Discovering that you have a life limiting illness can lead to many different emotions.
Learning to Live with a Life Limiting Illness
- The life limiting illness may run in your family
- Something that you have exposed to may have caused the life limiting illness
- Sometimes there is no explanation as to why you got the illness
With time as you learn to live with your illness, your emotions may change. Shock or fear may give way to:
- Anger because of the life limiting illness
- Sadness or depression because of having to adapt to living with a life limiting illness
- Stress or confusion about how to take care of yourself
Your Self-Image May Change
Living with a life limiting illness will change the way you feel about yourself. You will feel different. You might be embarrassed that you have an illness. With time you will learn to live with your illness.
A person with a hearing difficulty will learn to use a hearing aid. This becomes their new normal.
People diagnosed with diabetes will learn to test their blood sugar and take insulin when necessary. This is their new normal.
Expect to Feel Challenged
You may feel challenged by a variety of factors. You may need to make lifestyle changes such as stopping smoking etc. The medicine regime and the treatments required for your illness may also be overwhelming as you learn to adapt to them.
However you will learn to live with them. You will feel like yourself again as you learn how to fit your illness into your life.
Give yourself time to learn how to take care of your illness.
Changing Feelings and Emotions
It is challenging to manage your life limiting illness day by day. Sometimes this can affect your mood and you may feel very alone. This is especially true at times when your illness gets more painful or restrictive.
You may get some of the emotions you had when you were diagnosed with the life limiting illness:
- Depression
- Anger – why is this happening to me?
- Fear – what is going to happen to me?
It is normal for you to have these feelings. Stress can make it harder for you to take care of your life limiting illness. You can adapt to cope with stress to help you manage day to day.
Actions such as the following can help you live with your life limiting illness:
- Go for a walk
- Go to counselling
- Talk with friends and family
- Attend support groups with people living with similar conditions
- Learning About Your illness
- At first it may seem that your illness is controlling you, but the more you learn and manage for yourself, the more normal and in control you will feel.
The more you know about your illness will help you manage and feel better about it. Your GP and other medical practitioners will be able to help. Never be afraid to ask. Finally, be careful about information on the internet as not all the information on the internet is from reliable sources.
Where to be Cared For
Many people find it helpful to make decisions regarding their welfare and their family’s welfare in advance. These decisions can include matters such where you wish to cared for; arrangements for pets etc. It can also help your loved ones to know that legal arrangements are taken care of so that they can implement your wishes.
Home
Some people prefer to be cared for at home with their family and friends.
Your GP will be a key point of contact to discuss arrangements for being cared for at home. A district/community nurse will coordinate and organise you home care. Alternatively you may wish to contact your local social services department. An assessment will be undertaken to identify your care needs. Sometimes it may be necessary depending upon your illness to make alterations to your home (such as fitting a chair lift etc).
Caring for somebody with a life limiting illness at home can be demanding. It is helpful to ask your GP and district/community nurse about people and organisations that may be able to help you.
Hospice
Hospices offer specialised care and support for people affected by life limiting and terminal illnesses. They offer a more intimate and homely environment for care support than hospitals.
Hospices will provide support to improve patients’ quality of life throughout their illness. Hospices often provide services to help people support themselves at home. They may also offer day patient services for people affected by life limiting illnesses.
Should you wish to find out more information about the services provided by hospices you can find information on the Hospice UK website.
Residential Care
Some people choose to be cared for in a care home or a nursing home. Care homes can offer long-term care but may also offer short-term care or respite care to support those caring for you.
Nursing homes offer enhanced nursing care to the services offered by residential care homes.
Care home employees will look after patients day and night. They provide a wide range of support services including things like help with washing and dressing etc.
Many people will be expected to pay something towards their residential care. The amount you have to pay will be based on national guidelines. Residential care costs can often significantly reduce the size of a person’s assets. Nursing care costs may be covered by your local authority. For further information please refer to the NHS Continuing Healthcare scheme.