Dear Relative,
When a friend or relative receives the diagnosis that he or she has a life-threatening illness you will be affected too. You will undoubtedly feel sadness and concern for that person but you may be surprised to find that, at times, you might also experience fear, anger, resentment, or even self-pity along with unexpected tiredness or listlessness. These are normal human emotions in response to unwelcome health news and you are not alone if you have these feelings and thoughts – we all do at times. We tell you this so that you won’t judge yourself as a bad or uncaring friend if unwelcome feelings do arise from time to time. If, however, you continue to feel low or are concerned about how you feel you might decide to share your concerns with a friend or professional.
Medicine has advanced a long way, especially in recent decades. Not everyone is cured of serious illness, including cancer, although many are. But the good news is that many, many people can now choose to have excellent relief of the physical or psychological problems which might have made the last months of life very unpleasant even ten or twenty years ago.
None of us expect to live for ever – at least not in our current physical form. But I imagine that most of us would hope for a good death and we all have our own view of what that might be like. It should be possible nowadays for each of us to live the final days and weeks of our lives as we might hope – comfortable, physically and emotionally, and able to enjoy the family and friends we chose to have around us.
This is what palliative care is all about. Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers (IAHPC definition). Our objective at the Barbados Association of Palliative Care is to provide quality palliative care to all who require it.
What can I do to help my friend or relative?
Firstly, we would suggest that you can listen. Allow your friend or relative to talk and make it your job to listen attentively and to be silent. Try to allow your friend time to talk without interruptions. Obviously, this may matter most in the days and weeks just after a diagnosis but it will continue throughout the course of the illness.
Respecting the privacy of your relative or friend
You need to assume that he or she will need the same privacy, or more, than you would have afforded before the illness. If in doubt about how much input is wanted or needed, ask. It is important to allow the patient to be as independent as he or she can be. This might seem obvious but it is difficult for well-meaning friends to stand back and allow someone they love to struggle with a task that they could perhaps do in a brief moment. However, allowing your friend to be as independent as possible is one of your most important gifts to that person. It will apply if your loved one decides to see the doctor alone, to take the bus to town, to cook and to look after the house. And when they reach the point of needing more help, you can allow them their independence by putting them in charge of any decisions they are capable of making. Help, please do, but allow your loved one to be the boss; and that sometimes means respecting decisions you disagree with! Being needed is one of the things that protects humans from depression and mental illness (it’s one of the reasons why elderly people are so attached to their animals!). Being ill often robs us of that reassuring sense of being needed. It is very important to find ways to tackle this problem.
Having fun together
Remember good times, plan the days to come, perhaps sort through cuttings or family photographs to be left for the grandchildren, whatever seems appropriate to the circumstances.
Keeping company
It can be exhausting to be unwell. Sometimes a visit when your loved one sits quietly with you or watches television with you is just what you want. It’s not about what you say to your loved one, it’s about coming alongside to keep them company that means such a lot. And most of all listen to your instincts and then ask your loved one if you’ve got it right. Most of the time you will have!
Looking after yourself
It may seem unnecessary to say this but we say it nonetheless. All palliative care specialists recommend that carers take time for themselves. It stops burn-out for carers but it also improves the service to the patient! Plan to take little bursts of time off and, if possible, put them in your diary or kitchen calendar for the week; do it, it's important!
