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Dying and saying goodbye is hard. 

Practical aspects: 

Towards the end, a person is likely to be in bed most of the time. For your safety and that of the person being cared for as well as visiting staff, EPC is likely to recommend a hospital style of bed. This is one that goes up and down in height and can sit a person forward. It is hired – so there will be some cost.

Many families put this bed in a family area so the usual household activity can be enjoyed. It is better to get the bed while the person can still move around a little.

Hips, buttocks, shoulders and bony points are likely to develop sores if someone isn’t moving very much. EPC staff will explain how to move someone on the bed and relieve pressure. We have some prompt sheets to help.

Other issues

Toileting: Consider how this might be managed. It could be a commode, urinal, continence products etc. Catheters are not generally required at end of life. Have you thought about what happens when someone can’t get out of bed?

Food and drink: It is common to not be interested in food and drinks. If someone is wanting these, make sure they are sitting up and awake to properly swallow. 

Mouth care: If they aren’t eating and drinking very much the mouth becomes dry and the tongue coated with a white layer. See EPC Symptom Management Guidebook for ways to care for the mouth.

Talk to EPC staff  about these and all the care that may be required.

Emotional Support

Many people use words like battle, fight, struggle and supportive care before someone dies, then words like passed on, left us.

There is no right or wrong way to say things but try and be open before someone dies, to give them the chance to say things their way.

It is OK to say someone is dying. It is hard but honest.

Ideas to help you cope

  • Accept help that is offered (it might be a cooked meal, or someone else to be in the home while you walk the dog).
  • Restrict the number of people calling in. While their visit can be welcomed, it can be tiring.
  • Have a family roster so you can get some rest.
  • Share the care amongst family or have community based organisations helping.
  • Let friends help - use your own community connections.

Looking ahead

Is there something important that you need to be able to do (banking, use the computer to get bills)?

Every person has an EPC Family Support Worker allocated to them. They are a wealth of knowledge and great listeners. Use them!