Supporting and Protecting Your Loved Ones

• Set Up the Living Area
• Create a Caregiving Schedule
• Preparing the Patient’s Food
• Personal Hygiene
• When the Patient Falls
• Talking to the Patient
• Recognising the Signs of Approaching Death

Set Up the Living Area

It is terrifying to know that one is approaching death. More often than not, patients have difficulties accepting this fact. Most become moody and upset with everyone around them. It is therefore important to put the patient in a bright and positive environment to surround him with cheer and happiness; and to keep his mind occupied and entertained throughout the day.

Hospitals have an emergency call button that is placed in easy access of patients so that they can call for help any time. This idea can be applied at home so that the patient can feel safe even when you are not in the same room, and you can tend to other responsibilities without too much worry.

• Paint the patient’s room in cheerful colours (eg. sunny yellow or sky blue).

• Decorating the walls with inspirational posters and quotes. This may help change the patient’s perspective of his situation.
• Make opportunities for recreation (eg. with books, television and board games) accessible to keep
  the patient’s mind active throughout the day. Pay close attention to the patient’s preferences because forcing activities upon him may create resentment and anger towards you.
• If the patient needs a wheelchair or a walker to move around, buy or rent the equipment early on
  so that the patient need not feel helpless and overly dependent on you.
• If the patient’s doctor recommends so, other medical equipment (eg. hospital beds, feeding tubes, etc) should be bought.
• Use a door bell system to set up an emergency call system. Place the alarm-activation button on a bedside table next to the patient, and the alarm in a common area (eg. living room or kitchen).

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Create a Caregiving Schedule

Caring for the patient at home means that the responsibilities fall on one or two persons. Many tasks need to be managed along with taking care of the patient’s needs. The most common situation is one where the primary caregiver manages both housekeeping and caregiving responsibilities. This huge amount of responsibility can take a toll on the caregiver’s wellbeing, and can result in unsatisfactory management of the patient’s needs. Because caregiving is emotionally and physically draining, the caregiver’s health and wellbeing should be taken care of and not compromised.

• Spend some time to plan a daily and weekly schedule. This will help smoothen the caregiving process. Remember to schedule rest periods, especially if you are the sole primary caregiver.

• If you are the sole primary caregiver, ask another family member or hospice volunteers to provide respite care twice or thrice a week for a few hours.

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Preparing the Patient’s Food

Patients who are in a condition to chew and swallow most food items might wish to savour the tastes of their favourite foods. This desire, along with health considerations that come with the patient’s illness, should be considered when preparing the patient’s food. If possible, healthy and tasty foods should be served to the patient to help keep his morale high.

If the patient has lost the ability to chew food items, then his diet would probably be largely reduced to a liquid diet. The common choices for such patients are broths, soups and porridge, but a repetitive menu can get boring and make the patient feel unhappy. Depending on the patient’s illness and his doctor’s dietary instructions, fruit-based blended smoothies or other uniquely-flavoured liquid foods offer interesting options to the patient.

Be sensitive when serving food to the patient.

• If the patient can only eat small amounts of food, serve it on a small plate (not a big plate) so that
  the food portion does not look glaringly small on the plate.

• Small frequent meals may be easier for the patient to consume than regular large meals (eg. small quantities of food once every 3-4 hours rather than normal quantities of food thrice a day).
• If the patient is on a liquid diet, his desire to eat foods that he cannot have can be extremely frustrating. Consuming normal foods in the same room as the patient should be done carefully, or avoided
  wherever possible.
• Consider the patient’s ability to do things for himself and the limitations of these abilities when
  choosing his cups, mugs and cutlery. A heavy mug can cause spills, and heavy cutlery can make the eating process difficult.
• While simply feeding the patient regardless of his abilities offers the easy way out, letting the patient
  do things on his own can raise his self confidence.

As the patient moves towards the final stage of his life, he may lose interest in food and not want to eat. As the different organs of the body also start shutting down, the need for food will also decrease. Caregivers must be aware of this and should not try to force feed the patient when he is not able to eat. Simply moistening the
patient's lips may be enough during the final phase of his life.

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Personal Hygiene

Just like the process of feeding oneself, the ability to contribute to the act of bathing or clothing oneself would reinforce the patient’s feeling of self-worth. As far as possible, the patient should be encouraged to participate in these activities, even if you do most of the work.

If the patient reaches a stage of illness where motor skills are severely limited, the dangers of moving the patient to the bathroom becomes quite high.

• Use a washcloth on the patient while he lies or sits in bed. This is not as thorough as a bath,
  but you must consider the high possibility of severely injuring the patient in a fall.

• If the patient insists on having a bath, come to a compromise with him about using the washcloth
  for most days and having a bath once or twice a week.
• During these bath times, you can get another family member or a hospice volunteer to help move the patient to the bathroom and back safely.

While this compromise may add additional work to your workload, it will allow the patient to feel like he has some control over decisions. Ultimately, as a caregiver, support should be provided not only through physical means, but, more importantly, through emotional means. Constant consideration of the patient’s wishes is paramount.

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When the Patient Falls

The deterioration of the patient’s condition happens gradually, over time. One of the most important changes will be the loss of ability to walk without support. This change is most often discovered when the patient falls while walking. When this happens, awkward support of the patient’s weight and attempts to move the patient back to bed immediately may injure the patient and caregiver. The patient may get handled roughly, knocked into furniture or dropped. The caregiver may also get hurt. These problems can be avoided with the right support.

• Do not try to support the patient’s entire weight unless he is much smaller and lighter than you.

• In most cases, it would be good to support the patient’s back and slowly lower him to the ground to rest.
• Call for more people to help move or roll the patient onto a strong blanket (which acts as a stretcher) to lift him onto the bed.

Hospices run regular training programs for family caregivers to learn how to manage such situations, and moving a patient from the bed to a wheelchair. Handling a weak patient is a delicate task and training will go a long way in helping you become confident about managing the patient.

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Talking to the Patient

If the patient is in an alert state and able to engage in recreational activities, topics of conversation need not revolve around death since there will be other things to centre the conversation on. At this point, caregivers
should keep the patient upbeat.

• Take the topic of death off the patient’s mind.

• Encourage and listen to the patient to talk about his experiences.

As the patient moves closer to death and becomes less active, he may become more focused on the fact that he is dying. In this case, it is not appropriate to prevent the patient from thinking about death. The issue of dying is a difficult one that will become more complex if left unresolved. If and when the patient wishes to speak about dying, do not brush the topic off just because you are uncomfortable talking about it.

• Listen to his concerns and internal conflicts.

• Be as supportive as possible.

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Recognising the Signs of Approaching Death

The last hours of the dying are intense for caregivers and families. It is important that the patient’s loved ones are next to him in the final moments, and that the patient and his loved ones are offered comfort. Signs of approaching death include:

• decreased physical activity

• lack of awareness of surroundings
• less communication
• lowering of body temperature
• lowering of blood pressure
• coldness in the hands and feet
• dulling of the skin colour
• change in breathing pattern from consistent inhalations and exhalations to a series of rapid
  inhalations and exhalations, and a period of no respiration
• fingernails turning bluish

When the patient ceases to communicate with the surrounding people, it does not mean that the patient is no longer aware of the surroundings. One of the last senses to go in the process of dying is the sense of hearing. Offering comfort to the patient verbally may possibly soothe the dying person’s mind.

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