Caring for Loved Ones at Home

An Illustrated, Easy-to-Follow Guide to Short or Long-term Care 4th Edition.

15. Creating Your Own Support Team

June Calllwood's book Twelve Weeks in Spring tells the story of Margaret Frazer. In 1985 Margaret was dying of cancer and did not want to go into hospital or become involved in a formal palliative care program. June Callwood and other friends recruited close to 60 friends, acquaintances from Margaret's volunteer work, church, and other volunteers to help her stay at home until her death. They provided practical help as well as physical and emotional comforts. Margaret's doctor, Linda Rapson, was part of this 'support team' and provided the others with information to help Margaret stay as comfortable as possible. Near the end of Margaret's life this support team gave round-the-clock care and support.

From that experience several of Margaret's friends from the Church of the Holy Trinity and other volunteers established Trinity Home Hospice in Toronto to help people who wanted to keep as much control over their lives as possible through an informal hospice program. The volunteers at Trinity Home Hospice provide practical care and supports during weekly four-hour visits with someone who has a terminal or life-threatening illness. These volunteers are not trained medical staff (although some volunteers have professional backgrounds) nor is their purpose to replace home care and homemaker supports available through government health care. Their purpose is to provide the kind of practical help and emotional support that friends and good neighbours have provided for each other for generations.

Over the years, several Trinity Home Hospice staff have helped in preparing this information on support circles/teams. Beth Pelton, Elaine Hall, Blair Henry and June Galbraith have been particularly helpful about how people could design their own support teams to allow them the most control and flexibility when they had a terminal or life-threatening illness.

Not everyone wants to receive care through a formal program and others do not have adequate programs available to them. Developing a support team may be one alternative open to such people.

The following ideas are not in any specific order. You might use some or all of the following ideas to develop a support team. Take only those ideas that apply to you and change or add ideas that meet the specific needs of the person getting care. Remember that a support team is only effective when the person agrees with the idea and participates in making decisions.

Keep in mind that the support team idea can be used in many different ways. It can also be used for someone who has a chronic illness; for someone (old or young) living at home alone and needing extra help to stay in their own home; for a parent who wants some time away from the children once or twice a week; and for people who want to increase their circle of friends. In other words, do not be limited by the ideas presented here.

I use the word friends to include family members and friends who do not live with the person, as well as volunteers who over time will probably become friends of the person.

It helps to have one or two friends act as the coordinator(s) of the support team. This person is generally not the spouse or closest loved one. The coordinator is responsible for organizing everyone's schedule for visiting the person. Freeing this responsibility from the closest loved one allows that loved one to concentrate on the person rather than on the day-to-day details of scheduling and answering phone calls. It also gives the person and loved ones more time to relax, go out for walks, eat together quietly, and make plans for themselves and their family.

How do you recruit enough friends? How many do you need? Beth and Elaine suggested that a coordinator ask other friends for their help in visiting the client. As a coordinator (and not the patient or immediate family) people may feel freer to say no if they do not want to participate. In this way there are no hard feelings. People can be recruited from the family, friends and work colleagues who live in the area; people from clubs and organizations that the person belongs to (e.g., service clubs, volunteer work, veterans groups), and where the person worships. Another group that is often overlooked is neighbours. Neighbours are often willing to drop by with some food, help with running errands, cleaning up the outside (e.g., shovelling snow, mowing the lawn), or popping in early in the morning or late at night to help the person with getting up or going to bed. Friends, family and neighbours may also help with basic child care, help people get to appointments, bring someone over to their house for a change of pace and more. The more specific and time-limited the request, the more likely someone will say, "Oh sure. I can do that."

The number of friends one person might need depends completely on the person and family's needs. Some people only want and need the help of a few close people. Other people may need more help, especially near the end of an illness. Trinity Home Hospice often schedules people in the following way if a person needs round-the-clock carein weekly four-hour shifts. They find that this fits in well with other community supports to ensure seamless, 24-hour care for the person who is ill. The following is a general schedule. The shifts can actually be slightly longer or shorter depending on the circumstances and needs.

8 a.m.-12 p.m.

12 p.m.-4 p.m.

4 p.m.-8 p.m.

8 p.m.-8 a.m. (night visit by a friend if possible and necessary)

If a friend wishes to stay overnight, it works best if the friend brings their own linen or sleeping bag and often a change of clothes so that they can leave directly from the person's home to go to work or back to their own home to start the day.

If this schedule is followed it requires four people a day (other than the immediate family that lives with the person) or 28 people a week. Except for the night person, everyone commits to only a four-hour visit once every week. Of course, some people want to participate more often which cuts down on the number of people you need.

It is helpful for everyone on the team to have the monthly schedule and a list of all team members and their telephone numbers. Encourage team members to find their own replacements if they cannot make an appointment and let the coordinator know about any changes to the schedule. Such thoughtfulness can save hours of frustrating telephone calls and communication problems.

As well as visiting the person at home, friends often meet once a month, or more often depending on the need, to compare notes and feelings. Often the person getting care participates in these meetings or they may ask one of their family members to go. These meetings are held in the person's home or elsewhere depending on the person's wishes and the space available.

What qualifications must a friend have? A friend is there to provide emotional support, practical help and companionship and to lessen the fear and isolation of the person and their family. Trinity Home Hospice states some of their qualifications as follows: motivated to help without interfering; emotional maturity; tolerance for different social, cultural and religious beliefs; warmth, empathy, tact and discretion; flexibility; dependability; good listening skills; ability to work with others as a team member; different talents and skills (e.g., from past work experiences and hobbies); and a sense of humour (it is helpful not to take yourself too seriously). The key is to be there for the person and not to fulfill your own, unspoken needsto provide unconditional support and compassion.

Trinity Home Hospice recommends that clients use the services offered through the Home Care Program and homemaking services where available. These services depend on the area you live in and may include: visits by nurses, physio/occupational therapists, social workers; homemaker help (e.g., to cook some meals, do dishes, do shopping and some light cleaning); and overnight nursing if available.

A logbook is a helpful communication tool when more than a few people are involved in providing support at home. In this log book volunteers, professional caregivers (family doctor, visiting nurses) and family members write notes about the likes and dislikes of the patient and other information that needs to be passed on to different people. The person who is ill often reads the comments and adds comments of her own. Some people who are ill like the idea of a logbook and others do not, so check before hand. The book should also include information about what to do in an emergency, the person's provincial health care number, next of kin, medications, name and number of the coordinator, and name and number of family physician. If for some reason the person needs to go to the hospital the logbook can provide up-to-date information. The book must be kept in a very visible and easy to find place in the house. There should be a checklist of what to do in emergencies and at the time of death and who to call first, second, etc.

People writing in the book should begin with their name, date, time, and length of visit. In point form, you might write the person's activity level (conscious, unconscious); communication ability (recognizing, understanding, speaking coherently or not); eating during the visit; any pain or symptoms; their emotional state or mood (restless, peaceful, worried about...), any activities you did together or discussions you think others would benefit hearing about. Family members can add their own notes about what they heard the doctor or nurse say during their visit.

The logbook is also used to write questions that someone else can answer during a later visit as well as questions you want someone to ask the doctor or nurse during their next visit. There can also be questions or comments to people you know who will visit later such as, "Please make sure that Mom gets the herbal tea rather than the plain one", or "Please check the electric box to see if we need a new fuse for the kitchen", or "Please add the following items to the grocery list." You might also include a 'guest book' portion of the book where guests write in inspirational, spiritual, or funny thoughts or memories of times spent together, etc.

The logbook belongs to the patient and their family. Anyone may read it, so make your writing legible. Do not include confidential information or discussions that others do not need to see. If you include specifics of a conversation, ask the person for permission first.

Recognize that not everyone who wants to help the person will be accepted, for various reasons. If the person prefers not to have someone come to their home, the coordinator tells the person that the person's wishes are paramount and should not be taken personally. Some people do not 'click' and that is all right. That person might still participate indirectly by cooking some meals, answering phones, etc.

Recognize that whenever a few people get together there are tensions, misunderstandings and mistakes. People are doing their best but may do little things that annoy each other. Recognize these stresses and discuss them with others on a one-to-one basis or at general meetings if the problem goes beyond a few people. An example is people who enter the person's home without taking off their shoes. This custom is perfectly acceptable in most people's homes but unacceptable in other homes. Knowing these little things help make the experience more positive for everyone. The key is to remember that you are visiting someone's home where they are used to certain routines and behaviours. It is quite different from visiting that person in a hospital where their routines must blend in with the hospital's routines. You are a guest in the home.

It is sometimes difficult to draw the line between giving support and making decisions for the person. Regardless of your views and wishes, you must, as a friend, follow the wishes of the person as best you can. If you strongly disagree with a decision the person has made (on ethical or personal grounds) try to get another friend to be with the person. Call the coordinator to make different arrangements so that you do not have to do something against your strongly held beliefs. At the same time, the person does not have to give up control over their life to make you happy. This line between providing support and making decisions should be discussed at most general meetings to help remind people of this gentle, yet vital, balance.

If the person is ill for a long time there will be friends who come and go because of other commitments. When new people come it is difficult at first for them to fit into what has probably become a tightly knit group. For the person who may be more ill than when the team began, it is one more person coming into their life and home. Recognize some of the difficulties and provide extra support to both the person and new visitor.

Friends hear confidential information from the person who is ill and their family members. All this information is confidential and must not be repeated to anyone without permission. This includes one's own family and curious neighbours. The smaller one's community, the harder it is to keep information confidential. Confidentiality is a useful topic to discuss at a group meeting to ensure the patient's privacy.

Use the talents you have rather than try to learn many new ones. Find people who have the skills and interests you miss so that you can concentrate on giving your talents to the person. For example, you may enjoy reading and writing and can help the person with their mail or read a book with them. Someone else may help without being with the person who is ill. They may enjoy cooking, cleaning, gardening, walking the dog, or running errands without having to spend time with the person. Other people may enjoy helping the person eat their food, doing arts and crafts together, or doing bookkeeping, financial or legal work together (or alone). Still others may enjoy helping the person bathe or go to the bathroom. 'Being there' is also a wonderful gift. Sometimes people don't want to talk, listen or do things. They want to rest, think, pray or daydream. Being there means that you do not interrupt but give the privacy or companionship the person wants.

People who have a cold, flu or infection should not visit the person until they feel better themselves. You do not want to pass on an illness to the person.

At the first meeting of a Trinity Home Hospice Care Team, several key points are highlighted for team members, including:

Remember that your purpose is to meet the needs of the person you are visiting, not your own needs.

It is important to remember that the person needs to be able to give as well as receive.

Continuity of care is very important in functioning teams. We need to act as a team, not a group of individuals. To lessen the disruption to the person and their household, the delivery and standard of care should be as even as possible. We can bring our individuality to the team while acting as a single unit.

If in your professional life you are a nurse or health care provider, you need to be aware that in this volunteer situation you have a different role to play. Your skills (personal and professional) are an asset to the team but they need to be complimentary to your role as a volunteer.

A care team requires committed and responsible team members to make it work.

Incorporate this into your life and give it priority in a way that fits in with your other priorities, e.g., family and work.

When you make a commitment, stick to it.

Know your capabilities and respect your limits.

Use others on the team for support.

Confidentiality is critical.

Respect the person's home. It is not just a place of caregiving but their home. This experience is disruptive enough without turning their home into a hospital.

The coordinator of a team is the focal point for a smooth running team. They act as the centre point for information from the person who is ill and all the care providers. This person is the key contact to relieve the burden from the person who is ill and their immediate family. If the team needs to know something quickly, the person only needs to call the coordinator. Team members needing help or advice can look to the team coordinator for this support.

Care team member roles may include:

Remind the person to take their medication.

Assist with meals.

Be a good listener (non-judgmental and patient).

Understand the difference between being a friend versus a caregiver. As a friend you may challenge your friend about specific issues or concerns; as a caregiver you need to be there as a helper and supporter.

Help to keep the household running smoothly.

Help with taking care of young children.

Help with running errands.

Take the person to appointments.

Respect the privacy of, and give support to, the primary caregiver.

Make sure the person is safe.

Provide care and comfort.

In the event that you need emergency support while you are on your shift, a list of telephone numbers are supplied to each team member (see the logbook). Remember that you are not alone. You are part of a team; help and support are often just a phone call away.

To minimize caregiver stress:

Be realistic about your time commitments.

Use the logbook, phone contacts and attendance at meetings to feel supported and improve communication.

Attend training programs in your community that may help now and in the future.

Discuss and deal with your own difficult issues, such as coping with balancing your support with home and work commitments, examining past issues in your relationship with the person, dealing with anger or answering ethical questions.

Be mindful of basic infection control to protect the person who is ill and yourself. Wash your hands thoroughly.

It is important to keep your commitment to do a shift. Arriving 10 minutes early will enable you to overlap with the previous caregiver. Try to stay 10 minutes longer at the end of your visit. If you need to change your shift, arrange a swap with another team member. Once the swap is arranged, call and have it noted in the logbook at the person's home. Make sure the person and the team coordinator know about the swap. If you cannot arrange a swap, contact the team coordinator for help.

Unplanned visits, drop-ins and frequent phone calls can make the home environment seem very chaotic. Energy conservation is an important consideration when someone is ill or recovering. If the situation at the home becomes too hectic, suggest scheduling visits from family and friends and encourage people to have shorter visits when necessary.

Consider specific training in areas where you feel less comfortable. This is especially helpful when assisting someone to move about, transferring them from their bed to a chair, or with personal care. Your local home care organization can give you information on training opportunities.

For more information on care support teams write or call Trinity Home Hospice: 25 King Street West, Commerce Court North, Suite 1102, Box 324, Commerce Court Postal Station, Toronto, Ontario, M5L 1G3. (416) 364-1666. Their Web site:

You may also want to check your phone book to see if you have a local Citizen Advocacy organization in your area. Citizen Advocacy groups have extensive experience helping people who are ill, disabled, vulnerable or marginalized by bringing together community members who want to help others in practical and compassionate ways as friends. According to Cecile Lynes, Co-ordinator of Toronto Citizen Advocacy, "citizen advocates are ordinary community people who are recruited specifically for a person we know who is isolated, marginalized and vulnerable for any number of reasons. Citizen advocates learn by listening to the stories of their vulnerable friends, by walking in their shoes, by experiencing for a time what life is like where their friends live or work or spend time". For more information about Citizen Advocacy, contact the author.

Many disease or condition-specific organizations also provide different kinds of supports (e.g., cancer societies, Red Cross, Meals on Wheels, friendly visiting services, community agencies and private home care agencies). Check your local telephone book or your home care case manager for more information. The section Finding Out About Local Home and Health Care Programs also has helpful information for you.

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Copyright © 1996, 1999, 2002, 2006 Harry van Bommel

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