Care and support at home
Receiving the news that you or your loved one requires palliative care and support can be overwhelming and emotional.
When facing a life-limiting illness, we understand the desire to stay in a familiar environment. Our focus is on ensuring your loved one feels comfortable, their wishes are heard and is able to live life on their own terms during the final months or years.
If you decide to receive care at home, our compassionate team will gather with you and your loved ones to develop a tailored support plan that revolves around your wishes and requirements. This collaborative plan will be guided by your preferences and choices, allowing you to pass in a dignified and respectful way.
Our team includes carers, who have expert knowledge, experience and training needed to provide your loved one with the highest level of care and support.
When is Palliative Care Appropriate?
Palliative care covers a spectrum which is broader than end-of-life care. An incurable illness may require palliative care for several years, enabling your loved one to live well for as long as possible. How soon this kind of care may be needed wholly depends on the Member, their illness, their family situation and, of course, their own personal preferences.
At Revelation, it is our deeply held belief that every person deserves dignity and respect in all aspects of their care. This is perhaps most important as we approach the end of our lives.
Developing a care plan early on can help reduce the stress of dealing with an incurable illness. It can also ensure a care team is on hand, one that has experience with your loved one’s health and family circumstances.
The Difference Between Palliative And End-of-Life Care
What is end-of-life care?
End-of-life care is treatment, care and support for people who are nearing the end of their lives. It is an important part of palliative care and aims to help people live as comfortably as possible in their last months, weeks or days of life and to die with dignity. It is particularly geared towards managing the physical symptoms and providing emotional support for the individual, their family and their friends.
Every individual has the right to express their wishes about where they want to receive end-of-life care and where they want to die. It helps if the individual’s wishes are written down as a personalised care plan which is reviewed regularly as the situation changes. We support loved ones all the way through the process – you may have many questions about the care plan or types of treatment, and so our staff are would be happy to guide you through this process.
Who receives end-of-life care?
People are considered to be approaching the end of their life if they’re likely to die within the next 12 months, although it’s not always possible to predict when someone will die. End-of-life care is also given to those whose death is thought to be imminent.
What is palliative care?
If you have an illness that cannot be cured, palliative care will help you manage the pain, reduce the distressing symptoms and make you as comfortable as possible. As well as managing the physical symptoms, emotional, psychological and spiritual support can be provided for the individual as well their family and friends to treat the whole person and not just their illness or its symptoms.
While palliative care includes end-of-life care, the key difference is that it can be used at any point along the treatment process. The time spent in palliative care differs from person to person depending on the illness and the type of support they need. While some people might spend years receiving palliative care for a prolonged illness, others might only request this type of care in the months, weeks or days before they pass away. During this immensely tough time, our care team works closely with the individual and family to make them as comfortable and dignified as possible. It’s certainly never easy, but having staff who genuinely care can make a big difference.
Who receives palliative care?
- Palliative care is for those suffering from a life-limiting illness that cannot be cured. That includes those who:
- Are suffering from an advanced illness such as cancer, dementia or motor neurone disease
- Have an acute condition caused by a traumatic event such as an accident or stroke
- Are elderly or frail and have co-existing conditions that could bring death in 12 months
- Have an existing condition and are at risk of a sudden decline that could cause death
Our Palliative and End-of-life Care at Home can include:
Home visits: Scheduled home visits provide support when continuous care isn’t necessary. Ideal for situations where your loved one doesn’t require 24/7 supervision, these visits involve administering medication, assisting with daily tasks and offering companionship. This tailored approach ensures their wellbeing while allowing them to maintain independence in the comfort of their home.
Live-in care: This involves dedicated care assistants living in the same home as the individual, offering continuous support throughout. This comprehensive and personalised approach ensures that your loved one receives ongoing assistance, providing a sense of security and well-being within their familiar environment.
Benefits of care at home
Acknowledging and confronting weaknesses and mortality is a challenge for everybody, but this reluctance is often heightened in the elderly, which may cause them to distrust unfamiliar people or environments during times of ill health and vulnerability. Opting for palliative care in their own home can provide comfort and familiarity, giving the opportunity for trust and friendship to be built and eliminating stress and anxiety.
Care at Home may also be more convenient for family members, giving peace of mind that their loved one is being looked after and cared for in the best possible way.
Tips for Arranging Palliative Care at Home
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- Create a Comfortable Environment: Personalise the space with familiar items, such as photos or favourite blankets, to create a comforting atmosphere.
- Ensure Accessibility: Arrange furniture and equipment to allow easy movement for your loved one and carers. Remove unnecessary items that may cause clutter.
- Prioritise Safety: Use non-slip mats, secure grab bars in bathrooms, and ensure all equipment is in good working condition to prevent accidents.
- Maintain Privacy: Use screens or curtains to provide privacy during medical procedures or personal care activities.
- Regularly Review Needs: The needs of your loved one can change over time. Regularly assess and adjust the arrangement and equipment as necessary to ensure ongoing comfort and care.
By carefully selecting and arranging the right equipment, you can create a safe, comfortable, and dignified environment for palliative care at home.
Creating a Comforting Environment for Palliative Care At Home
Advice for Organising Palliative Care at Home
Providing palliative care at home requires thoughtful arrangement and the right equipment to ensure comfort, dignity, and effective care. Here is a guide on the essential equipment that can make a significant difference in the quality of life for palliative care at home, along with tips on how to arrange it.
1. Hospital Bed
What it Does: A hospital bed is crucial for your loved one’s comfort and care. It allows for adjustments to the head and foot positions, helping your loved one sit up, lie down, and elevate their legs. This can alleviate pain and assist with breathing and circulation.
How to Arrange It: Place the bed in a central, accessible area of the home, ideally in a quiet room with natural light. Ensure there is enough space around the bed for caregivers to move freely.
2. Pressure Relief Mattress
What it Does: These mattresses help prevent bedsores by evenly distributing your loved ones weight and reducing pressure points.
How to Arrange It: Use this mattress on the hospital bed. Regularly check and adjust its settings to ensure optimal pressure relief.
3. Bedside Commode
What it Does: A bedside commode provides a convenient and safer alternative to walking to the bathroom, especially for those with mobility issues.
How to Arrange It: Place the commode close to the bed, ensuring it is stable and easy to access. Keep it clean and sanitised regularly.
4. Mobility Aids (Wheelchairs, Walkers)
What they Do: Mobility aids assist your loved one in moving around the house safely, reducing the risk of falls and allowing for some independence.
How to Arrange Them: Store these aids in a place where your loved one can easily access them. Ensure pathways are clear of obstructions to facilitate movement.
5. Lift and Transfer Devices
What they Do: These devices help carers safely lift and move your loved one from the bed to a chair, toilet, or bath, reducing the risk of injury for both your loved one and the carers.
How to Arrange Them: Keep these devices near the bed or other frequently used areas. Ensure all caregivers are trained on how to use them properly.
6. Medical Supplies and Medications
What they Do: These include syringes, gloves, wound care supplies, and prescribed medications necessary for managing your loved ones’ symptoms.
How to Arrange Them: Organise these supplies in a dedicated, easily accessible storage area. Label everything clearly and keep a log of medication schedules and supplies inventory.
7. Oxygen Therapy Equipment
What it Does: For those with respiratory issues, oxygen therapy equipment can provide relief and improve breathing.
How to Arrange It: Place the oxygen concentrator or tanks in a well-ventilated area, ensuring the tubing reaches your loved one comfortably. Keep emergency contact information and instructions for use nearby.
8. Communication Devices
What they Do: Devices such as intercoms or emergency call buttons help your loved one communicate with caregivers quickly if they need assistance.
How to Arrange Them: Install these devices in easily reachable places for your loved one, such as near the bed or favourite chair.
9. Personal Hygiene Aids
What they Do: These include items like shower chairs, bedpans, and bathing wipes to maintain hygiene and comfort.
How to Arrange Them: Store hygiene aids in the bathroom or another convenient location. Ensure they are cleaned regularly and readily available when needed.
What You May Observe at End of Life
The following end of life changes are presented in the order in which they usually appear, but may occur for many days prior to death. Some practical advice and comfort measures are also included that may help the family
This is due in part to changes in the metabolism of the body. They may also appear to be sleeping with open eyes. As their caregiver, you can…
- Sit with them and hold their hand, speaking softly and naturally.
- Plan conversation for times when they are more wakeful and alert.
- Keep visiting times brief or encourage visitors to sit at bedside.
- Speak directly and normally, even though there may be no response. Never assume someone cannot hear, as hearing is thought to be one of the last senses to be lost.
In this occurs it is important to…
- Speak calmly, clearly, and naturally.
- Remind them of the time, place, and who is in the room.
- Gently manage resistance to those things that provide comfort by communicating reasons. For example, “It’s time to take your medication so you won’t begin to hurt.”
It is quite common to have 10 to 30 second periods when breathing may stop. They may also have periods of rapid, shallow panting type breathing. Sometimes there is a moaning-like sound on exhale. This is not distress, but the sound of air passing over relaxed vocal chords. Be reassured that these patterns are very common and indicate a decreased circulation in the internal organs.
A caregiver can assist by…
- Elevating the head and/or turning the person onto one side may bring comfort.
- Hold his/her hand; speak gently and reassuringly.
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It is important for yourself to…
- Understand that the body will naturally begin to conserve energy which is expended in these tasks.
- Offer small servings of light foods, decrease food portions as requested, and encourage but not force fluids.
- Be aware of the decrease in swallowing ability, and gently remind the individual to swallow.
- Keep the person’s mouth moist and comfortable. Small chips of ice, frozen juices or popsicles may be refreshing.
- Allow the person to express their experience, and be reassured that this behaviour is normal.
- Understand that they may become restless and pull at bed linen and clothing.
- Avoid physical restraint, if possible.
- Consider playing calm and soothing music or giving a gentle massage to ease their restlessness.
- Call the family doctor if home safety becomes a concern.
- Irregular pulse or heartbeat (a normal pattern which indicates the “slowing down” process).
- Loss of control of bladder or bowels. Consult with your nurse for appropriate care required.
- Changes in temperature or colour which indicate circulation is conserving to support the most vital organs, or the possibly the brain sending unclear messages. Keep the person warm, or provide a light sheet if he or she removes the covers.
Our consultation is always in sync with your strategy
Final moments and saying goodbye
A dying person will often try to hold on, even though it brings prolonged discomfort, in order to assure that those left behind will be all right. A family’s ability to reassure and release the dying person from this concern is the greatest gift of love they can give at this time. When the person is ready to die, and the family is able to let go, this is the time to say good-bye in personal ways. It may be helpful to just lay in bed with the person, hold a hand, and/or say what you need to say. Tears are a natural part of making peace and saying good-bye.
At the time of death there will be no response, no breathing and no pulse. The eyes will be fixed in one direction and they may be open or closed. The mouth may fall open as the jaw relaxes, and their may be loss of control of bladder or bowels.
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I think it would help people to know that Palliative care isn’t about dying; it’s about enabling you to live with the time that you’ve got left.