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Being a caregiver in the home can be physically and emotionally stressful. However, if you 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 the physical, emotional, psychological and spiritual needs of your loved one. They can help everyone involved cope with the issues and stages of the dying process, helping to make the best experience possible out of this final journey of life.
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 give comfort to you both. Enjoy the good days and make the best of your times 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 spending time talking, listening to music, watching television, playing cards or games.
Everyone, whether 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 as much control as possible when making decisions about care and activities. If you offer advice, do not take offence if it is ignored.
These days offer a chance for you and your loved one to develop peace of mind about both 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 the person 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.
The care of 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.
To organize your informal support group, identify who may be willing or has offered to help. Sometimes help can come from unexpected sources. Be prepared for the possibility that some family and friends whom you expect will help do not want to become involved. Ask family, friends and neighbours for help. Members from your social organizations or faith community often 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, making meals, housework, and yard work. If you need a sounding board, find those willing to listen. Some people might prefer to sit with your loved one while you take a break. If you don’t feel up to driving, someone could pick up a prescription or drive you to an appointment.
Your formal support network is more structured. The type of 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. Often your pharmacist will deliver medications to your home. Dietitians are available to give advice when you have questions about good nutrition. Many community agencies offer useful services from volunteers or for a fee. These include meals, house cleaning, grocery shopping, shoveling walks or mowing the lawn.
Having helpers in the home always takes some adjustment. Even visits from members of the health care team such as nurses or personal care workers takes some getting used to by all the family. If your loved one is resisting 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.
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 your 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 health care team. Note questions your loved one has, even those mentioned in casual conversation. When it is time to ask the 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 your recorded answers.
Tell a member of the health care team about new pains or symptoms immediately so they get attention as soon as possible. The doctor should know about other medical or complementary therapies your loved one is using. This is extremely important since there may be 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. Tell visitors the time limit in advance and ask them to visit less if there are 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 wonder if they should visit at all, and for how long. When they do come, they are not sure what to talk about and wonder whether or not 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. Do whatever you feel is best ‘just in case’ death occurs sooner than expected. As a caregiver you can only guide visitors according to what seems right at the time.
When you look back, you may get comfort if you have used a guest book to remember all who supported you and your loved one during this time.
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 make sure that you take care of yourself.
Keeping healthy – When you first start to care for your loved one at home, there may be a temptation to feel you must meet the needs of everyone around you. Some common sense ideas for easing the workload and caring for yourself tend to be overlooked.
When you need help, rely on your team to prepare proper meals for your family and eat on a regular schedule. Prepare double portions when you cook so you have a second meal in the freezer. Healthy snacks such as fruit or cheese and whole grain crackers can be stand-ins for those times you are very busy but need to eat.
Make time for a regular schedule of exercise. Perhaps this can be fitted into a break when a friend sits with the ill person. If you are tired, plan to sleep when the person sleeps. Someone might relieve you so you can have an unbroken eight hours of sleep.
Do not fret if household chores are not done to your usual standard. Help with heavy work such as vacuuming and laundry may be available through home care or other community services. Ask your home care nurse. Call on your team to help when the load seems too heavy. Keep the important family routines and let the others go for a while.
Coping skills – For some people, providing care intensifies the love for the dying person. Sometimes there is a feeling of 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 for 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 the other loved ones in your life, even if it means scheduling it into your day. Remember others are on edge and also trying to cope. Try to see things from their point of view when tense situations arise. Step away from a situation when you feel your frustration rising so you do not say something in the heat of the moment.
Find ways to blow off steam. Try vigorous exercise or pounding a pillow-anything that works to relieve the tension. If you need to get something off your chest, talk to someone on your team. Support groups where you can talk with others who have been in your position and understand your feelings often help. Your home care nurse can tell you about local groups and about counselling if you think it would help. Consider seeking the help of 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 of releasing tension.
Respite care – Respite means ‘rest.’ You need a break from the responsibilities of being a caregiver. Take time for 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 nurse 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 a few hours of your own is all you need to keep going.
Some hospices provide day programs where your loved one can spend a few hours one or more days a week. This helps both of you to have a break. Another possibility from a hospice is a volunteer who will go into your home for a few hours to give you a break. You can usually contact a local hospice directly.
As you take care of someone with a terminal illness, you are facing 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 the last days more comfortable.
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