Getting prepared when caring for someone with advanced cancer
There are a number of things you can do to prepare before the person you are going to be caring for leaves hospital. It can help to get these sorted out before they arrive, so when they do you can focus on caring for them.
Practical aids and equipment
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Before your relative or friend is discharged, it’s important for the hospital or hospice staff to talk to you both about any equipment you will need at home. They can arrange for an occupational therapist (OT) to visit and make an assessment of your home. The hospital or hospice may be able to supply some equipment a day or so before the person comes home, so that it’s ready as soon as they arrive.
Being comfortable in bed is particularly important for anyone who is seriously ill. They will probably spend a lot of time there, even if they aren’t completely bed-bound. The district nurse may be able to help by arranging for the loan of an adjustable bed, a pressure-relieving mattress, mattress pads or protective sheets, or a hospital bed. Once your relative or friend is home, you can ask the district nurse for advice on the best way of making them comfortable.
Try to provide lots of pillows of different shapes and sizes.
A V-shaped pillow is especially comfortable and can help to relieve pressure on the back. If the person has swollen arms or legs, extra pillows can be used to keep the affected limbs higher than the rest of the body.
Commodes, bedpans and urinals
If your relative or friend finds it difficult to get to and from the toilet, they may need a commode, bedpan or urinal. The community nurses should be able to arrange this.
You can also buy these from chemists or pharmacies. Some commodes are made to look like ordinary bedroom chairs.
If the person you’re caring for has breathing problems, their hospital doctor or GP should be able to arrange for special equipment such as oxygen cylinders and nebulisers to be provided at home.
Wheelchairs and walking aids
If your relative or friend has difficulty walking, the hospital staff, district nurse or physiotherapist should be able to arrange for a wheelchair, walking sticks or a walking frame (Zimmer frame).
If your relative or friend has a poor appetite or is having trouble eating, you may need to stock up with foods that they will enjoy. The hospital dietitian or ward nurses can give you advice and may be able to supply supplement drinks and foods.
There are many other smaller gadgets which you might be able to get from the OT. These include two-handled mugs, an adjustable bed rest, a bed raiser, a bidet bowl and grab rails.
If you can afford it, there are many shops and organisations that sell or hire out aids and equipment (look under ‘Disabled’ in the Yellow Pages). Your local chemist can tell you what is available.
Some equipment is available on loan from voluntary organisations and charities, such as the British Red Cross.
Your key worker should be able to give you advice about how to get hold of any equipment you may need.
There are some practical things you can do to get ready before your relative or friend arrives home.
You may need to make some changes - big or small - to your home, in order to make life easier for you both. For example, if the person you’re caring for needs to use a wheelchair, you may be able to have some doors widened and ramps built over steps.
An OT can advise you on the safety of the house’s layout and on making minor changes such as putting handrails on the stairs or in the bathroom, or moving a bed downstairs.
Major adaptations might be possible, such as putting in a toilet or shower downstairs, and installing a stair lift. These kinds of alterations can, however, take several months of planning and may not be possible before the person comes home. They also involve the disturbance of building work. You will need to discuss whether you’re prepared to go through this upheaval.
If you live in a council house or flat, adaptations are usually paid for by the local authority, although this varies from area to area and depends on local policy and the funds available.
If you own your home or rent it privately, you may still be able to get some financial help. Ask the OT, social worker, or your local social services (Social Services Department in England and Wales, Social Work Department in Scotland, or Health and Social Services Trust in Northern Ireland). Make sure you claim financial help before you get any work done.
Organising their room
One of the most important things to do is to get your relative or friend’s room ready. They’ll probably be spending a lot of time there so it’s important that they are happy in it and that it feels welcoming. Discuss which room they’d prefer and, if you live in a house, whether they would like to be upstairs or downstairs. Some people prefer to be downstairs because they feel less isolated. Others prefer the peace and quiet of an upstairs room. If they can’t get around easily, they may want to be in the room nearest the bathroom. They may also want to be in the lightest and sunniest room.
Put their bed or chair in a good position, preferably with a view out of a window. You could move a small table into the room, next to the bed, and if there’s space, add a chair for visitors.
Ask your relative or friend if there’s anything they’d like in the room to make it feel more homely - for example, you could hang up their favourite pictures or photos. They might like to have a radio, CD player, television with remote control or a DVD player if they’re available.
You may be able to have a phone extension put into the room, or use a cordless phone or mobile so that they can talk to family and friends more easily. If they won’t be able to get out of bed, you may be able to get an intercom, such as a two-way baby alarm, or walkie-talkie, so they can talk to you when you’re elsewhere in the house.
If you usually sleep in the same bed or room as the person you are caring for, you may need to discuss whether you want to continue to do this. It may be that, at least sometimes, you need to sleep separately so that you are not disturbed if your partner has broken nights. They may feel easier not having to worry about disturbing you. If you’re caring for them, you need to get plenty of sleep.
It can be difficult to sleep in separate rooms if you’re used to sharing. You may feel that you are abandoning them, or that they’ll think you don’t love them as much anymore. It’s important that you talk to each other so that you are both happy with the new arrangements.
Asking for help
Start to think about the kind of help you might need from your family, friends and neighbours. Build up a support network. You may not need their support right now, but if you find yourself in the middle of a crisis, you will want someone you can turn to and know how to get hold of quickly.
Not everyone will have family, friends and neighbours they can call upon for help. There are lots of other sources of practical help and support, whether you’re coping on your own or have a network of helpers.