1800-333-6666
(Hospice Helpline)
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| [ A guide to terminal care: supporting and protecting your loved ones ] 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. You could paint the walls of the patient’s room in cheerful colours like sunny yellow or sky blue. Decorating the walls with inspirational posters and quotes could also help in changing the patient’s perspective of his situation. In order to keep the patient’s mind active, opportunities for recreational activities should be present. Books, television and board games are just some examples that could help keep the patient entertained and occupied throughout the day. You should pay close attention to the preferences of the patient, as forcing activities upon the patient may result in resentment and anger towards you. If the patient’s condition requires a wheelchair or a walker for movement, such equipment should be purchased or rented at an early stage so that the patient need not feel overly dependent on you. Other medical equipment such as hospital beds or feeding tubes should be acquired based on the recommendation of the doctor. 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 through the use of a door bell system. The alarm-activating button can be placed next to the patient on a bedside table, and the alarm can be placed in a common area like the living room or the kitchen. With the use of this system, the patient can feel safe even when you are not present in the same room. You can also tend to other responsibilities without worrying too much. Create a daily caregiving schedule Being a home caregiver would mean 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 the housekeeping and the caregiving responsibilities. This huge amount of responsibility can take a toll on caregiver’s wellbeing, and can result in an unsatisfactory management of the patient’s needs. In order to keep the caregiving process a smooth one, it would be advisable to spend some time to plan a daily and weekly schedule. If it is not possible to have the responsibilities shared equally among two primary caregivers, then rest periods for the sole primary caregiver should be worked out. This can be done by asking another family member or hospice volunteers to provide respite care twice or thrice a week for a few hours. The important point is to work out a schedule that takes into consideration the wellbeing of the primary caregiver because caregiving is emotionally and physically draining. The caregiver’s health should not be compromised. Preparing food for the patient 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 should be taken into consideration when preparing food for the patient, along with health considerations that come with the illness of the patient. Healthy and tasty food should be served to the patient if possible in order to keep the morale of the patient high. If the patient has lost the ability to chew food items, then the diet of the patient would probably be reduced to a largely liquid diet. While the common choices for such patients would be broths, soups and porridge, such a repetitive menu can get boring and make the patient feel unhappy. Depending on the illness of the patient and the dietary instructions from the doctor, fruit-based blended smoothies or other uniquely flavoured liquid foods can also be an option for the patient. The serving of food to the patient should also be done in a sensitive manner. If the patient is only able to eat a small amount of food, it would be better to serve it on a small plate rather than a big one because the food portion would not look glaringly small on the plate. Small frequent meals may be easier for the patient to consume than regular large meals i.e. small quantities of food once in 3-4 hours may be more acceptable to the patient than normal quantities of food thrice a day.When the patient is on a non-solid diet, consumption of normal food in the same room as the patient should be done carefully, as the patient’s desire to consume food that he cannot have would be extremely frustrating. The types of cups, mugs and cutlery used should also be chosen with some thought. If the patient is alert and able to feed himself, using a heavy mug might cause spills and the weight of heavy cutlery can make the process of eating difficult. The ability of the patient to do things for himself and the limitations of these abilities should be considered seriously. Small things can make a big difference. While simply feeding the patient regardless of his abilities could be 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. Just moistening the patient's lips may be enough during the final phase of the patient's life. Personal hygiene Just like the process of feeding oneself, the ability to contribute to the act of bathing or clothing 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 become severely limited, the dangers of moving the patient to the bathroom becomes quite high. The option of using a washcloth on the patient while he lies or sits in bed may be exercised. Although the use of a washcloth is not as thorough as a bath, it is your responsibility to consider the high possibility of injuring the patient severely in a fall. If the patient insists on having a bath instead of being freshened up with a wash cloth, come to a compromise with the patient about using the washcloth for most of the days and having a bath once or twice a week. During these bath times, you can get the help of another family member or a hospice volunteer to 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 the decisions made. Ultimately, as a caregiver, support should not only be provided through physical means. The more important aspect of the support is emotional. The importance of always taking into consideration the patient’s wishes is paramount. What to do if the patient falls The deterioration of the patient’s condition happens over time, and changes will come gradually. One of the most important changes will be the loss of ability to walk without support. This change is most often discovered while the patient is walking, and will probably result in the patient falling down. It is important to not try to support the entire weight of the patient unless the patient is much smaller and lighter than the caregiver. In most cases, it would be good to support the back of the person and slowly lower him/her to the ground to rest. After calling for more people to help out, the patient can be moved or rolled onto a strong blanket and lifted with the blanket (like a stretcher) onto the bed. The reason for this approach is to reduce the chances of supporting the person’s weight awkwardly (hurting the caregiver or letting go of the patient accidentally). Awkward support and trying to move the patient back to the bed immediately may result in injuring the patient by knocking into furniture or through handling the body of the patient roughly. By giving the right support, these problems can be avoided. 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. Talking to the patient If the patient is in an alert state and is 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, taking the topic of death off the patient’s mind will be a good way to keep the patient upbeat. It is also good to 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 will not be 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, you should listen to the concerns and internal conflicts and be as supportive as possible. The topic should not be brushed off just because you are uncomfortable talking about it. Recognising the signs of approaching death The last hours of the dying is an intense one for caregivers and families. It is important that the loved ones of the patient are next to him in the final moments and offer comfort to both the patient and themselves. The following signs are indicators of approaching death:
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