If a loved one has been diagnosed with a terminal illness, you might be wondering how you can support them. It can be a scary time, especially if the diagnosis was sudden or unexpected.
There are a few things that someone with a terminal illness may need from you:
· Emotional and psychological support
· Help with finances
· Help with end-of-life planning
· Practical support and personal care, especially end-of-life care
You may be able to access help, such as support from home care agencies, solicitors or counsellors. However, it’s inevitable that you will need some knowledge about how to support your loved one, so we’ve put together a brief guide on how to support someone through a terminal illness.
A terminal illness is any condition that cannot be cured and may lead to the person’s death. Your loved one’s medical team may also call it a life-limiting or incurable illness.
Being diagnosed with a terminal illness does not always mean that your loved one will die very soon. Some people who are terminally ill may live for months or years with their diagnosis.
There are many illnesses that can become terminal, and everyone’s experience will be different. Your relative’s medical team will be best placed to talk about their prognosis.
People with a terminal illness may still have treatment. Your loved one will probably continue to be treated by their medical team. Treatment might focus on managing symptoms, such as pain, nausea or fatigue. Home care workers might be able to support with personal care.
For many people, finding out that their illness is not curable is a difficult thing to accept. There are many ways that you can help your loved one when it comes to emotional support. Because everyone is different, the most important thing that you can do is to follow their cues. Some people may want to talk about their condition and the future. Others may prefer to process it themselves first. They may want to see more friends and family than usual, or they may not.
Some people with an incurable illness find nights more difficult, especially if they are struggling to sleep. You could arrange for family members, friends or a care worker to be available for them during the night.
Your loved one may want to talk to a professional counsellor or therapist. Their medical team may be able to arrange this.
Just because your loved one is ill, it doesn’t mean that they can’t continue enjoying themselves when possible. As someone who knows them well, you’re best placed to say what their interests are. Depending on their condition, can you help them to continue accessing their hobbies? If they are tired or in pain, they may not be able to do strenuous activities. However, you may be able to find things that still interest them or suggest new alternatives.
Some people with a terminal illness may want to talk to a spiritual leader, even if they’ve not been very religious in their earlier life.
Learning that your loved one has a terminal illness is probably very difficult for you to process too. If you need more support, your GP may be able to refer you for counselling.
A terminal illness can put extra strain on a family, especially if the person who is ill was working. Sometimes other family members need to take time off work to care for them.
There can also be costs associated with a serious illness. However, you may be able to get some financial support:
· Many people are entitled to free NHS prescriptions. If your loved one is over 60 or an NHS inpatient, they will definitely be entitled to free prescriptions. Many people with serious or on-going health conditions, such as cancer, are entitled to a medical exemption certificate.
· If your loved one isn’t entitled to free prescriptions, they may be able to apply for a prescription prepayment certificate (PPC), where they pay a standard charge for three or 12 months which will cover all their prescriptions during that time.
· If you are looking after your loved one for more than 35 hours a week, you may be able to apply for Carer’s Allowance.
· There are a variety of benefits that your loved one may be able to claim. Depending on their circumstances, this may include Personal Independence Payments, Attendance Allowance, Employment and Support Allowance or Universal Credit. If a healthcare professional thinks your loved one has less than 12 months to live, these applications may be fast-tracked. They could also be paid at a higher rate.
· Your loved one may receive care funding through their local authority, or NHS continuing healthcare, depending on their condition.
· Some organisations may offer grants to people who are in need. Some of these grants may be for a specific purpose, such as home modifications or holidays.
· In some areas, patient transport services can offer free transport to medical appointments. Some hospitals offer free or reduced parking for people who need to attend regular appointments.
Your loved one may want to make some legal decisions before their death. They may want to talk about the kind of treatment and care that they’ll receive, or about what will happen after they’ve died. Some of these discussions may feel uncomfortable at first, but they can help you feel certain you’re following your relative’s wishes.
A will is a legal document that details what someone wants to happen to their possessions, money and property after their death. If someone dies without a will, there are rules about who will inherit. These are called the rules of intestacy, and they cover property, money and other belongings.
Writing a will is especially important if your loved one is not married but lives with a partner. It's also crucial if they have strong feelings about who should inherit what.
Not all wills need to be drawn up by a solicitor, but it’s a good idea to have a solicitor check it to ensure it’s valid.
Lasting power of attorney allows someone to nominate someone to make decisions on their behalf. Towards the end of their life, your loved one may be more confused or unable to make their own decisions, either as a symptom of their condition or as a side effect from medication.
There are two different types of lasting power of attorney:
· Health and welfare: this allows someone to make decisions about medical care, including personal care and moving to a care home. This can only be used when the person is unable to make their own decisions.
· Property and financial affairs: this allows someone to make decisions about property and money, including managing bank accounts and selling their home. This can be used as soon as it has been registered, even if the person still understands what is happening.
To appoint a lasting power of attorney, your loved one must fill in some forms and have them witnessed.
Advance statements are a record of someone’s wishes about their future care. They’re not legally binding, but will help the healthcare team take care of your loved one.
They may include things like whether your loved one would prefer to remain at home or go to a hospital, care home or hospice, religious beliefs, and other preferences.
An advance decision is a decision to refuse certain types of treatment, such as ventilation or CPR. An advance decision might sometimes be known as an advance decision to refuse treatment (ADRT) or a living will.
If your loved one wants to refuse life-saving treatment, the advance decision needs to be written down, and signed by both your loved one and one witness. If this means that your loved one may die as a result, they should also write that they understand this.
Palliative care is the care, support and treatment for people with a terminal illness. There are five stages of palliative care:
1. Initial assessment and care planning
2. Emotional preparation
3. Early stage care
4. End-of-life care
5. Bereavement support for loved ones
Palliative care might be delivered by a wide variety of people, including home carers, doctors, nurses, counsellors, therapists and others. It can also be delivered in several places.
If your loved one is currently living at home, they may need some extra help to stay independent. This may be help with housework, shopping or meal preparation. It could also be more personal help such as medication support, washing, dressing and going to the toilet.
Home care agencies can offer support to people with personal care needs. Some people may need or want just a few visits a week, whereas others may need longer visits each day. As your loved one’s condition progresses, their care needs may increase.
For people who need more regular personal care, live-in home care can be a good choice. A live-in carer can’t provide 24-hour care alone. However, they’ll be available to be on-call more of the time when your loved one needs someone.
Live-in care is also a great option if your loved one wants more regular companionship.
If your loved one needs care throughout the day and night, you may need to arrange multiple carers, or consider a move to residential care.
Some people may choose to move to a care home or nursing home for their palliative care. This is likely to be a good option for people who need specialised nursing care or 24-hour care.
End-of-life care is one of the stages of palliative care. It’s usually the treatment and support for people during the last 12 months of their lives. At the very end of your loved one’s life, they may need more specialised care.
Many people choose to stay at home at the end of their lives. This avoids a stressful move at an already difficult time. It also means that your loved one can remain in a familiar environment. Lots of people who stay at home say that they’re glad to still be around family, pets, and friends.
If your loved one receives care from a home care agency, their care needs may increase towards the end of their life. Many carers will have extensive experience in supporting people at this stage, and will be able to support your loved one and the rest of the family.
Some people may choose to have end-of-life care at a hospice. If your loved one can’t decide whether to move to a hospice or remain at home, they may be able to visit a hospice during the day and come home at night, or have short respite breaks there.
Alternatively, your loved one may stay in the hospice as an inpatient for a longer period of time.
Hospices can usually provide medical care in addition to personal care and therapy. Hospice care is provided free of charge across the UK.
For some people, moving to a care home may be the right choice at the end of their lives. There will always be someone on hand in case of an emergency, and the experienced staff team will be able to reassure your loved one.
It’s important to remember that, while you are supporting your loved one through their health concerns, you will also be affected by their illness and death. If possible, try to take some time for yourself, and seek counselling if you feel that you need it.
A terminal illness is one that is incurable and will probably lead to the person’s death. A chronic illness may also be incurable, but will probably not be the cause of the person dying. For example, advanced cancer may be a terminal illness, whereas diabetes can be a chronic illness.
End-of-life care is the treatment and support given to someone towards the end of their life, usually in the last 12 months before they die. This is usually focused on improving their quality of life, through symptom management, counselling and personal care.
Everyone with a terminal illness is different, so they will receive different types of care. Some people may need medication to manage symptoms or need personal care such as help with washing, dressing and going to the toilet. Some people may also want counselling or therapy.
Many people receive palliative care at home. This may include personal care, where a home care worker supports them with washing, dressing, feeding or going to the toilet. They may need to take medication or use oxygen at home, and have regular visits from medical professionals.
Get in touch with Tiggo Care today to see how we can help you or your loved one.
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