Caring for someone with a terminal illness

Home adaptations, equipment supply and transport

Caring for a person at home until their death can require the use of specialised equipment including hospital beds, hoists, wheelchairs, commodes, walking aids, stair lifts, and medical equipment such as drip stands, oxygen and feeding equipment. Most of this equipment was provided to people free of charge although sometimes there was a small fee for the installation of stair lifts. Some bought their own smaller items, such as wheelchairs. Some people felt that the equipment took over the house particularly when they had tried out different pieces of equipment which were then not removed when they were no longer needed.

It is sometimes possible to get a grant towards making adaptations to the home or building extensions to accommodate equipment and to make the house more wheelchair friendly. People had mixed experiences of getting alterations done, some had been very successful and were done quickly; others had run into delays with getting planning permission and felt frustrated that they had been poorly advised.

Equipment was loaned from different sources including social services, hospices and some charities such as the Motor Neurone Disease Association and the Red Cross. Various professionals had advised people on equipment. Most people are entitled to an assessment by a social services occupational therapist or social worker who can advise on equipment. The Macmillan nurse had helped Henry to obtain equipment when his partner Jane was diagnosed with terminal cancer.
Many people found that eventually their relative required the use of a hospital bed which could have a special mattress and could be adjusted to different positions to make the person more comfortable. Sometimes people had to move furniture to accommodate the bed and other equipment or even use a room downstairs as a bedroom. Roger (Interview 32) found that it took a bit of trial and error to find the right mattress and his wife eventually went back to using their original one.
Occasionally people decided that they did not want to carry on using the hospital bed and had them removed. Cassie’s father stopped using the hospital bed in the last month of his life.

When mobility became an issue it was often necessary to have equipment such as hoists to help with lifting. This was particularly important because professional care workers are not allowed to lift anyone who is immobile without using a hoist.
Some people’s houses were too small for a hoist and while the patient was still reasonably mobile they could use a piece of equipment called a stand aid. However when lack of mobility became an issue it sometimes led people to decide to move the patient into a care home or hospice. Some people opted to continue lifting their friend or relative but found this very difficult if they were older themselves.

People who are dying sometimes use oxygen towards the end of life, or people with neurological conditions such as Motor Neurone Disease may need a ventilator. This requires the use of specialist equipment which can be noisy, although some people commented that it was possible to have the oxygen condenser in another room.

Removal of the equipment after the person had died was sometimes an issue. A few people had calls about equipment and warning letters about missed appointments after the person had died, which they found insensitive and upsetting.

Una’s husband’s equipment took up most of the room. After he died it was removed quickly but she still had enquiries about maintenance after his death.

Some people with limited mobility benefitted from obtaining a disabled parking permit (see ‘Financial  issues’) and others made use of a local ‘dial-a-ride’ service to transport the sick person to and from the hospital or hospice.

See 'Practical matters'

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Last reviewed December 2017.
Last updated September 2014.


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