PALLIATIVE CARE JOURNEY
Finding out that somebody you care about is going to die can be very difficult. Even if you have been expecting the news, having somebody actually speak it out loud can have a devastating impact. Life as a carer can be extremely rewarding but also both emotionally and physically exhausting, and there are very few of us who are able to get through such difficult times without the support of friends or family or from healthcare professionals who can be with us as we travel on this road. Carers can take comfort from knowing that others have travelled this road and that while each family and individual is unique your health care team can provide really useful information from their training and their experience of travelling with others.
Watching somebody that you love approach the end of life raises all sorts of questions. Are they suffering? What can I do to help? Can they still hear me? Are they starving? What is going to happen next? Having somebody who can help you find answers to these questions can bring real comfort as you do your best to care for your loved one. Even when your loved one appears to be sleeping or resting, they may still be able to hear you or be aware of your presence. Holding their hand, reading to them, talking about happier days, or playing their favourite music may be comforting for both of you.
If you are caring for your loved one at home, you should have the support of your GP and community nurse. Other health professionals may also provide additional supports, such as the social worker or the specialist community palliative care team. These staff will aim to respect the wishes of your loved one regarding their treatment and care but also to respect your needs throughout your caring work. They will continue to be there for you after your loved one has died, to provide practical information and ongoing emotional support.
Being a carer is both emotionally and physically exhausting and you may feel isolated. The healthcare team, friends or family can help you to manage at this difficult time. It may be useful to accept offers of help from family members and friends as they will be looking for ways to support you. At this time life can become very busy: health professionals, family members and friends may wish to meet with you and other demands such as work and routine family life may also take up much of your time. It is important to try to take time to care for yourself and to also spend quality time with your loved one.
Healthcare professionals will talk with you about any fears and anxieties you may have and provide advice and information about additional services that may be helpful for you. They will also provide contact details should anything concern you, day or night. If you have had earlier conversations with your loved one about their wishes, this can be helpful information to share.
How we die is as unique as how we live, but being aware of the physical changes that are likely to occur, as part of the normal processes of dying, can be particularly helpful. Whilst these changes may be upsetting for you to witness, they are often not as distressing for your loved one and are part of an almost universal sequence that happens as the body prepares to shut down and die.
In the last few days of life people will usually sleep more, and wakeful periods will become shorter. As people become weaker they often loose interest in food. It becomes more difficult to swallow food, drinks and medications safely. This is normal. At this stage people are not dying for lack of food or drink they are dying from their illness. If they are able, small sips of fluid or freshening of their mouth aids comfort.
Sometimes people become restlessness, or confused. Reassurance can often reduce such distress, but if doesn’t, it is important to ask your nurse or doctor to see if there are particular reasons for the restlessness that can be better managed.
As people approach the end of life the pattern of their breathing may change. Some people develop noisy breathing and listening to that sound can be hard. Your doctor and nurse may be able to help by repositioning the person or giving medicines to help. A person may also experience a loss of bowel and bladder control and whilst this may be distressing to witness it is not uncommon at this time.
If any symptoms are causing you distress or you feel that your loved one is uncomfortable please talk to the doctor or nurse who will be able to advise and support you as you provide this really special sort of care to your loved one.