Finding out that your loved one is facing palliative care is a very difficult concept to digest, even if you’ve watched them battle Alzheimer’s or Dementia for a very long time. Depending on the person’s age and type of Dementia, a patient can live for up to a decade after a diagnosis has been made. But that does not make it any easier when it comes to accepting that your loved one is facing end of life care. Even though you are fully aware that your family member’s Alzheimer’s or Dementia is progressing, you may find it hard to even believe what you’re hearing, and that’s perfectly normal. The end of life sector provides palliative care for over 200,000 people with terminal and debilitating illnesses in the UK. Watching a family member go into palliative care will be one of the toughest things you’ll ever do, but it is important to remember you’re not alone. Palliative Care intends to;
- Improve their quality of life.
- Relieve pain and any other distressing symptoms.
- Support life and look at dying as a normal process.
- It does not speed up or postpone death.
- Combine psychological and spiritual aspects of care to create a calmer atmosphere.
- Offer a support system so that people are able to live as actively as possible until death.
- Offer a support system to help the family cope during end of life care and during bereavement.
- Utilise a team approach to address the needs of the person in need of care, alongside their families.
Here are 5 tips to help you cope if your family member is facing palliative care.
Remember that this is what’s best for your loved one.
It is important to remember that when your loved one is recieving end of life care, it is the best possible thing for them. Palliative care is designed for those who are no longer going to get better, and those with a complex illness. Whether they are having palliative care from home or hospital, the main aim of this type of care is to improve their quality of life and relieve them from any pain and any other distressing symptoms they may experience. According to a Marie Curie study, 63% of the UK’s population wish to die in the comfort of their home, and if your family member is amongst this figure and receiving end-of-life care at home – remind yourself that you’re doing what is best for them. Alongside this, if they are in a hospital or care home then remind yourself that they are in a safe place and being well looked after.
Join a support group.
Dementia affects around 850,000 people in the UK alone, and this number is expected to rise to 1,142,677 by 2025 – so do not worry, you are not alone. Hundreds of people across the UK will understand exactly what you’re going through. The hospice sector provides end-of-life care and bereavement support for 40,000 families a year. Sometimes being surrounded by people who can empathise with what you’re going through will help, as well as talking about your own experiences. Alternately, if you have any questions, queries or just need to talk to someone then use the palliative care team attending to your family member. They are there to help you through it after all.
Understand that you may not be the best person to provide care.
Providing domiciliary care for a loved one is incredibly hard, and due to the difficulties that come with palliative care, you may need to accept that a professional needs to take over. End-of-life care is a complex care that involves making decisions that you couldn’t ever imagine making for your loved ones, and whilst you may be able to provide day-to-day general care, they wild need specialist care when it comes to medication and other needs.
Put your own health first.
According to Get Palliative Care, 60% of 44 million caregivers work a full-time job and spend roughly 18 hours a week caring for an ill family member. Sometimes you may feel resentful and overwhelmed (which is often followed by guilt) that you’re in this position, but asking for help doesn’t make you weak. Putting your own health first when a family member is getting palliative care simply means you are being sensible and looking at the bigger picture. How will you be able to continue supporting your loved one if you burn yourself out? Due to the way Alzheimer’s and Dementia attacks the brain, your loved one’s immune system will be very weak, and it important to make sure that you stay healthy so that you do not pass anything on to them that they cannot fight off. So, know when to ask for help and take a short break.
Make sure the required paperwork is filled out.
As soon as you find out your loved one needs palliative care, it is important to talk about their wants and needs when it comes to their end-of-life care, and fill out the necessary paperwork. Families making medical decisions on behalf of a loved one is devastating, but making sure their wishes are made clear beforehand will help you come to a certain decision. Asking your family member to make an advanced decision whilst they have the mental capacity to do so means that you can respect their wishes later on in their care. You can find out more about advanced medical decisions here. If you would like advice or help regarding palliative care for a loved one then do not hesitate to get in touch.