Caring for the Terminally Ill

Basic Caregiving Skills

The basic goal of caring for a terminally ill person is to keep him comfortable, clean and contented. It is important to realize that his needs are not just physical but also emotional, mental and spiritual.

This is especially true when death approaches. We will deal mainly with the physical needs in this section.

Giving medications

As a caregiver, you'll probably be responsible for giving medications to your loved one. This can be as simple as giving him paracetamol (panadol) for fever or headache, or as complex as giving him a wide variety of medications at different times of the day.

If there are many types of medicine to give, it is important to learn as much as you can about each of the medicine that he needs to take. For example, what is each of the medicine for, how much to take, how frequent it should be taken, for how long and whether it should be taken before or after meals. Find out about its major side effects and whether it will interact with other drugs, supplements or vitamins.

One way to make it easy to remember the many types of medicine to give to your loved one is to write it all down in a form of a schedule. This way, even when you are not able to give him the medicine, you can assign someone else to do the job properly. Another method is to put the medicine in a divided container. You can get this at most pharmacies.

Remember that all medications must be given as prescribed by the doctor. Do not stop any medications on your own. Consult with your doctor if you are considering stopping any of the medications.

If your loved one has problem taking the medications, find out why. It may be he does not like the taste. In this case, if it is a pill, perhaps you can crush it and mix it with a pleasant tasting food such as pudding, yogurts or applesauce. Crushing the pill is also helpful if he has trouble swallowing it. Alternatively, ask your doctor or pharmacist whether you can get the same medicine in syrup or liquid form.

Sometimes, an ill person may refuse medications for emotional reasons, such as depression, or he may just want to assert a certain degree of control over his life. Calmly discussing the problem with your loved one may help you find a way to resolve it.

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Preparing a healthy diet

Ill people, particularly if they are bed ridden, often look forward to meal time. It provides them a chance to socialize and to break the monotony. However, some illnesses may cause them to lose appetite or make it difficult for them to eat or swallow.

It is important to provide a healthy diet in order to maintain your loved one's health and energy. Make mealtime enjoyable and something to look forward to. If there is no diet restriction from the doctor, give him the food he loves and enjoy. If there is a need to restrict certain food, however, it is best to follow the doctor's instruction. Remember also to provide adequate fluid intake of at least 2 liters per day.

If your loved one is losing weight, look for ways to add calories and nutrients to his diet. For example, give him fortified milk shakes. They can be both tasty and nutritious. If he has decreased appetite, you can increase his calories intake by serving him smaller portions but more frequent meals. It is also a good idea to leave healthy snacks such as fresh fruits, carrots, celery sticks on his bedside table. If he has difficulty chewing or swallowing, slice, dice, chop, mash or puree his food.

Whenever possible, eat your meal together with him. Mealtime rituals can be comforting and help restore a sense of normality to the life of a terminally ill person.

It is important to encourage your loved one to exercise as exercise helps stimulate appetite and prevent constipation. It also stimulates blood circulation and maintains muscle tone. Even if he is bedridden, he may be able to perform simple weight lifting, stretching and range-of-motion exercises on his own.

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Chewing and Swallowing

Proper oral care is essential in maintaining a healthy diet. Mouth ulcers, cavities, gingivitis (gum infections) or poor fitting dentures may make chewing or swallowing difficult. Thus, it is important to maintain good oral hygiene with daily brushing and flossing.

If for some reasons, your loved one cannot chew or swallow, he may be fed via alternate methods such as through a feeding tube inserted from the nose into his stomach or through intravenous feeding. In such circumstances, you should learn the proper method of feeding and maintaining the tube or drip-line. You should also learn to recognize sign of infections at insertion sites, especially for the intravenous drip, such as pain, redness or swelling.

If your loved one cannot feed himself, you will have to feed him. Cut the food into small, manageable pieces or puree it to make it easier to chew and swallow. Sit him in an upright position, tuck a napkin or a hand towel under his chin to catch any spills and taste the food first to make sure it is not too hot. Allow yourself a reasonable length of time to feed him. Do not rush his mealtime. Make it enjoyable for both of you. Mealtime can be an opportunity to get to know your loved one better.

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Hygiene

Hygiene is an important component of caregiving. If your loved one feels clean and fresh, it will boost his morale. Having a daily bath will also prevent bed sores. If he is bed ridden, it is still possible to bath him in bed. For detailed instructions on how to bathe an immobile person in bed, see the appendix under Bathing an immobile person in bed.

Your loved one should also be encouraged to brush his teeth twice a day as good oral hygiene will prevent oral ulcers, dental caries, gingivitis and candidiasis.

Men who shave should be encouraged to continue shaving. This will make him feel clean, refreshed and also boost his morale.

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Toilet Needs

If your loved one is bedridden, he will need extra help and attention with his toilet needs. He may feel awkward and embarrassed, more so if you feel embarrassed too. Try to be casual and always remember to respect his privacy when he needs it.

Using a Commode

A commode is a chair with a bedpan attached to its seat. If he is able to get out of bed, it is better to encourage him to use a commode. This not only allows him a degree of independence but also more privacy.

Bring the commode near the bed. Then assist him to the commode. Make sure he is seated comfortably before leaving him to complete his toilet needs. Do not rush him. Give him plenty of time. When he is done, ask him to call for you so that you can clean him up and assist him to his bed.

Using a Bedpan

If he is totally confined to bed, then it is necessary to use the bedpan. For a man, a handheld urinal would be adequate for him to pass urine. Note that he may be reluctant to ask for one, so ask him frequently whether he needs one. Always give him complete privacy and plenty of time.

To use the bedpan, start by propping him up in bed. Then, sprinkle powder on the rim of the bedpan to make it easier to slip it under the buttocks. Then roll him over to one side, put the bedpan on the mattress at the level of his buttocks and push it down as you roll him back. Help him to adjust the position of the bedpan until he is comfortable.

Again, give him plenty of time.

Tips: Keep the handheld urinal and the bedpan within easy reach for him.

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Symptoms to Monitor

As a caregiver, you are in the best position to observe any changes in your loved one on a daily basis. Here are some of the things you should look out for:

Mentality and Emotions

alertness, including sleep patterns
memory
emotional ups and downs, especially depression
agitation
irritability
anxiety
personal interaction with others

Physical

pain
breathing patterns
mobility, including any tremors, limb weakness or paralysis
vision and hearing
sensory response, for example to touch
weight loss
skin changes, ulcers, wound discharge
fever

Daily Activities

appetite and eating habits
bowel movements, especially constipation
urine output

Even small changes may indicate serious underlying problems, so consult your doctor if you are not sure.

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