In the run up to publication of my new book Carers and Caring; the One Stop Guide; how to care for older relatives and friends I am sharing some of the practical solutions learned from research and experience. If you think any problems have been missed you can email me and tell me, and I’ll make sure they are covered in the next edition and online on my website at www.juneandrews.net.  Today is a hard topic D for Dying at home.

People sometimes wonder what the final days will be like if they have never been with a dying person before. In the time before people die, they typically sleep a lot and rest. The various body systems are just quietly shutting down. They probably won’t eat or drink much, if anything.  It is beautifully described here by Dr Kathryn Mannix in three or four minutes. She says that we don’t have the language to talk about it because we have stopped mentioning the D words. We say someone “passed” not that they “died”. And we don’t know what to expect. People don’t say someone is “dying” but instead they say they are “seriously ill.” So when you are caring for an older person at home it may be the first time you witness a normal death.

Caring for someone who is dying at home is a demanding experience, both physically and emotionally. You should expect support from your GP and the district nurses. It may be that a charity such as Macmillan or Marie Curie is able to provide nurses, to allow you to get sleep for example. The health care team can set up home care services to give you help with the care. Not least, the palliative care team can make sure that the person you are caring for does not suffer any pain. Don’t hesitate to ask them for more pain relief if you think that it’s not working. 

You need to be aware of your limits and know when to ask for help to provide the best care. You may wish to be with the person all the time, but you yourself must rest. District nurses can support you with advice and assistance in practical aspects, for example how to care for someone who is spending all the time in bed. They may provide special equipment such as air mattresses that will keep the person comfortable. 

The person may have asked to die at home, and although you’re trying to make sure this happens, it might not be possible for you. You may consider asking for a transfer to a hospice.  It’s not a failure when that happens. Everyone has to adapt to circumstances. Remember to ask friends and family for support. Even if all they can do is bring you food or make phone calls, it will make a difference. Tell them what would help. You need a listening ear, and if you are a member of a faith community they will know what they can do to support you. 

There is more about what to expect in Chapter Six of Carers and Caring. The advice there relates to when you are nursing someone at home. Very many people die at home or in a care home, and there is much more on this in that chapter, including information about legal and administrative things you have to do.

For information and advice about the end of life look at  Carers and Caring: The One-Stop Guide: How to care for older relatives and friends - with tips for managing finances and accessing the right support  available from all good bookshops in May 2022

Three hints:

1.     There are health care teams who can support you to allow a death at home

2.     Pain is not necessary

3.     Your friends can help and don’t hesitate to tell them what you need