In 2014 we invited my husband’s aunt to live full time in our home. This is the story of what happened next.
At the time that she moved in, Tina was frail, but still able to walk unassisted and care for herself to some degree. She now has full macular degeneration and is legally registered as blind. She is also very hard of hearing and refuses to wear a hearing aid. Last year she fell and broke her hip and now needs help to dress, go to the bathroom and get into and out of bed. She is house-bound. Like the rest of us, Tina is a complex human being, sometimes funny, sometimes stubborn, sometimes insightful and sometimes downright frustrating. She is not a fairy-tale, sweet little old lady, and we are not saints who selflessly took her. Few people actively choose to become full time carers, rather it is a reaction to a set of circumstances. I became a carer to my husband’s aunt because it felt like the right thing to do. It was consistent with our family values and it spoke to something deeper about how I regard society and the ‘throw-away’ disposable culture we live with these days.
While I expected that looking after Tina would be in her long term best interests, bringing an elderly woman home and getting down into the weeds of her daily care has challenged me enormously and helped me understand myself in ways that I hadn’t anticipated (not always showing me a side of myself that I like). I am far more aware now of the sense of rush that we have hard-wired into modern life, as my impatience to get to the next thing is challenged in so many ways, on so many levels.
Here is what I have learnt (so far) through my role as a primary care giver to an elderly person living in my home:
1) Slow down and let go
Being a carer is teaching me the value of slower. When the person you are caring for cannot hear well, to the extent that you must repeat everything you say several times, you learn to say things more simply, slowly and as often as required. Frail people need slow movement and gentle touch as they wobble from bed to chair and bathroom and back. I feel my irritation rising on far too many occasions and I am learning to breath and let go the rush and haste to get to the next task (or out of the room).
At first (and sometimes still) this forced slower-ness of things increased my frustration and led to extreme irritation. I would swallow it because it wasn’t fair to take that out on a frail and dependent old lady, but it would end up erupting all over the rest of my day and life. I started practicing mindfulness, letting go and acceptance, and try devoting my thoughts to peaceful loving-kindness. This is not entering some ‘zen-like’ state but a very practical way of using breathing techniques to physically calm down. It can be as simple as taking a slow deep breath (or a few breaths) when feeling overwhelmed. This helps me keep a sense of perspective and physically changes my anxious or stressful frame of mind. Something almost magical happens when we breath deeply and our physiology shifts our psychology – a primal mind-body connection. Yoga is my weekly treat, therapy and balm.
Practising gratitude is another daily activity that helps to remind us that our lives are more than the immediate challenge in front of us. We all have much to be grateful for whatever the circumstances we find ourselves in. I needed to reconnect with the many wonderful aspects of my life that seemed to be getting lost in the fog of the myriad small irritations and bigger frustrations that are a part of caring for someone. Doing this practice for just a few minutes morning and evening helps me to remember that I exist outside of the constraints of my role as a career as well. These can be big things (my home) or small (the fresh buds of spring daffodils or a tune on the radio that lifts my spirit).
I also direct positive thoughts and feelings at situations and people (those I care about as well as those who annoy me). I use a simple mantra to generate a feeling of warmth towards myself and others by mentally sending goodwill, kindness and warmth through silently repeating a series of ‘mantras’ or sentences. It’s a deliberate practice to soften the mind and heart, opening oneself to deeper levels of the feeling of kindness. This is a tried and tested technique for cultivating kindness, by focusing on positive emotions instead of dwelling on the negative thoughts and feelings we have. We become what we are thinking. The mantra’s I use can be found here.
All of these techniques are helping me to feel calmer and less frustrated. By slowing down through deliberate decisions to do so, I feel more in control of my feelings, thoughts and actions. In my career there have been so many important times I could have been more effective if I had known how to control my frustration or chosen to be more patient with colleagues. Instead of reacting to people in haste, a slower response would have given me time to consider what else might be going on in their lives and helped me direct kindness rather than frustration. I allowed commuter frustration to develop into a low-grade simmering stress in my life, increasing my risk of getting sick. Instead of pushing along with the crowd and feeling aggrieved by impatient commuters shoving past me or in front of me to be first on the train or down the escalators I could have smiled more and, using my breathing techniques, let them rush past, calmly moving into my day without the adrenalin-spiked angst that was my more frequent habit.
As a parent I so often let the morning rush make me impatient and abrupt. Getting dinner on the table at night in in my speedy efficiency (barking instructions and getting impatient if it took too long) meant I lost many valuable moments to get dinner on the table 10 minutes later but have precious time chatting to my family and bonding while we got there.
The lesson in all of this is, that if we slow down a bit, we find time to appreciate others and their needs better, which enables us to respond appropriately and reduces our stress levels.
2) Learn the language of kindness, not of achieving
Kindness has become the language that I am learning to speak... slowly. It’s easy to be kind when the recipient is vulnerable but cute or cuddly. Much harder when the recipient is being curmudgeonly and unreasonable and probably smells bad too.
So, when I feel that bubble of annoyance or repulsion rising in my throat and I know that the likely words that will come out will be cutting and brutal, I force myself to take a breath (or two or three). I focus on how difficult it is for Tina to be so dependent on me for everything and think about how I would feel if I was in her position. And then I try to say what would be comforting to her, instead of what I really think. Tina has irrational fears when my husband has to travel – I am very impatient with superstition and her irrational fears, but I have learnt that being irritated or dismissive only exacerbates her emotion neediness. Responding with kindness means simply being willing to acknowledge her fears. Often all we need is validation that we are feeling something (I don’t have to agree with her; or change her view).
The language of kindness is basically being where the other person is at without judgement. In the work-place this is such a powerful thing to be able to do. Good leaders and managers have mastered the art of validating those around them and moving people from where they are to higher places. Not through fear or belittling them - but through the language of kindness that meets others where they are and walking along-side them to a different place. We all know a few work-place bullies and aggressive co-workers but perhaps we haven’t noticed that our own language can be improved. It’s not about compromising the truth or reality. Its simply being willing to be empathetic about someone else’s position and formulate what we say and do from a position of validating their feelings before moving to the solution. Instead of getting defensive the next time someone offends you or criticises you, start by validating their feelings and then reframing your response with kindness instead of a put-down or clever sarcasm.
3) Know that you can be patient
When I have asked Tina if she would like some tea for the fourth time, or when I have listened to the same story many, many, many (too many!) times or when I have answered the same question several times in the last day, I often feeling my patience unravelling. This is when I STOP. Breathe deeply. Then I remind myself that Tina cannot help being needy and forgetful. Perhaps the repeated questioning is a call for attention – have I given her any focused time that day or have I simply been going through the motions of the basic physical care. I cannot always give attention to her at that moment, so I tell her that I am busy doing whatever it is and that I will have tea with her in half an hour or at a specific time. Then I make sure I do it. I try to think of something new to talk about from the news or something she has seen on TV. I try to find things I can ask her about or get her advice (do you like this top I am wearing, or which shoes should I wear to go here or there). Sometimes I simply have to make an excuse to go out of the room for a while to regather myself.
Being patient draws on the techniques I use to slow down, breath and practice loving-kindness. Sometimes I just repeat my little mantra silently in my head directing loving thoughts at Tina. Impatience is often a function of rushing and not having the time to slow down. I am learning that there is no harm in repeating the already stated answer or listening to the same story again and again. Boredom is not a terminal illness and won’t kill me. Listening gives the much-needed validation to someone else that they matter and they are valuable members of society. One of the difficult things for the elderly apart from loss of autonomy and independence is the lack of a sense of purpose or value.
As a busy working mother, I wish I had practiced this patience much more often with my children. Too often I allowed my boredom with their pursuits to close down opportunities for engaging. My hurried agenda left few opportunities for just being in the same room/place and letting conversation happen in an organic way – I always seemed to have conversations that were directed and focused and perhaps intrusive. Perhaps I would have known more about them and their challenging teenage years than I did if I had let time, spent somewhat idly, mellow our interactions.
4) Be truly cheerful
Cheerfulness with sincerity requires the extension of a whole new vocabulary. The language of the unspoken gesture or expression is often louder than the words we use. Even old people with macular degeneration, who are legally blind, can somehow see the worry/irritation on a face that doesn’t smile when the words are trying to pretend that it is. It is true that a person on the other end of a phone call can ‘hear’ your smile. And funnily enough, just smiling really can put you in a better mood.
If I am feeling a bit irritated before I go into Tina’s room, I try smiling for a few seconds first. I think of what has made me happy today (my gratitude practice gives me the inspiration). I repeat my loving-kindness mantra and then I go into the room and greet Tina with a bright cheerful voice. Yes, I have bad days, often nothing to do with what Tina needs, and I know it isn’t something she can process or understand. I don’t try to pretend everything is perfect, but I do try to have a positive attitude. By directing loving thoughts and gratitude I can communicate these in my touch.
If I am finding it hard to feel loving towards Tina I try to make time to giver her a back rub, a foot massage or do a manicure. The language of loving-kindness and good cheer is often communicated through touch. If I am stressed or hurried when I am helping Tina go to bed she will remark that my night-time hug is a little fierce. She always makes it a joke about how I might break her ribs, but the message is clear – she feels and hears what I am not even aware I am communicating. And when I change my body language my mind and disposition follow.
Amy Cuddy’s TedX talk about Power poses could hold the key here (see Amy Cuddy: Your Body Language Shapes Who You Are). The scientific proof that we can reduce cortisol levels in our bodies before stressful events by simply adopting a particular pose can easily be applied to developing a kind and cheerful vocabulary through gentle touch and smiling, which could shift our mind-set and our mood. Next time you must have a difficult conversation with your manager or colleague try smiling first (not sneering – you know the difference!) and see if that disarms them and you in ways you hadn’t anticipated and makes the conversation easier than you feared.
5) Put your ego down, and pick up your empathy
It takes a lot of effort to find things to talk about. But in so doing I am forced to step out of my ego and see others where they are, developing my empathy muscle. Empathy is so crucial to help me think about what it feels like for Tina. I am learning to be present, giving my full attention. Away from devices and other distractions I can begin to see this person fully. This helps me to consider what it’s like to be lost, feeling abandoned by her son and closest family, living here with me (no blood binding us) and her beloved nephew. Walking in her shoes, trying to have some sense of her fears and her shame at the loss of dignity that age is forcing upon her, reminds me of the extent of her need for me to be here, and for me to be reliable and gentle, steady and true.
Walking in another person’s shoes is solid wisdom, and so frequently said that I think we have lost the meaning of this phrase today. We need to recapture the essence of how we would feel if we were in a similar position. The trick is not just to imagine it but truly feel it. And not to extrapolate that YOU would be different/better at it, but truly care that this other person sees things the way they do and try to understand why. This is especially so if we think we might react differently to the circumstances than they are. In taking a little time to understand the why of behaviour we better position ourselves to respond with empathy.
Empathy can be a very powerful tool to changing behaviour in our fellow humans. Have you ever been really frustrated that no-one seems to care about recycling, or stopping the wide-spread use of plastic when there are viable alternatives? Perhaps the secret to getting action is to understand that few people are deliberately obtuse and don’t care about these issues. Maybe they have bigger problems that need validation first? Maybe they are not lazy but worried and overworked and we need to find ways to make it easier to access recycling bins or alternatives to plastic. It isn’t simply about educating – changing behaviour is about understanding deeper (sometime subconscious drivers) and you cannot do that without empathy.
6) Accept that you are not in complete control
Fundamentally, caring for my aunt has made me confront the lie that we all live with, that we are able to fully control our lives and our world.
I rail against the constraints imposed on my freedom to come and go as I pleased; I chafe against the impenetrability of an elderly mind, slowly shutting down, that can no longer follow logic or reason and holds onto superstition and irrational fears. Frustration bubbles, just below the surface, more often than I would like. All of this negativity impacts on me. It would be easy to allow that to frame my mind-set with a fatalistic depression. But we can choose how we respond to things, and so I practice this philosophy encapsulated by the Serenity Prayer: “God grant me the serenity to accept the things I cannot change; Courage to change the things I can; And wisdom to know the difference. Living one day at a time; Enjoying one moment at a time; Accepting hardships as the pathway to peace; Taking, this world as it is, not as I would have it” - adapted from the original by American Theologian Reinhold Niebuhr (1892–1971).
There are many things I cannot change about my circumstances – how can I graciously accept these without allowing that acceptance to blind me to those things that can be changed; either my mind-set or the fundamental circumstances. How can I become strong enough and develop the courage to make the changes I need to make? For me, it means starting with the easy wins and then using the process to build my confidence – each time I succeed at doing something difficult I feel stronger next time and I am motivated by my past success. So, I start with things that nurture that feed-back loop. Incrementally getting to the harder things. I think we fail when we start with doing the hardest tasks first and then we give up rather than risk repeated failure. So why not flip that around and start with something easier (more likely to succeed) and use the momentum of the early wins to drive us forward.
I think we are all buying into a narrative that what is happening in our world and the community around us are something beyond our control. Our perception of alienation from the wider environment is very sad and even dangerous. When we withdraw into self-imposed isolation, the needs of the environment and society within it become something apart form us. We no longer own the problem. It’s not our fault the oceans are awash with plastic, climate change is devastating poorer communities in developing countries and social care is in crisis. We have a sense of disconnection that means we cannot do anything about it either. None of which is true. We are integrally a part of the world, both the environment and the communities that make up society. True, some of the problems are bigger than we can address as individuals, but collectively our actions are either contributing to the problem or helping to solve the crisis. Individually, every choice we make adds up to the collective good (or otherwise). But to get there we must know that we are integrated connected and relevant. We must lose the apathy of powerlessness and embrace the empowerment of the courage to change the things we can.
The most important lesson of all that I am taking away from being a carer is that I CAN, be a better person, be more patient, make a difference. The secret is to START WHERE YOU ARE. Start with what you can do, where you are, when you are able. You don’t have to care for elderly people en-masse who you’ve never met. Maybe it starts with chatting to your elderly neighbour or offering to drive someone to the shops when they cannot or cooking a meal for them. We don’t have to care for all homeless people but maybe you can give food to the local food bank or volunteer one day at a homeless shelter. Then maybe you lobby your local super-market to re-use food-waste and get surplus to those who don’t have enough to eat.
We cannot get rid of the plastic in the ocean overnight, but you can make small changes to your own consumer behaviour, using re-usable cups, not using plastic straws, buying produce in loose form rather than packaged and then build up to lobbying businesses to reduce their plastic use.
Fundamentally however, broadening out our sense of what is our responsibility and what isn’t is the seed change we need to address so many of the big issues that we face as people and planet. When we narrowly define those that we are responsible for and to, we reduce the need to act on their behalf or in their interests.
In my journey as Tina’s primary carer, sometimes it feels as if my world has shrunk inwards to a tiny concentrated point. But when I consider all the ways this experience has changed me and opened my perspective on things, I realise that this contraction to a central point is in fact the epicentre of an explosion into a whole new world of discovery for me.
Perhaps for you it will be as simple as getting to know your neighbours, or as involved as becoming a governor at your local school. Maybe it will be encouraging your family to consume less, or building flexible working into your company. The more that we participate in each other’s lives, the more we connect to what makes us fundamentally human. And from that starting point, we may just be able to feel our planet’s beating heart too.