7: Community Resources


Chapter 18: Finding Support in your Community

There are many community resources available to help people with a terminal or life-threatening illness and their families. The difficulty is knowing who to ask and what to ask for. One of the fastest ways to get the information you need is to talk to people who have gone through a similar situation recently.

The following organizations also have many services to offer and information to give you. Your local home care, hospice care and disease-specific organizations (e.g., Cancer Society, Heart and Stroke, public health department) are the best places to start. Listed below are their names, telephone number and Web addresses.

If you receive information by phone always have a list of questions written out and write any answers on the same sheet of paper including the name of the person providing the information. If you communicate by email or other electronic means, keep printed copies.



Home Care

Almost all communities have access to home care services through the local or provincial/state health boards or government departments. These programs may have various names but most health care professionals still use the term 'home care'.

Home care programs offer home nursing, homemakers and home care supplies free of charge plus other services. In small communities where there is no access to home care services, residents may find help through a local physician and/or nurses. Contact your provincial/state or territorial health departments or regional/national associations if you cannot find anything locally. Their number is in the Blue pages of your telephone book.

The Canadian Home Care Association

(613) 569-1585

www.cdnhomecare.on.ca

National Association for Home Care and Hospice

(202) 547-7424

www.nahc.org



Hospice Care

To locate hospice or palliative care groups in your community, check your telephone book first or your home care case manager. If you have trouble finding a group you can check with the national palliative/hospice care associations.

Canadian Hospice Palliative Care Association

1 (800) 668-2785

www.chpca.net

National Hospice Palliative Care Organization

(703) 837-1500

www.nhpco.org



Legal and Financial Aid

To help you with your legal and financial affairs you can hire your own lawyer or check into Legal Aid Clinics or Lawyer Referral Services in your community. Also, many not-for-profit organizations provide free or low cost income tax services.



National Health Care Organizations

There are many national and local organizations which provide patient and family information. To find their local branch address (if any) and telephone number, check in your telephone book, or at the library, your family physician or community health information center. If you live outside of an urban center you can call the Area Code + 5551212 to get the branch office in the city nearest you. If you have access to the Internet, use a browser such as www.google.com to get the information you need from their web site and/or to locate the services nearest you. Just type in the name of the health care condition and verify that you have found a site of a reputable registered organization. These organizations usually provide free information to patients and families.

For AIDS Committees

Check your local telephone directory or nearest urban center.

Bereavement support services (grief counseling)

Check your telephone directory.

Distress Lines

Check your local telephone book on the inside cover for distress lines that can provide information and support for adults and children.

Medical/Physical Aids

Check with your home care service, medical supply store and/or family doctor. Also some local disease-specific organizations or Red Cross branches loan out supplies.

Social Assistance

Check your Blue government pages of your telephone book for government departments that can provide some social assistance.


Chapter 19: Creating Your Own Support Circle/Team

June Callwood'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 neighbors 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 hospice program and others do not have hospice care 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 who is ill. Remember that a support team is only effective when the person with a terminal or life-threatening illness agrees with the idea and participates in making decisions.

Keep in mind that the support team idea can be used in many different ways. In this book I look at how to help someone with a terminal or life-threatening illness. 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. Let your imagination run wild with potential rather than with limitations.

I use the word friends to include family members and friends who do not live with the person who is ill, 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 who has a terminal or life-threatening illness. Freeing this responsibility from the closest loved one allows that loved one to concentrate on the person who is ill rather than on the day-to-day details of scheduling and answering phone calls. It also gives the person who is ill 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 neighbors. Neighbors are often willing to drop by with some food, help with running errands, cleaning up the outside (e.g., shoveling 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 neighbors 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 client 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 care - in 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 illness, to compare notes and feelings. Often the person who is ill 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 who is ill 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 humor (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/state 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 has another purpose. Even if only a few people write in it, it serves as a 'history' of the last weeks and months of someone's life. It can provide a history of the person's medical condition in the last months for new caregivers, family members or visitors who come often in the last days or weeks. After the death, parts of the logbook can become a family treasure to help them remember events, people, kindness and compassion.

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 behaviors. 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. We all have opinions and feelings about what a 'dignified death' is. Some people believe that people should be at home, classical music playing in the background, quilt on the bed, a dog or cat nearby, fresh flowers everywhere and the family and closest friends at the bedside. Other people prefer to go into hospital near the end of their lives to receive all the technological and emotional supports that round-the-clock hospital care can provide. Some people want to be alone while others want to have many people nearby. 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 do to 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 neighbors. 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.

If you are interested in this kind of friendship you may want to read some of the books or articles in the field of palliative care (see Reference section), attend some volunteer training workshops and talk to other people. Active participation is the best teacher but other ways of learning can also help you. You do not need to be trained to be helpful. However, you may enjoy some training to feel more comfortable with some aspects of supporting someone.

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 who is ill­not your own needs.

It is important to remember that the person who is ill 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 who is ill 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 other 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 or a meeting place with other friends.

The coordinator of a team is the focal point for a smooth running team. They act as the center 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 your anticipatory grief, examining past issues in your relationship with the person who is ill, 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 for 30 seconds using soap and warm water before and after any contact with the person who is ill to protect them and others. Do not visit when you have a contagious flu, cold or other illness. The person's immune system makes them more prone to infection than you are.

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 seriously ill. 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 or hospice care organization can give you information on training opportunities.

Spending time with someone who has a terminal or life-threatening illness is very rewarding and very traumatic. Friends must take care of themselves and each other as much as they try to help the client. People need to talk about their experiences. People need time to think about what they are experiencing. Take the time and make the effort. Having helped my parents and my grandfather live at home until their deaths are some of my richest experiences. I learned so much about them and so much about myself. I took the time to try to understand what I was thinking and feeling. There were many happy moments and many sad ones. The wealth of that experience will sustain me for the rest of my life. Enjoy the learning. Enjoy the giving. Enjoy the receiving.

For more information on palliative 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: http://www.thh.on.ca



Chapter 20

Using Your Experience to

Become A Neighborhood

Resource

At some point after you have cared for someone with a terminal or life-threatening illness, you might think about how you can help other people going through the same thing. There are several options:

Volunteer with a local hospice or hospital group that provides free help to patients at home, in hospital, in a freestanding hospice, in a long-term care facility or other institutions.

Become a neighborhood resource in caring for people at home. Use books such as this one and Caring for Loved Ones at Home, to provide your neighbors, families and friends with contact sheets of telephone numbers of local service providers. Encourage them to prepare for an upcoming illness or death by taking a home nursing course or similar program. Help them set up a neighborhood support team, if needed, for the person who is ill.

Your example helps neighbors and their families feel less intimidated by all the medical, social service and bureaucratic goings on that happen when someone is ill. The more educated you become the more your own family, friends and neighbors benefit. Knowing how to provide physical, emotional, spiritual and information support to people who have a terminal or life-threatening illness and their families is an invaluable gift you give to those around you.

As a neighborhood resource you are not trying to replace doctors, nurses, social workers, pharmacists or your community spiritual leaders. You are helping people work together to provide the best possible care in a specific situation.

Any and all of these activities help humanize dying within our communities. We help take away the emphasis that dying is as a medical failure to be dealt with in acute care hospitals. We return the emphasis to the hospice philosophy of care no matter where the care is provided. We re-introduce children and adolescents to the natural caring of their family, friends and neighbors. Everyone benefits from your leadership.

The skills you have developed together with information you will continue to learn can provide your neighbors, family and friends with the information and support they need regardless of the home care situation. For example, your information can help women just home from the hospital with their new baby. You can help people recovering from surgery. You can provide ideas to someone caring for a loved one with a chronic illness. Just offering to be a sounding board for questions can help you and your neighborhood develop even more into the kind of community you want to live in.

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