Organising help before they go home

When you are caring for someone, it’s helpful to think about what you might need to do before they go home from the hospital or hospice.

The hospital or hospice should set up the services you need. As a carer, you should be involved in these plans. Your GP and community nursing team should also be told that the person is being discharged.

There are practical things you can organise before the person you are caring for goes home. You could talk about which room they prefer to sleep in and if there is anything they need in it.

You may also need to make changes to the home. Financial help may be available for this. The hospital or hospice staff should explain any equipment the person will need. This could include a mattress or bed, and other smaller practical aids.

Before the person you are caring for goes home, they should be given all the medicine and information they need. It is also a good idea to check if they have any special dietary requirements.

Setting up help and services

All the practical help and services the person you are caring for needs should be set up before they go home. This is usually done by the hospital or hospice staff, with a social worker. All hospitals and organisations have policies to make sure a person is safely discharged and the care they need at home has been organised.

The person you are caring for may have a Holistic Needs Assessment before they go home. In the assessment, they will be asked lots of questions about how they are feeling and what help they need. This is to make sure that they get the right support, at the right time. Everyone involved in the person’s care should have a copy of the assessment, including their GP. You can ask the nurse about this.

If there are a lot of things to talk about before discharge, the ward or hospice staff may arrange a meeting. This may involve:

  • the person with cancer and you, if you are their main carer
  • the doctor in charge of their care
  • specialist nurses
  • an occupational therapist (OT)
  • a social worker.

We have more information about health and social care professionals and how they can help you.

If you are the main carer, you should be involved in any plans or decisions. It’s important to let the healthcare team know this. Remember that plans can be changed later if the situation changes. For example, when the person first goes home, you may not need any help looking after them. But if they start to get weaker, they may need help with personal care, such as washing, dressing and eating.

The person you are caring for should have information from the hospital or hospice to take home. This may explain the medicines and type of diet they need, and where to get more support. If the information is not clear, ask the doctor or nurse for more details.

Make sure the person you are caring for has the medicines they need when they are discharged. You will need enough to last until the GP can arrange a new prescription. You can talk to the pharmacist about this.


Practical aids and equipment

The hospital or hospice staff will talk to you both about any equipment you will need in the home. They can arrange for an occupational therapist to visit and assess the person’s home. Some hospitals and hospices can supply some equipment a day or two before discharge.

You can also hire equipment from voluntary organisations and charities, such as the British Red Cross.

Beds and chairs

If the person you care for needs to spend a lot of time in bed, it is important that they are comfortable. The district nurse can arrange a pressure-relieving mattress, hospital bed or supportive chair.

Once the person is home, you can ask them what would help make them comfortable. They may need to try different sitting or sleeping positions. Using lots of pillows can help. V-shaped pillows can help relieve pressure on the back. If the person has swollen arms or legs, prop them up on extra pillows to help reduce the swelling.

If the person you are looking after can sit in a chair, it’s important that they are well-supported and comfortable. An OT or physiotherapist can give you advice on this. The district nurse can usually arrange for the loan of a pressure-relieving cushion.

Commodes, bedpans and urinals

If the person you are caring for finds it difficult to get to and from the toilet, they may need a commode, bedpan or urinal. The district nurse should be able to arrange this. You can also buy these from pharmacies. Some commodes look like chairs and some have wheels.

Bathing equipment

The person you are caring for may also find having a bath or shower difficult. Using a bath chair, bath board or shower stool may help. An OT or physiotherapist will assess their needs and talk to you both about what bathing equipment would work best for your situation.

Breathing equipment

If the person you are caring for has breathing problems, their healthcare team can arrange equipment for them to use at home. This may include an oxygen cylinder or nebuliser, which gives medicines as a vapour to inhale.

Wheelchairs and walking aids

If the person has difficulty walking, a wheelchair, walking stick or walking frame can help. An OT or a member of the healthcare team should be able to arrange this.

Other equipment

There are many other smaller pieces of equipment that the person might need. These include two-handled mugs, an adjustable bed rest, bed raisers and grab rails. You can buy or hire these from shops and organisations. Or you may be able to get some equipment from your local pharmacy. Your pharmacist may also be able to tell you about local suppliers.

Some people may be able to get a Macmillan grant to help pay for equipment.

The person’s health and social care teams should be able to give you advice about how to get the equipment you need.

Carers UK has put together a list of equipment and adaptations that you may find helpful.

There are also lots of other organisations that provide equipment and advice on living with a disability.

If you have equipment that you don’t need anymore, contact the district nurse or OT. They can help with arrangements to send it back.


Home adaptations

Before the person you are caring for goes home, they may need to arrange some changes to their home. These can make life easier and more comfortable for them.

An OT can give you advice about the safety of the house and making minor changes. For example, you may need handrails in the bathroom, or need the bed moved downstairs.

Major changes might be possible too. These could involve putting in a toilet or shower downstairs, or installing a stair lift. But these can take several months of planning and may not be possible before the person comes home. They also involve building work, which can be disturbing. You will need to discuss whether you want to make these changes.

If the person you are caring for lives in a council or housing association house or flat, changes like these are usually paid for by the local authority. But this depends on local policy and the funds available.

If they own their home or rent it privately, they may still be able to get some financial help. Ask the OT, social worker or your local social services. You should make any claims for financial help before you start any building work.

Organising their room

It can help to get their room ready before they come home. Talk about which room they would prefer. If they cannot move around easily, they may want to be in the room nearest the bathroom.

If possible, position the bed so you can get around both sides of it. You could put a small table next to the bed, so they can keep some personal things nearby.

Ask them if there is anything they would like in the room. You could hang up their favourite pictures or photos. Or they may want a computer, TV or phone nearby.

If their room has, or is near, a gas appliance such as a gas heater, it’s a good idea to have a carbon monoxide detector fitted.

Sleeping arrangements

It is important that you get plenty of sleep and rest. If you are caring for your partner and usually share a bed, you could talk about whether this is still going to be comfortable for you both. Talk to your partner so you can both decide what is best.

Using technology

New technologies can help people living with cancer to be more independent. They can also help the people looking after them feel more supported and secure.

Telecare is a system that uses sensors placed around the home. These sensors can tell if there is a gas leak or fire, or if the front door has been left open. They can then send an alert to someone in a monitoring centre who can send help.

Telehealth is a similar system. It can send information from equipment, such as heart or blood pressure monitors, to someone in a monitoring centre. They can then pass it on to your GP or healthcare team. Telehealth can help with conditions such as asthma, heart failure, diabetes and high blood pressure.

To find out more about telehealth and telecare, go to carersuk.org

There are also mobile apps designed to help carers. My Organiser is a free Macmillan app that can help you plan and record things like appointment times, contact details and when to take medicines. Search ‘My Organiser’ on the Apple App Store or Google Play on your phone.

Jointly is an app that helps you be organised and feel supported as a carer.

I use telecare constantly. It’s amazing. It means I can go out to work and know that he can get help.

Sarifa

Back to Looking after someone with cancer

What is a carer?

A carer is someone who gives unpaid practical and emotional support to a person who could not manage without this help.

Managing everyday needs

You may need to help the person you are caring for with things like medicines. You can get support to help you with this.

Other care options

You may sometimes need a break from caring. Help is available to support you with looking after your loved one.

If you're a carer with cancer

Looking after someone while going through treatment yourself can be challenging. Support is available for carers.