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When the person is dying, you will be seeking to provide comfort and continue care. There will be practical things to do but taking the time to just be with the person can also be important.
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If you are at home and you have a window in the room, it may be valuable to position the bed so they can see out the window. A single bed or hospital bed may be a good way to provide the care that is required. Talk to your GP, palliative care team, or other health care professional about where to hire a hospital bed. There are also private companies that hire out hospital beds.
Use of a portable toilet (called a commode) can be useful. Alternatively you can ask at the pharmacy or your health service where you can buy large absorbent pads to assist if the person is unable to tell you when they need to go to the toilet. Playing the person’s favourite music and using gentle lighting can make it a nice environment for the person. Take the time to just sit with the person. Holding their hand can help you feel connected. An extra chair in the room for visitors would be valuable.
The person you are caring for may have little interest in food and fluids. This can become quite concerning for you as a carer, however it is a natural process. Forcing someone to eat or drink at this stage can be distressing and cause more discomfort for them. Some people may also have difficulty swallowing at this stage and solid food may actually cause them to choke.
If the person you are caring for is having difficulty swallowing, medications that are usually given by mouth may be given by other means as necessary. They may be given under the skin by a syringe driver which delivers a drug via a tube with a small needle under the skin. If you are caring at home, then a nurse will come to your home to change the syringe each day.
Some medications will also be stopped at this stage depending on the reasons for them taking the medications in the first place. Talk to your health care team about whether all medications are helpful at this stage. Don’t stop a medication without seeking medical advice.
In the last few days of life one of the priorities is to maintain comfort. Therefore, if you are caring at home you may be asked by the GP or palliative care doctor to get some medication to have in the house just in case it is needed. Instead of trying to find a pharmacy open late at night or on the weekend, you will have immediate access to the medication if the person needs it. Having extra medication in the house, just in case, can also reduce the need for the person to go to hospital unexpectedly.
Dry mouth is a common problem. Keeping the mouth moist will provide comfort for the person you are caring for. This can be done by offering sips of water or by using a moistened swab. Ask your nurse how to provide this type of mouth care. Use a lip balm or a moisturizer on the lips to keep them moist.
The person you are caring for may not be able to tell you if they are uncomfortable. You, and the health care team, may need to try and judge this by their facial and body expressions. It might be hard to work out what their needs are but changing positions, a hand or foot massage or simply putting on some favourite music may help. If you are concerned that the person you are caring for is in pain or discomfort, and you can’t seem to get the pain under control speak to the health care team for advice. If the pain seems to be from positioning in the bed, regular position changes should be made (every 4 to 6 hours). This is not necessary overnight.
Hygiene needs will vary from day to day. A full body wash may not be needed every day at this stage. Comfortable clothing and loose bed sheets may be helpful.
You may notice that the amount of urine is less in the last few days and may also be darker in colour. Do not be alarmed. As the person you are caring for stops or reduces the amount they are drinking (and eating), the amount of urine (and faeces) also reduces.
The person you are caring for may lose control of their bladder and bowel function. This does not happen to everyone but if it does there are pads that can be used and absorbent sheets that will help with comfort.
Changes to breathing may occur. There may be noisy or rattly breathing or a time when breathing appears to stop for long periods of time. You may find it difficult to listen to the noisy breathing but it is unlikely to be distressing to the person. There are medicines available to help lessen the noise. Sometimes opening a window or putting on a fan may help with the breathing.
The person you are caring for may seem restless at times; they may call out, groan and may appear agitated. This occurs due to the decrease in circulation of blood to the brain. A change in position may help or a gentle massage or quietly playing their favourite music. If restlessness persists, seek advice from your health care team.
The person may appear disorientated or confused as to where they are and who is with them. They may become agitated and distressed. Please speak to your health care team. They may prescribe medications to help with this.
There may be periods of the person lapsing into and out of consciousness. Despite them appearing to be asleep, their hearing may still be present. Some people go into a deep sleep and may not awake, while others may have periods of being alert, and if words are spoken they may not appear to make sense. This is normal.