Being a caregiver in the home is physically and emotionally stressful. If you do decide to go ahead, you do not need to do it alone. Support is offered by the health care team in your area and by family and friends, with you as a key member of the team. This team helps provide care for the physical, emotional, psychological and spiritual needs of your loved one. In helping everyone cope with issues and stages of the dying process, the team eases this final journey of life.

Your time together

When you are giving care at home, you and your loved one may be able to support one another. Take comfort from special moments. Take your cues from how the sick person is feeling. Sometimes sharing hopes, thoughts and feelings can comfort you both. Enjoy the good days and make the best of your time together.
This can be a good time for the whole family to be together, remembering the important things in your lives. It may help you all adjust to what is happening. You may find pleasure in talking, listening to music, watching television, or playing cards or games.

Everyone, sick or well, should be treated with honesty. Be truthful, especially when you or your loved one is doing poorly. Respect the privacy of the sick person. Allow your loved one as much control as possible when making decisions about care and activities. If you offer advice, do not be offended if it is ignored.

These days offer a chance for you and your loved one to come to peace about the past and the future. Try to resolve any conflicts or unfinished business you might have. If this is difficult, perhaps a third person can help both of you come to an understanding. Help put affairs in order. Settling the estate can help you both to prepare. This is a good time to check that your loved one’s will is up to date and easily accessible.

Support networks

Caring for a dying person is not easy. It requires a team of people with different skills and ideas. This network includes informal support from family and friends and formal support from the health care team. Remember you cannot provide all the answers, solve all the problems or provide all the care. Accept help from others.

Informal support

To organize your informal support group, identify who may be willing or has offered to help. Sometimes help can come from unexpected sources. Recognize that some family and friends whom you expect to help may not want to become involved. Talk to family, friends and neighbours. Members from your social organizations or faith community may step forward, as may your minister, priest, or other religious or spiritual advisers.

Make a list of what you need done and post it prominently. Most people are willing to help with laundry, shopping, meals, house and yard work. If you need a sounding board, find those willing to listen. Some people might prefer to stay with your loved one while you take a break. If you are not up to driving, others might pick up prescriptions or drive to appointments.

Caring for yourself, the caregiver

Caring for your loved one can be rewarding, but it can also be physically and emotionally draining. It is hard to predict how long you will be providing care. If you are going to keep giving to others, you must take care of yourself.

Keeping healthy

When you first start to care for your loved one at home, you may be tempted to meet the needs of everyone around you. Some of the following common sense ideas may ease your workload and help you care for yourself.

When you need help, rely on your team to prepare proper meals for your family so you can eat on a regular schedule. Prepare double portions so you have a second meal in the freezer. Healthy snacks, such as fruit or cheese and whole grain crackers, can stand in during times when you are busy but need to eat.

Make time for a regular schedule of exercise. This may be fitted into a break when a friend stays with the ill person. If you are tired, sleep when the person sleeps. Someone might relieve you so you can have an unbroken eight hours of rest.
Do not fret if household chores are not done to your usual standard. Help with heavy work like vacuuming and laundry may be available through home care or other community services. Talk with your home care team. Call on your support network for help when the load seems too heavy. Keep important family routines and let others go for a while.

Coping skills

For some people, providing care intensifies love for the dying person. Some feel increased inner strength and resolve. Feelings of sadness, anger, fear and anxiety are also normal in times of stress. Remember there is no right way to feel at this time.

Set realistic goals for yourself and the amount you are able to do. Big problems seem smaller if you work them through one step at a time.

Set aside special time for other loved ones in your life, even if it means scheduling it into your day. Remember everyone is on edge and trying to cope. Try to see things from their point of view when tense situations arise. Step away from situations when you feel your frustration rising, so you do not say something you regret in the heat of the moment.

Find ways to blow off steam. Try vigorous exercise or pounding a pillow – anything that relieves tension. If you need to get something off your chest, talk to someone on your team. In a support group, you can talk with others who have been in your position, understand your needs and can suggest appropriate strategies. Your home care nurse can tell you about local groups and counselling if you think it would help. Consider talking to your spiritual or religious adviser.
Cry if it helps. It is a normal reaction and a good way of coping. Also, laugh without feeling guilty. Laughing is a good way to release tension.

Respite care

Respite means ‘rest.’ You may need a break from the responsibilities of being a caregiver. Take a break when you have the chance, and do not feel guilty about it. Breaks can help you feel refreshed and better able to cope whether you are able to leave home or not. The length of the break depends how comfortable you feel being away. Ask a friend or family member to care for your loved one in your absence. Your home care team may be able to have your loved one admitted into a long-term care setting or hospice for a short time to allow you to rest. Sometimes just a few hours for yourself are all you need to keep going.

Formal support

Your formal support network is more structured. The support and services provided depend on what is available where you live. They may include a family doctor willing to visit your home. Other members of the home care team include a home care nurse, occupational therapist, physiotherapist, social worker, and respiratory therapist. Personal care workers provide care and give caregivers a break. Your pharmacist may deliver medications to your home. Dietitians can give advice about good nutrition and or help with eating concerns. Many community agencies offer useful services from volunteers or for a fee. These include meals, house cleaning, grocery shopping, shovelling walks or mowing the lawn.
Having helpers in the home always takes some adjustment. It may take time for your family to get used to visits, even from members of your health care team. If your loved one resists help from others, explain that you need help and would like to try the service.

Support networks are there to help you and your loved one. Do not try to do everything yourself.

Communication

Family - Communication involves talking, listening or simply being with a person. Remember that touching, holding, hugging and caressing are also ways to express acceptance and caring.

This may be a chance to enrich your relationships with both your loved one and other family members. It is a chance to confide fears and hopes rather than trying to hide them. Do not try to ‘spare’ children from knowing that a loved one is dying. Give children opportunities to ask questions about a life-threatening illness and to express their feelings.

Health care team - You will be in regular communication with members of the health care team. Try to deal with several concerns in each contact. Think about what you need to know and who might be the best person to help. List questions and concerns as they occur and have them in front of you when you talk with the team. Note questions your loved one has, even those mentioned in casual conversation. When it is time to ask questions, either record the answers yourself or have someone with you to do it. Make sure you understand the advice you are given and if you need to, ask questions to clarify. Later, if you are unsure or cannot remember, you can go over what you have recorded.

Tell a member of the health care team about new pains or symptoms immediately so these can be dealt with as soon as possible. The doctor should know about any medical or complementary therapies your loved one is using. This is extremely important. If the doctor does not know about all the therapies, an interaction between them could result in serious side effects.

Once a decision on treatment is mutually decided, follow the advice. Remember you can ask to discuss the choices you have made at any time. Any final decision about care should rest in the hands of the dying person.

Visitors - When those outside the immediate family know someone is dying, they often want the chance to spend some final time visiting. Encourage visitors to phone first so you can tell them whether it is a good time. If people just stop by, use a sign on your front door to indicate when you do not want visitors.

Your guide as to the number of visitors and their length of stay can come from how tiring visits are for the ill person. Give visitors a time limit in advance and ask them to visit less during periods when the person seems to tire more easily. If talking causes breathlessness, suggest that visitors just sit quietly or talk in a way that does not require an answer.

During this time, family and friends may be unsure about what to do. They may wonder if they should visit at all, and for how long. When they do come, they are not sure what to talk about or whether to bring up the subject of death. They are uncertain if they should draw closer or pull away from their loved one. They wonder whether and when to say their goodbyes.

There are no right or wrong answers. Each situation is different. Sometimes it helps to take cues from the dying person. As a caregiver, you can only guide visitors according to what seems right at the time. Do whatever you feel is best ‘just in case’ death occurs sooner than expected.

Using a guest book to remember all who supported you and your loved one may be comforting when you look back later.

As you take care of someone with a terminal illness, you face one of the toughest but possibly most rewarding challenges of life. It is not going to be easy. Although you may not be able to stop your loved one from dying, you can help to make these last days more comfortable.

Hospice Care

Death is something we must all eventually face. Many people wish to spend their last days at home, but often it is not practical. In this situation, being cared for in a hospice is often appropriate.

Many people want to care for a dying family member. However, the type of care and the medication required can be too much for a family caregiver. In a hospice, family can stay involved and attentive, while being supported by a professional staff. This allows the family to spend quality time together, without being overwhelmed by the responsibility for all aspects of care.

Many people may not know what to expect of hospice care. A hospice is a ‘hospitable’ place where a dying person can spend their final days. The focus is not on curing illness, but rather on giving comfort. Care is centered on the patient and family. Families are supported so that they are able to cope during the last stages of their loved ones life. Medical care (often called palliative or end-of-life care) reduces physical symptoms such as pain and nausea, and lessens emotional suffering. Hospice care is as close to care at home as our medical system can provide.

Care is usually given in private rooms designed to be as homelike as possible. There are no set visiting hours. Family members can spend as much time as they wish with the dying person. Friends are welcome to visit.

While every hospice is somewhat different, all share common elements. Each hospice has a medical director and doctors specializing in palliative care. However, patients may continue to see their own doctor if they wish.

Most hospices have a team of health care providers to meet the physical, psychological, social, emotional and spiritual needs of both the dying person and the family. The interdisciplinary team includes nursing attendants, registered nurses, physicians, social workers, volunteers, cooks, laundry, housekeepers, dietary aides and for those who wish, spiritual support is available.

Meals are provided. Most hospices supply services like television, telephone and Internet, and libraries for both music and literature. Family accommodation for short stays may also be available.

Hospices are usually private facilities or combined with long term care. Most health regions find there is significant demand for hospice beds. Doctors and home care nurses often arrange admission to a hospice, using a central access point. Sometimes hospice care is offered in a hospital, with a section set aside for this type of care.

Many hospices service a specific health region. Hospices, hospitals, community health care and support services, and government agencies all work together. Residents usually only pay for needed medication and oxygen, just as they would if they were at home.

Deciding whether a hospice is the right setting for your family will depend on individual circumstances and needs. Hospices can give a high level of support and specialized care with expert symptom and pain management. Privacy and dignity are offered to all, with minimal medical interventions.

Cecily Saunders first stated the philosophy of hospice care for the terminally ill. She said, “You matter because you are. You matter to the last moment of your life and we will do all we can, not only to help you die peacefully but also to live until you die.”

Caring for a Loved One Dying at Home Deciding if it’s the right choice for you