We are a group of people who came together to form a support system for a friend with AIDS and for ourselves. Some of us didn't know each other at the outset. Some of us joined the group at different points. The group continues to go through changes, just as the group members' needs and our ill friend's needs change. To make things easier we will use the name Jon to refer to our friend.
As the ranks of people with AIDS and HIV-related conditions grow, we see the need to share our experiences. We want you to know specifically what has worked for us and the issues that need to be addressed both within the group and with the PWA (Person With AIDS). In doing this we hope to encourage the kind of healing that such a support group can provide. Every group of people is different and each situation and illness is different. Our hope is that you take from this all that is truly helpful, customising what fits your particular needs.
Just a short time ago, people with AIDS were not expected to live much longer than 18 months. With the advent of AZT, Pentamidine and other new drugs now used prophylactically and for treatment, it is encouraging to know that PWAs are living much longer. AIDS is now being recognised as a serious chronic illness rather than a terminal one. Although the support group and this article focus on AIDS, we hope that it will be just as helpful to people who are trying to support loved ones with other chronic and life threatening illnesses.
The reasons for having a support group are many. One is to provide practical support services (cooking, cleaning, errands, etc) that may be necessary due to the PWA's diminished physical abilities. Another is to provide caring, emotional support for the PWA as well as emotional support for the friends of the PWA involved in the group. Forming a group helps share the responsibility for this support among several people rather than just one or two. Ongoing, quality support for the PWA is more likely to happen in this type of group setting.
From the list, choose the people you want in the group. Some factors to consider in selecting these people are how their personalities might work together and their attitudes about AIDS, your lifestyle and the lifestyles of others in the group, as well as how close to you they live.
Deciding how emotionally available (or how much of a counsellor) the PWA wants to be, will be very important at this juncture. The PWA needs to be careful to create a group of people who want to be there freely, not out of any sense of guilt or obligation. There are likely to be some pretty bumpy times ahead and keeping the group effective during those times will require that members give of themselves out of love, pure and simple.
For this reason alone, having a close friend doing the inviting might be the best way to allow people to say, "no, thank you." Be prepared for this. Don't use this occasion to test your friends' loyalty. Someone may love the PWA dearly and be willing to devote lots of time to their support, but may be squeamish about group situations or unwilling to formalise their level of commitment. Regardless, it is essential that potential members are encouraged to be totally honest and have permission to respond negatively if that is how they feel.
Have some food at the meeting. As long as the food is not the main focus of attention, eating together can be a great way of establishing bonds.
Begin the group by going around the room and having everyone introduce themselves and tell how they know the PWA. Even if the group is made up of people who already know each other, the introduction process is likely to reveal information that you didn't know and that will be helpful.
Talk about the illness. The PWA should talk about the illness clinically: what is happening right now, how it might be affecting him or her in the near and distant future. Encourage questions from the group, especially 'stupid' ones. Having accurate information or knowing where to get it will be essential. This will also lead into a discussion of specific support needs.
Possible support needs might include:
While it might not be possible to address all of these issues at the first meeting, some of them may need to be addressed quickly. It is important to identify and prioritise the PWA's needs. Be aware that the PWA is not always the best judge of what their needs are. Yet also be aware that disagreement on support needs will, invariably, arise and should be dealt with openly. At this point, the group should have a clear picture of the health issues and a list of support needs. Next, the group will need to define its purpose and limitations. Members should talk about their level of involvement including their time availability. Again, it is important that people be honest about what they are willing and able to do. Consider if the PWA's presence will help facilitate that honesty before beginning this discussion.
A phone tree is a telephone relay system by which someone with information that needs to get to the group quickly calls the first person on the phone list, who in turn calls the next person on the list, and so on until everyone has been contacted. If the group needs to be activated or informed, it will be necessary to contact everyone. We institute the phone tree by calling down the list until we reach someone 'in person.' Depending on the situation, you may or may not want to leave messages on phone machines. In any event, it is advisable to count only on actual person-to-person contact when using the phone tree process.
We have activated the phone tree when Jon wanted everyone to know of a new diagnosis, or when he has been hospitalised.
In determining who will be in the group and the extent to which those people want to be involved, it may be appropriate that some of the people chosen by the PWA not be in the group as regular members, but be on the phone list and become more involved as needed or during a crisis. This has worked quite well in our group. There are several people who live farther away and have chosen to limit their participation. However, when a special need or occasion arises (Jon's birthday party, for instance) we know that these extra people can be counted on to participate fully.
It is helpful to be aware of group dynamics which can emerge in a support group. People may become competitive or resentful about who is the closest to the person with AIDS, who is the formal or informal leader of the group, who does more for the person with AIDS, etc. Many of these problems can be minimised if group members feel able to communicate openly and honestly with each other and if they stay clear about their own feelings, expectations, limitations and needs.
Some groups function better when there is a recognised facilitator. If the informal leaders do not emerge naturally and the group is having difficulty making decisions or moving through agendas, the group should consider selecting someone to facilitate that process. The leader should be a person who thinks clearly about the group, keeping to the agenda with an awareness of the need for flexibility. Because of the emotional charge and because it may not always be desirable to have the PWA at the meeting, the person with AIDS should not serve as the group leader.
Our denial has meant that we sometimes get so caught up in organising and providing practical support to Jon that we forget to notice our feelings and especially our grief. We forget that part of the purpose of the support group is to support each other around the illness of our friend. Ultimately, we must stay aware of the unpredictability of this illness and be flexible with our expectations, changing feelings and support needs, and the role of the group.
Here are some things that have been helpful to us:
It's pretty obvious that a group like this can burn you out very quickly if you are taking on more than you can or want to. If you can become aware of and address these issues early on, you are less likely to burn yourself out and be able to support your friend through the long haul.
Feeling the relationship is one-sided: When the person is ill, he may feel too weak to give emotionally. Group members providing practical and emotional support may feel ripped off. They give and do not get much back in return. Even when the PWA is feeling well, this pattern can continue. Now that PWAs are living longer, it is important that the group allows this issue to be addressed.
Encouraging the PWA to set limits: We have encouraged our friend to set limits regarding social activities. At times, the social demands by well-intentioned friends (both within and outside the support group) have exhausted Jon. Occasionally, when Jon has set limits with some support group members, this has created resentment. We expect to get special treatment.
Letting go of the old relationship: Many of us who had known Jon before his diagnosis have had to adjust to the limitations imposed by his illness. Sometimes he is too sick to go out. A visit scheduled several weeks in advance may be cancelled at the last minute. We can't do the same things (hiking, dancing, day trips) that we used to. It can be hard to adjust and accept the relationship as it changes.
Grieving: Seeing our friend get ill and better, ill and better is hard. How to grieve with the PWA is a constant question. Do we share our feelings with him about his death, when he is very ill? Who do we share our anger or sadness with? It has been scary to talk about many of these feelings, to cry with Jon or express anger that this has happened to him. It is even hard to share these feelings in our support group when Jon is not there.
Spending time together: When Jon was diagnosed, many friends wanted to visit or talk to him often. This wasn't possible. It has been important to evaluate why people want to spend time with him. Is it meeting some need that has nothing to do with Jon?
When a pattern of visiting changes radically there may be some hidden issues. For example, a friend who saw Jon once every other month, now wants to talk on the phone every day.
Support versus nonsupport: Sometimes we have provided support when we shouldn't have. One recent example is that support group members got into a pattern of washing dishes for Jon when he was too tired to do so for himself. But there were times when he was capable of doing his own dishes, but didn't. We would rather spend some time with him than do his dishes. We are still lobbying for paper plates.
State your personal limits clearly. Expect the group to support these limits. If it doesn't feel right to do something, don't do it. If everyone is taking turns cooking dinner for your friend, but you don't want to, for whatever reason, don't.
Allow group members to have different levels of involvement and commitment. Try not to judge another person or yourself when you are not able or willing to help out in some way.
Spend some quality time with your friend. Avoid taking on responsibilities at the expense of fun times together. Coming over to clean the house once a week is fine. If that is the only time you spend together you may feel resentful at some point.
Recognise how you are feeling and be honest about those feelings with yourself, with the group, and, if appropriate, with your friend.
Appreciate yourself and each other for what you do. You don't have to meet your friend's every need. Whatever you do is very special.
Honesty with ourselves and each other about our feelings, needs and hopes. Love especially for Jon and the love that continues to grow for each other in the group.
We hope this outline is helpful in your own struggle.
And others than he, if they had their way
would wrap me up in gray alpaca
or in somber black.
Why only look about
and you'll see
That nature, in her wisdom
otherwise decrees: the trees
bid all their leaves to
flaunt their brightest splendor,
and in this guise,
take one last gay holiday
before they die.
July 19, 1989
David P. Steward, MSW, Ph.D.
Dedicated to Ivan J. Silverberg, M.D., Davies Medical Center, a rare man of compassion, with both intelligence and wisdom.
The e-mail address for Barouk Golden, one of the authors of the above article, is barouk@flash.net
Who:
Doctor (by speciality)
Advice Nurse
Visiting Nurse
Case Manager
Occupational Therapist
Social Worker
Home Health Aide
Infusion Nurse
Medical Supply Company
Psychotherapist
Adult Day Care
Support Group(s)
Church/Synagogue/Temple
Pastor/Priest/Rabbi
Spiritual Director
Ambulance Service
Pharmacist
Acupuncturist
Alternate Therapy Practitioner
Landlord
Building Manager
Best Friends
Family/Relatives
Roommate
Power of Attorney
Lawyer
Funeral Director
Hospice Contact
Housekeeper
Paediatrician
Veterinarian
Neighbours
Dry Cleaner
Health Club/Gym
Van Pool
Broker
Insurance Representative
Real Estate Agent
Property Manager
Important information:
Name
Employer
Telephone Number
Shift/Schedule
Pager Number
Address
Facilitator
Location of important papers:
Birth Certificate
Divorce Decree
Military Papers
Insurance Policies
Will
Baptism Record
Passport
Property Deeds
Financial Records
Taxi Vouchers
Marriage License
Immunisation Records
Mortgage Papers
Powers of Attorney
Disabled Placard
Food Stamps
Common needs of an ill person can include:
A. Hygiene
1. bath or shower
2. brush/floss teeth
3. shampoo hair
4. personal grooming (shaving, cut nails, etc)
B. Prepare food
1. shopping
2. meal planning
3. prepare and cook
4. storage
C. Around-the-clock assistance
1. daytime attendance
2. night-time attendance
3. lifeline services
4. intercoms
D. Transportation
1. appointments
2. shopping
3. laundry
4. banking
E. Care of the house and yard
1. cleaning
2. maintenance/repair
3. watering
F. Child/pet care
1. appointments
2. hygiene
3. baby-sitting
4. feeding
G. Respite
1. for the carepartner
2. for the ill person
3. for visitors, relatives, friends
(2) Enlisting support
A. List all relatives/friends
1. Ask the ill person.
2. Use their address book/rolodex/Xmas card list/etc.
B. Phone and enlist volunteers for different needs
1. The ill person should not do the asking.
2. Let people choose which tasks and at what times.
C. List the persons who volunteer
1. Create a list which shows chore interest and time availability.
2. Copy the list and send it to all volunteers.
3. Include all volunteers' phone numbers.
D. Set up a schedule
1. A calendar with large spaces works well.
2. Don't plan too far in advance - things can change fast!
E. Preplan for breaks
1. All work should be shared including co-ordinating care.
2. Volunteers should have time off.
3. The ill person should have scheduled free time.
F. Last minute changes
1. If a person cannot keep their obligation, they should replace themselves.
2. If the ill person has changes, volunteers affected should be called.
G. Organise a phone tree
(3) Practical ideas for implementation
A. Keys: who gets them?
1. List all persons with a key.
2. Use an estate agent's lock box: eliminates too many keys.
3. Respect the privacy of the person whose key you have. Knock. Call.
4. Kinds of keys: house, car, garage, storeroom, freezer, safe deposit box, boat, RV, motorcycle, mailbox, office, etc.
B. Money: the cash kitty
1. Keep enough cash on hand for cab fare, delivery costs, errands, etc
C. Have a central place for messages
D. Have a central place for medications/supplies
1. Keep medications/supplies in a cool, dark, dry place.
2. Inventory all supplies/meds mid-week; reorder so you never run out of things at the weekends.
3. Do not keep discontinued meds/supplies with those in-use.
1. Support team list
2. Health care resource list
It's easier to have information of this type on one or two pieces of paper which can then be xeroxed and shared. If, for instance, one person who usually does grocery shopping, also needs to pick up medication at the pharmacy they would have the pharmacy address, the doctor's phone number or any other information which might be needed. It is also true that, in an emergency, it will help to have all of this information easily available.
When xeroxing and sharing this information, be aware of and sensitive to the concerns and wishes of the PWA. This can vary a great deal with each individual situation and should be discussed with the PWA whenever possible.
The Forms on the following pages can be used as work sheets to make sure that you've thought of all the important categories. You can use them as a means of gathering all your information in one place and then copy it into another format, if you wish - or use them as is.
Two sets are provided. Use one set right away to organise your resources and keep the other set blank. You may wish to xerox the blank set and keep it for future use - since over the course of time some of this information will undoubtedly change. From time to time, you may wish to update and recopy these lists.
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