It takes courage to be honest about how you are feeling – with the person you are caring for, with your family and friends or even strangers. But it only takes one person to open up so that others around them feel comfortable, too. One honest conversation can change the entire experience of caring, for everyone involved. If no-one starts this conversation, it can be hard to overcome the barrier of silence that has been created, especially as the end nears.
The gift of caring
Giving your time to care for someone in the last stages of life is an incredibly special gift. Even so, caring is challenging: it is emotionally intensive; the work is often hard, tiring and unrelenting; family relationships, which are not always harmonious, can interfere; or there may be resentment or a reluctance to care for the person at all, especially if the decision was not made willingly or they have been caring for a long period of time.
There are many reasons why people find caring so difficult, but those who have done it tell us that the experience can also be enriching and fulfilling – so long as the people caring are well supported. More than that, caring has the power to transform people’s attitudes, relationships and lives.
Whether subtle or profound, this transformation can manifest in many ways and mean different things to different people: saying all that needs to be said; sharing special moments together; resolving past hurts or disagreements; or even experiencing the intimacy of caring for someone in the last stages of life.
Losing someone you know or love – either through natural causes or a life-limiting illness – is never going to be ‘easy’ or ‘good’. But with the right emotional and practical support around you, it is possible to have a better caring experience, where you can make the right decisions for the person you are caring for and for yourself.
How you may be feeling after a diagnosis
The days immediately following an initial diagnosis – or when it becomes clear that a person’s health is deteriorating due to disease or you’ve been told that there is no further treatment available – can be some of the toughest as you try to understand what lies ahead. Some people describe the news as having a ‘bomb go off’ in their lives and there’s a realisation that their world is changing in profound ways. It can be a time of upheaval, bewilderment, confusion and feeling out of control or dissociated from anything that is normal in your life.
Initially, you may be in shock or feel panicked, making it difficult to think clearly about the future and what will happen next to both you and the person who is entering the last stages of life. You may feel too overwhelmed to put your feelings into words or your thoughts into actions – some liken this to being ‘paralysed’ or ‘frozen’. Or you may go into denial and avoid facing the situation altogether. It is natural to experience a range of powerful and confronting emotions as you try to make sense of what the diagnosis means for you and your loved one. Some of the things you may be feeling include:
- Anger and disbelief that this is happening to you. Many people wonder, “Why me?”
- Confused by all the medical information and unprepared for the enormous task of caring for someone who has a life-limiting illness.
- Lonely and isolated, especially if you can’t talk about the difficulties and share the practical aspects of caring with someone else.
- Uncertain about how to have important conversations, not only with your loved one but also with others.
- Frightened by the prospect of losing someone you love and spending more time alone.
- Afraid – of the unknown, of mortality, of ‘failing’, of the future… Fears of all kinds are very common and can overwhelm you.
Accepting old age: the last stage of life
Growing old is a natural part of life that affects all of us. The fact that we expect it to happen doesn’t necessarily make it any easier to accept, prepare for or deal with. With an increasingly ageing population, the reality is that many of us will find ourselves caring for someone in the last stages of life due to natural causes – simply, frailty and old age. Caring for an elderly person whose health is declining, and who needs regular assistance, has different challenges than caring for someone with a life-limiting illness (their health may deteriorate gradually over a longer period of time, for example), but it’s still important to get help and support. See ‘Locating the services you need’.
The hardest, most rewarding work you’ll ever do
Caring for someone in the last stages of life is a highly emotional experience. It is also physically demanding and perhaps one of the hardest things you’ll ever do. You may face challenges that you have never encountered before; feel overwhelmed, anxious or ill equipped to manage their needs; struggle to adjust to the changes in your own life; or just be plain exhausted. You may even find it confronting facing your own mortality as you witness the declining health and death of the person.
While it’s true that caring for someone in the last stages of life is difficult on many levels, those who have done it – with the right information, preparation and support – say it was also one of the most rewarding and profound experiences of their lives. In our
Taking care of yourself
As the primary person doing the caring, you may feel others are relying on you to ‘be strong’ or ‘to cope’, so you may ignore your own feelings or neglect your own needs. This is very common, but it can have a harmful effect on your health and wellbeing. When you take the time to manage your emotional needs, you will have greater confidence and clarity and feel better able to care for someone else. The old saying that you can really only care for others if you care for yourself is especially true when you care for someone who is seriously ill or in the last stages of life.
Be sure to look after your basic needs (eat, bathe, rest, exercise), as well as do at least some of the things you enjoy. It’s important to set aside some time for yourself each day. Even if it’s for a short while, take your mind off things and do something that makes you feel better – whether that’s going for a walk, spending time with family or friends, listening to music, watching a movie, reading a book or doing some gardening. Do what feels right for you, not what others expect of you.
Taking the time to calm your mind and find a little peace can help you think more clearly and process the thoughts and feelings you might have from time to time. This will help build your resilience and maintain your own health and wellbeing while you focus on the tasks and responsibilities of caring.
The following relaxation techniques might help. They are just suggestions; you may have other ways of relaxing yourself. Think about what works for you and try to find the time and space to look after yourself.
- Take a walk, even a short one, each day. Walking can help lift your spirits and calm you down at the same time.
- Listen to your favourite music or choose something that suits your mood.
- Write down your thoughts. No-one needs to see what you have written; it is just for you.
- Practise mindfulness and meditation to relax and give you a greater sense of well being.
You are not alone
People who take on the responsibility of caring often do so with very little support from family, friends or professionals. You may instinctively feel that it’s your ‘job’, that it’s something you ‘must do’ for your loved one or that you ‘can’t let them down’. This could mean you end up shouldering most or all of the workload as you try to be everything and do everything for the person you are caring for. You may even feel conflicted about fulfilling your caring role and simply being the person you always have been to them – their spouse, parent, sibling, friend.
Think about how you can share this experience with other significant people in your life rather than protecting them from it and trying to do it all on your own. Give yourself permission to call on family and friends; even though they too have busy lives, they are usually keen to help. They know what you are doing is difficult and for many, it relieves their own sense of helplessness to be able to do something useful for you and the person you are caring for. Our Circle of Care model may assist you in coordinating the help of others.
As well as getting support from family, friends or others who are closely connected, you can seek out a psychologist or other counsellor, draw on community and health services or speak with a Violet guide.