Caring for someone with a terminal illness

Helping with personal care

People rarely make a conscious decision to become a carer; rather the role develops gradually as a natural extension of the relationship they already have with the person who has become ill. At first it may only involve, for instance, supporting them when attending medical appointments and making treatment decisions (see Other caring roles’), but as the illness progresses the role will gradually increase to include things of a more personal nature. The term ‘personal care’ refers to tasks such as' washing, dressing, shaving, cutting hair and nails, toileting, incontinence management, food preparation and help with eating, moving and lifting, and administering medication.
Meal preparation may seem like an everyday household task, but when someone’s illness or disability prevents them from preparing their own food, the responsibility for ensuring the sick person eats becomes part of the carer’s role. Some carers we spoke to said they’d always done all the household cooking, whereas others had increased the amount of food preparation they did or had to learn from scratch. It could be daunting trying to prepare enticing meals for someone who had been an excellent cook. Val arranged Meals on Wheels for her husband while she was at work.
Certain illnesses or treatments can affect appetite or limit the type of foods that can be digested. Several carers said that at times they had to serve only soft or pureed foods. Susan said that as her mother’s dementia advanced she found it easier to absorb hot drinks rather than cold. Some had to incorporate full fat foods or special protein drinks into the sick person’s diet to counter weight loss.
Some people ate one or more meals in bed each day. Heather’s husband eventually had all his meals in bed, which meant he was unable to socialise with mealtime visitors. Her meals were often interrupted when he demanded that his tray be removed while she was still eating. While some patients could still feed themselves, others needed to be fed with a spoon or drink through a straw. Laughing while eating could cause choking in those with swallowing difficulties, so had to be avoided. These difficulties can be overcome by having a percutaneous endoscopic gastrostomy (PEG) tube inserted, which allows foods, fluids and medicines to be introduced directly into the stomach.
For many people their caring role included helping to wash and or dress their sick friend or relative. Washing people with mobility problems was challenging if they couldn’t use the bathroom. Some washed their friend or relative’s hair over a basin or bowl. Lynne sometimes washed her mother with baby wipes. Heather used to get her husband up and dressed each day until this became too difficult and he stayed in bed.
Several carers said they had to help their sick friend or relative to get on and off the toilet or a commode, including at night. Sometimes it took two people to do this lifting. Heather’s husband still wanted her present in the bathroom when he had professional care workers helping him on the toilet. Peter said there had to always be someone at home in case his daughter needed the toilet. Fiona arranged for someone to sit with her mother while she went out but sometimes had to abandon her shopping to respond to a call from the sitter for help in getting her mother off the toilet.
Incontinence was a problem that some carers had to deal with, particularly towards the end of their relative or friend’s life. When patients wet the bed the additional laundry added to the carer’s workload. Savita’s husband had a urinary catheter fitted. Others used incontinence pads, although Susan’s mother, who had dementia, used to take them off.
Needing help with personal care, and particularly toileting, can be difficult for people to accept. Sue said her father became obstinate because he didn’t want anyone, particularly his family, doing this. Carers often found it awkward or embarrassing at first; some said they had got used to it (see ‘Changing roles and relationships’). Lynne didn’t like washing her mother’s private parts but said she couldn’t leave her dirty. Peter said that washing his daughter was ‘a very intimate thing, yet it was something that obviously comes naturally to parents’. Sue said that because her father had dementia he no longer seemed like the man she had known, so she was able to ‘switch off’ when attending to his personal care.
In addition to needing help getting to and from the toilet, people with limited mobility needed help to get in and out of bed and transfer from their bed to a chair. Some also needed to be lifted up or turned in bed to keep them comfortable, to prevent bed sores, or when sheets needed to be changed. Lifting and moving people is physically hard work especially where the patient is larger than the carer. Some carers had to summon help when the person they were caring for fell over and they couldn’t get them up on their own. As the level of disability increased people sought mobility aids and equipment to help them, such as wheelchairs, stairlifts and hoists. Although Bill used stairlifts, Una still had to help him transfer from one lift to another on the landing. Hoists were often loaned from social services or charities such as the Motor Neurone Disease Association. Hoists can take up a lot of space and not everyone who needed one could fit it in their home.
Some carers also helped their friend or relative to take exercise to prevent them from becoming bed or chair bound or to help them recover from a long hospital stay. Peter’s daughter was visited at home by a physiotherapist every fortnight but Peter felt this wasn’t often enough so he helped his daughter to do the exercises three times a day.
Many carers also had to take responsibility for ordering, collecting and administering medication to their friend or relative. Cassie was frightened of making mistakes with medicines so used post-it notes and highlighter pens to remind her what to give when.


Last reviewed July 2014.

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