Caring
for a loved one who is dying
Caring for the person who is dying isn't an easy task. It requires a caring, compassionate attitude, supported by practical skills. Caring for the dying can be a rewarding experience for Personal Carers.
It can be very satisfying for the Best of Care care giver to know that everything possible has been done for the dying person. It gives the family and friends a bit more comfort, to know their loved one is given constant time, concern and assistance.
Often for family members, it can be a lonely time due to the demands on time, mental strength, and patience, and especially when other family members may not be as supportive.
Death comes in many forms, sometimes so suddenly that no care is possible, sometimes it comes after a long illness. Most people, with whom we as paid carers become involved, are in the latter category. The person may come to know or suspect that they are dying and wish to live their last days in their own home. While their loved ones usually agree to this, there may be a high level of care required and without assistance it can be nearly impossible to give the person the level of nursing care that they may need.
If you are caring for someone who is dying:
1. Discuss feelings and fears about death with your Best of Care Co-ordinator. Her compassion and support can help you through the tough times.
2. Keep your patient comfortable, clean and hydrated. Ask for an increase in Personal Carer, Overnight, or Nursing support if you need extra assistance.
3. Call your Best of Care Co-ordinator whenever you feel you need help.
Feelings and fears about death
Many Personal Carers have experienced loss and grief in their own lives. Loss and the subsequent grief are the most common experiences we face. As we grow older more of our friends die and we come to realise our own mortality.
Grief is the reaction to our loss and the process by which we inwardly accept the reality of an event that has occurred. It is the process by which we fill the gap in our lives after a large part of our world has been lost.
Both the patient and their family members will start to grieve from the moment they are aware of the terminal diagnosis. Many feelings and fears will surface. Although much has been written about the stages of grief, it is important to remember that the way in which a person grieves is unique to that individual - there is no right or wrong way to grieve. Grief is a natural and a normal part of living and the feelings experienced will range from shock and disbelief to anger. Depression may also develop.
Working through stages of grief is hard, painful work and takes time. Not everyone will experience all these feelings: people cope in the way that is necessary for them in their world. Both the dying person and the people around them experience the feelings of grief. The Best of Care Personal Carer is sensitive to the needs of all members of the family and loved ones.
Coping with grief
If we understand the emotions of the dying person we can cope more easily with our own feelings, and we can better anticipate and meet the needs of that person. The first strong feeling for the person is likely to come immediately after he or she has been told or has realised that s/he is dying.
The
person may suffer shock and disbelief; "This cannot be happening
to me! The diagnosis must be wrong! The doctor does not know everything!"
Physical signs, fainting, pallor, nausea may accompany the shock. Gastric upsets, rapid pulse or even restlessness and confusion may follow. Sometimes the person may cry. This reaction may gradually be replaced by an awareness of the truth as the reality begins to penetrate the person's consciousness. They may feel sad, hopeless, and helpless.
They may become angry and blame themselves or others, if you want to bathe them, they may want to rest. If you leave them to rest they may say you are neglecting them. Their food may be too hot or too cold and not what they fancy. Why are they angry?
In effect, they are saying to you," It is all right for you, you are well, free and able to do what you want. I cannot and will never be able to do so again." They may start to bargain "If only I can live another six months, I will….". They may become very depressed, withdrawing into themself and not wanting to talk. You may even find them crying quietly.
The way you can best help them at this stage is to give them time to grieve. Sit quietly with them and let them talk if they wish to do so. The real secret to quality communication is to patiently embrace silence and savour it, for it is often in the silence that magic happens. The person may find help from a spiritual adviser.
Spiritual needs
The dying person not only has emotional and physical needs, but spiritual needs.
Many people find their religious beliefs are all important in their effort to get the strength and courage to face their own death with dignity. A feeling that the dying person may experience is acceptance of the inevitable. This feeling brings a sense of well-being and of peace. The spiritually aware person may seem more content and even try to comfort those around them.
Most dying people have three fears: fear of pain; fear of loneliness, and; fear of the moment of death. Fear of pain is very common. To help the patient it is important to see that they are kept clean and comfortable and that they receive medication on time, take note if the prescribed drugs are proving inadequate. Get extra help if you need it.
Fears of loneliness and of dying alone are also very real fears. Many people wait to die until someone is in the room with them, almost as if they hold on to life until they can die in the presence of another human being. Reassure the person that s/he will not be left alone.
Making the person comfortable
In addition to helping your loved one to cope with their fears and worries, you must also care or organise care for their physical wellbeing and comfort. Your aim is to make their last days as happy and relaxed as possible.
He or she must be kept clean, comfortable and free from pain. For as long as they are able they should continue to get out of bed, particularly to use the commode. Physical movement reduces the risk of pressure sores and gives the patient a little interest and variety. When the person becomes to ill to get out of bed, their position needs to be changed every two hours to prevent bedsores.
There are mattresses available for hire that gently change the pressure by shifting of pockets of air, and these are preferable to ripple mattresses. This means that the two-hourly position change is not required, and so the patient is not unnecesarily disturbed.
If the person is incontinent their skin should be dried and washed carefully and protective barrier cream applied. An incontinence pad or Kylie sheet may be useful. Mouth care will be necessary once the person is unable to clean their teeth. The person's appetite may be failing, so offer small appetising meals of a food that the person would like. It is essential that the person take adequate fluids - small frequent drinks are more easily tolerated than large ones.
Try and avoid a rigid timetable, be prepared to give the person a drink or something to eat during the night if they are awake and hungry or thirsty. Many people who are dying are not in pain, but those who are will need an appropriate pain-relieving drug. Such drugs are called analgesics, and they range from paracetamol to morphine. The Palliative Nurse can monitor the patient's requirements and liaise with the Doctor about a safe and appropriate pain management plan.
The Doctor determines the particular drug and the appropriate dosage, and it is important that doses are given on time. Painkillers may cause drowsiness and there is a delicate balance between keeping a person pain-free and reasonably alert. If the patient is restless and fails to sleep, or is completely "zonked out" the medicines prescribed can be modified.
Caring for the person after death
When it appears that the person is in their last hours, phone your Care Co-ordinator so you have support. You may have family members arriving at the home and others may need to be called. It can be a lot to deal with; your Care Co-ordinator can assist you to share the burden. The Palliative Nurse will be in attendance also for extra support.
When your loved one has passed, the funeral people can come at a time to suit you. There's no rush. If you want your loved one to remain at home for a while, that's totally acceptable. Sometimes you need that extra time.
It can vary depending on customs and cultures, and the circumstance of the death. If it is a death of a young one, the parents often want to hold their child. Many older people like to simply sit quietly with their loved one for a little while.
If you are a carer of a loved one who has passed away, you need to allow and accept any emotions you have. The feelings will vary from individual to individual. We can help you get through this difficult time. We understand.
You have the support from our team at Best of Care.
Call our understanding Care Co-ordinators on (03) 5272
3133 to find out how we can help you with palliative care.