support of a Buddhist chaplain, that is why I subsequently became a chaplain at a local hospice.
Mindfulness has also helped me as a parent. Recently, as an Aspirant (someone who wishes to join the Order of Interbeing) I have been looking at the fourteen mindfulness trainings and have been reading, contemplating and practising with loving communication and deep listening. This has helped a great deal in my relationship with one of my daughters as I have learned to be still and truly listen to her when she is ‘ranting’ at me. Before I would challenge her if I thought she was mistaken and we would end up having a huge row. She really appreciates if I listen and tends to calm down in her own time and I am pleasantly surprised that after calming she then will sit and talk. This practise has certainly changed our relationship.

I am also learning to trust my son, to let go. When I feel anxious because I think he is isolated or unhappy (as he does not communicate feelings) I now breathe, remember we ‘inter are’ and hold the thought of him at my heart with love.”

Caring for a mother with dementia. Susie Mackenzie - Joyful Smile of the Heart

I used my mindfulness practice when with my mother over nearly ten years of vascular dementia and gradual decline. Her increasing physical and mental disability was challenging for both her and me. She might say something odd, or ask about someone who was already dead, or be in an angry frame of mind for no apparent reason. At these times I learned to breathe and be in the moment, accepting what was happening as it happened and making a conscious decision not to respond. I gradually learned not to respond with either a question or a remark that might increase anxiety or confusion, going more for a response of what I could see or hear: for example ‘can you hear a black bird in the bushes?’ or ‘what a lovely scarf, it really suits you.’ In her last weeks I sat with her: just breathing with her, holding a hand and singing familiar songs.

In some ways my experience of caring for someone deepened my mindfulness practice. My mother was a bit like a mindfulness bell: she had amazing ability to bring me into the present moment! Now that I look back on those years I can see that I learned a lot about acceptance, about patience, about letting go and about trust. Being a carer can also present challenges to someone trying to sustain a mindfulness practice: there is the challenge of trying to find time to set aside for formal practice as well as the everyday challenges of listening, accepting, dealing with difficulty, coping with exhaustion and stress, and in my case, a lot of anger.

I think it is important that carers are reassured that no matter how bad things get there are always things you can do to help, and having a mindfulness practice is one of them. Cares should remember the importance of looking after yourself and self-compassion. Performing Loving-kindness Meditation (Metta) for both yourself and others can be very helpful’.

Practising self-compassion in my parenting role. Shining Dedication of the Heart

“I first came to mindfulness when my mother died. I cared for her for 17 years, and mindfulness helped me to deal with grieving for her. I had a breakthrough experience on a retreat, in relation to her, which has stayed with me. 

Mindfulness has also helped me to practise self-compassion in my parenting role with a child who had needs to be cared for: it has really helped me not to catastrophise as much as I might. When the moments of dispute and anger happen, I try to practice mindfulness of breathing. Mindfulness of my mental pain helps me to mother myself as I am alone and without support and to overcome depression. 

The gift of being close to those suffering, and the awareness of suffering that comes with caring has helped me to practice with more intensity in terms of staying with the pain and not escaping.  Being with the person in their needs kept me grounded much more in the here and now. Being with my own sacrifice in terms of time and limitations leads me to appreciate all the conditions for happiness that I have in my life and to experience greater joy and appreciation of the little things in life and a lot of what we take for granted.

The opportunity to be part of a Sangha has been invaluable in helping me know how to care for my loved ones at the most difficult times, and the mindfulness trainings have been an unswerving guiding light whenever I felt lost.  Attending the family retreats in Plum Village has been invaluable as my loved ones were nurtured by the sangha as I was, in our own ways, and it was a sense of respite and relief for me due to the strength in numbers and the intense joyousness of sharing. 

It is not always easy to sustain your mindfulness practice as a carer: sometimes when the going gets very tough I get angry and upset and my practice stops.  However, although on the day-to-day level there can be big variations in my practice commitment, it’s definitely a permanent anchor in my life.  I don’t know what I would do without my faith.”

Caring for my two children who have autism and severe learning disabilities. Lauran - Whole Mountain of the Heart.

“Having a mindfulness practice has been immensely helpful in my role of caring for my two children who have autism and severe learning disabilities.  I must first be honest though and say that it is not always easy to sustain a mindfulness practice with a caring role: I cannot currently attend my local Sangha (which I love) because of caring responsibilities; I cannot always succeed in my aim of rising at 6a.m. for an hour of mindfulness if I have been kept awake all night by the needs of the children; and our house is frequently full of noise, drama and mess which is not conducive to formal meditation. 

I do usually manage to go on a short retreat with the Community of Interbeing once a year but this requires months of planning in terms of the logistics of how the children will be cared for whilst I am away.  It is important that we are aware of these types of challenge that some of our fellow Sangha members may face.

Having said that, I do manage to maintain my mindfulness practice as best I can even when extended periods of quiet, formal practice are not feasible.  I read books on mindfulness by Thich Nhat Hanh and other authors; I take short moments to stop and breathe mindfully; I try to remember to infuse daily caring tasks with mindfulness; I use video and MP3 guided meditations available online.  Mindfulness has helped me beyond measure with the challenges of being a carer.  I do a body scan meditation as often as I can because that has been immensely helpful in learning to identify and release the tension I store in my body.  I also do lovingkindness meditations and include in them the professionals involved in my children’s care; which helps me to (sometimes!) maintain a mind of compassion towards them even when anger arises at the insufficiency of provision for disabled people and their carers.  

I have learned to recognise my tendency to dwell excessively in the future by worrying excessively about how my children will fare when they are dependent on adult social care; and to try to balance a measured amount of forward planning with enjoyment of the present moment.  This emphasis on the present moment has made me aware that although my children have some very difficult and challenging times in life, they also enjoy many moments of pure joy; and this in turn makes me more positive and optimistic about their quality of life.  It also makes me more aware that although I may not currently have the freedom to do some of the bigger things in life that would bring me pleasure (I have never-ending wanderlust!) there are so many small things in life that can bring pleasure if we only bring enough attention to them: a warm cup of coffee, a good book, a cosy bed, a beautiful sunset, some relaxing classical music. 

My favourite quotation from Thich Nhat Hanh has always been ‘don’t ignore your suffering, but don’t forget to enjoy the wonders of life’.  That quotation really encapsulates my approach to combining mindfulness with caring.“

Books on mindfulness recommended by carers, for carers:

Bernhard T (2010) How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.  Wisdom Publications.
Halliwell E (2016) Into the Heart of Mindfulness: Finding a Way of Well-Being.  Piatkus.

Hanh TH (2014) No Mud, No Lotus: The Art of Transforming Suffering.  Parallax Press.

Hanh TN, Kohn SC (2006) True love: a practice for awakening the heart. Shambhala Publications.

Napthali S (2003) Buddhism for Mothers: A Calm Approach to Caring for Yourself and Your Children.  Allen & Unwin.

Rezek C (2015) Mindfulness for Carers: How to Manage the Demands of Caregiving While Finding a Place for Yourself.  Jessica Kingsley Publishers.

Schneider G, Hanh TN (2009) Ten Breaths to Happiness: Touching Life in its Fullness.  Parallax Press.

Online Resources and Apps

Self-compassion meditations by Dr Kristen Neff: http://self-compassion.org/category/exercises/

If you cannot physically attend a Sangha because of your caring responsibilities, you can find an online Sangha in the Plum Village tradition here: http://plumline.org/

YouTube is an amazing resource to find Dharma talks from Plum Village and elsewhere and many guided meditations.  Here is a 45 minute talk on ‘Compassionate Caregiving’ by Buddhist meditation teacher Tara Brach https://www.youtube.com/watch?v=zLCQyZCqZ5c

Happy Feed is an Apple (iOS) App which allows you to quickly record three good things about your day (you can use photos instead of typing if required).  https://www.happyfeed.co/ It is not available on Android but there are Android equivalents.

The Plum Village Website has a list of Apps which can support a mindfulness practice: https://plumvillage.org/mindfulness-practice/mindfulness-software/

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