Caring for a parent with a terminal illness

If you are caring for someone who has been told they may not get better, you may have already heard of the term end of life, or palliative care.

This type of care focuses on helping people to maintain the best possible quality of life. End of life care includes a variety of treatments for physical symptoms.

Palliative care aims to prevent and alleviate the symptoms of illness for people when curative treatment is no longer possible.

Care should also address the wide emotional, social and practical needs of people as they near the end of their life. Such care can be delivered in hospitals and hospices, via community services, or at home. In theory, home or community-based end of life care should result both in more people being able to die at home, and in reduced demand for unplanned hospital care.

Support also extends to family and friends who may have concerns about the person and their illness. Palliative care can be given at the same time as other treatments, such as chemotherapy or radiotherapy.

However, research from Marie Curie, the University of Edinburgh and NHS Lothian found that not everyone receives palliative care or receives it too late to fully benefit, and this is particularly so for people with organ failure or frailty/dementia.  Interesting, GPs said that introducing palliative care was fairly straight forward for those with cancer, who typically had a clear terminal decline but much more difficult for patients with other life-threatening illnesses.  Some GPs also found it difficult to raise and discuss death and dying with patients, particularly with patients with a non-cancer diagnosis. The study concluded that a gradual and long term approach to phasing in supportive and palliative care while continuing with other treatment care planning would benefit patients and their families.

Having a terminal illness changes a person’s life. Feelings can change from day to day, hour to hour and even minute to minute. People may also experience changes in family roles and relationships.

It is common for people to feel denial, anger, fear, depression and even guilt. All these feelings are normal. At times you may be angry, afraid or worried and other times feel sad, guilty or lonely. At times you may not really believe your parent has a terminal illness because they have a strong sense of hope for the future.

Supporting and caring for someone with a terminal illness may be too much for you to handle by yourself.

Try to talk to people about your feelings and how you are coping. Talking to others about your feelings can help you to deal with your emotions and the impact the illness is having on your life. You may find it easier to talk to a close friend rather than someone in the family because this means you can be yourself and express yourself more easily.

Help is available, so make sure you let someone know if your feelings are stopping you doing the things you want to do.

Providing care for someone who is ill can place great physical and emotional demands on you and it is important that you take time out to recharge – spend time with your friends or have some time alone if you feel tired or overwhelmed.

Feeling guilty is common.

The person you are caring for could be and is most likely to feel the same. Talk to each other about this and try to share with family and friends. Never feel guilty about having time to yourself.

Share your worries with the person you are caring for. If you cannot talk to the person you are caring for, talk to a professional. They may be able to help and put you in touch with the right person who can help.

Everyone fears the unknown and caring for someone with a terminal illness can be scary. Try to learn about what is frightening you – the easier it will be to cope/deal with what your fears are. Ask questions – knowing the facts will help.

You may feel a need to exert your anger.

This is normal. Find ways to express these feelings as they arise because if you don’t these feelings may intensify. A hobby or a form of sport can help to release your anger and frustration.

The person you are caring for may take their anger and frustration out on you. Try not to feel responsible. Some terminal illnesses can have an effect on the person’s personality and lead to them having sudden fits of anger. Talk to your GP or another healthcare professional about this.

You may find it helpful speaking to a friend, counsellor or someone at a support group.

Write things down. Even with members of your family and close friends it can be difficult to fully express your feelings.

Avoiding the situation can stop you from doing things that you need to know and do. Denial is a coping mechanism that both patient and carer will often use when the person you are caring for is diagnosed with a terminal illness.

This can affect you and your family and friends too. If you are in denial don’t blame yourself or feel that you must do something about your feelings.

Consider talking to someone or find out about what services are available to you in your local area.  Again, your GP should be able to help with this.

Just as you have strong feelings and may struggle at times to cope with your own emotions; other people around you will have similar feelings and emotions and may look to you to support them as well. The person you are caring for is very likely to have mood swings and have good and bad days. They may even try to hide their feelings from you or behave in a way that you do not expect.

You may find they change from not wanting to upset you by talking about their illness to blaming you for their illness. Other times they may act as if nothing is bothering them.
This can be very distressing for you and may affect your relationship with the person you are caring for.

Be honest and talk about all your feelings, not just the positive ones. ‘Bad days’ are to be expected so you don’t need to pretend to be cheerful when you’re not, as this can stop you and the person who is ill talking about the things that are important to you both.

Marie Curie

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