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Deciding how to take the best care of a loved one when they are unwell or can't look after themselves can be a tough challenge for anybody.
It's vital to weigh up all of the considerations before making a choice, including factors such as:
- Do you have the time, resources and equipment at home?
- How you will manage the commitment, and who will support you?
- What sort of medical care or therapy does your family member need?
- What are the wishes of your loved one, would they prefer to remain at home?
Let's look at what palliative care means, when it's required, and what the options are if you're deciding how to provide the best level of support.
End of life or palliative home care
Palliative care means looking after the needs, wellbeing and health, both mental and physical, of somebody approaching the end of their life.
For many people, staying at home and passing away peacefully in a familiar place, surrounded by their loved ones, is their final wish.
In some cases, palliative care is required if a person has a terminal illness, or is suffering from a condition such as dementia which renders them unable to live independently.
The key priority for this type of care is to ensure the person feels as comfortable as possible. That might include:
- Pain relief
- Therapy or counselling
- Stress and anxiety relief
- Ongoing medical treatments
- Emotional support
It's also crucial to consider the emotional and physical demands on the carer.
We all want to look after our family members to the best of our abilities. Still, you should understand what sort of strain this can involve and ensure you have the emotional strength and physical capacity to manage.
One great option for many families is to look at support services, to take away some of the burdens and allow you to provide palliative care at home, but with professional help and emotional support when you need it.
What is involved in palliative care at home?
Every person is unique and might have particular needs depending on their age, health, condition, and personality.
Some of the typical palliative care at home requirements consist of necessary, day-to-day help with tasks such as:
- Personal care - washing, dressing, and using the bathroom
- Continence - maintaining privacy and dignity throughout
- Home care - cleaning, laundry, looking after pets and shopping
- Medication - administering medicines and collecting prescriptions
- Food - preparing meals, washing up and stocking the fridge
- Mobility - help to get around, in and out of bed, and sometimes to travel outside the home
- Company - being a listening ear and showing kindness and compassion
Palliative care needs can look very different from person to person.
For example, some family members needing end of life care might thrive on getting fresh air, and perhaps seeing friends or attending a place of worship.
Others might be immobile and need support with all their everyday functions, but rely on your care for companionship to have someone to talk to about coping with their illness.
It's vital to speak with the family member to establish their wishes and preferences if they can communicate their needs.
Professional home support for end of life carers
As we've explored, being a palliative home carer can be a challenge, but for many is a service they feel privileged to provide to a spouse, parent or loved one.
It is well worth considering some outside support, and this can help you cope in many ways.
- Live-in care means a nurse or carer is with your loved one around the clock. They are selected according to your needs and can be a great companion during their final days
- Home visits involve a carer coming to your home, or the home of your loved one. They might attend for set hours during the day, or per week, during which time you can take a break
- Respite care doesn't have to be long-term or permanent! Carers providing palliative care at home for more extended periods will need time off to recharge, and so even a short-term stay of two or three days can be helpful for all involved
Should you be considering looking for help with end of life care at home, you can look for local care home services through the Care Quality Commission or the Care Inspectorate Wales depending on where you live.
What equipment do I need for palliative care at home?
Most home-based end of life care services are needs assessed, and you might be able to find financial and practical help.
The person's GP is a primary point of contact and can arrange for community nurse visits, organise prescriptions and make referrals to specialists or other parts of the NHS.
Community palliative care teams, or local hospices, are often organised by the community nurse team and can offer various practical advice, hands-on support and respite care.
You may need specialist equipment, and sometimes the social services team provides this. In most cases, the process works like this:
- Contact the local authority in your area to get in touch with the social services team
- They will arrange for a care needs assessment to be carried out
- That assessment determines what help is needed at home, and how you can access support with the costs and equipment installation
- Community teams may also offer help with nursing visits and delivering meals, or signposting you to free services such as prescription medication deliveries
Equipment depends on the needs of your loved one, but might include grab rails, emergency alarms, stairlifts, adapted beds or chairs, and other devices for reading, watching TV and listening to the radio.
Is palliative care at home the right choice?
The decision very much depends on the needs of the person you wish to care for.
Some people don't want loved ones to be responsible for their needs and would like to live full-time in hospice care. Others would much prefer to remain at home and be looked after by a loved one.
For many people, the key benefits are that you retain independence. Friends and family can visit whenever they like. You can keep your same routine, feel at home, enjoy a familiar bed, and usually have continuous care from the same nursing teams.
However, it's also vital to think about the physical demands of needing to help somebody with bathing, walking and moving around. Adaptations, such as special showers might not be possible in every home.
Whatever decision you come to, remember that your capacity to provide palliative care at home, and the needs of your family member, may well change over time.
If you care for them as well as you can for as long as you can, and their health deteriorates, you may decide that a hospice facility would be a better option. There is always the option to rethink your care strategy.
To help understand your choices, you can also consult dedicated charities such as Carers UK, supporting and advocating for carers across the UK.Contact Us
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