The Collected Wisdom Of Carers

Anecdotal evidence says that carers are more inclined to take advice from other carers or to use a service, or seek help or support on issues if they know of another carer or carers who have used the service etc. They are more likely to judge a service as appropriate if they know of other carers using that service, or support. For many, there may not be the opportunity to know other carers, to discuss experiences or issues with other carers due to the numbers and spread of carers of people with Huntington's Disease.

We know that experienced carers of people with Huntington's Disease have a wealth of experience, that is often not matched by the medical or allied health professions...

Telling a story, or sharing a point of view through writing, allows experiences to be shared and discussed by a group that can be quite diverse. As an exercise, writing helps to clarify our thoughts, and we can sometimes find our feelings on an issue "surface" through this process.

We wanted to collect the wisdom of our carers through their stories and share it with others.

The aims of the project were

  • to encourage a small group of carers who did not necessarily know each other, to share feelings or ideas or thoughts from their experience of caring, and,
  • to discuss issues of concern, in a non-threatening, friendly environment, and
  • in recognising this wonderful resource, share it with other carers.

Why do it this way?

Mini-storytelling was chosen because it is a way of involving a small group, generating ideas quickly and allowing discussion, in a friendly, fun manner...after all, it was a Holiday Camp!

Sharing personal experiences...

Carers were asked at the outset if they were happy to share personal experiences with each other, and with other carers. They agreed readily that each other's experience may be quite different, but useful to someone else perhaps.

We decided we would hold several short sessions over the course of the week, with a day between steps, to allow reflection and thought. Each session was about 1 - 1½ hours, and fitted into the general program, ie between scrumptious meals! One of these sessions was held away from the Camp, at a coffee shop, for a chat in a different environment. This proved to be quite a productive session. Actually, we seemed to discuss everything from shopping, to food, fashion, world politics and even a bit of caring.

Confidentiality issues:

Each carer agreed that there was to be absolute confidentiality around the material discussed by the group. Names and identifying information would not be used in the stories. If carers did name a person or themselves, these names would be removed to protect the identity of those in the story or example.

".........in the beginning there was the word"

As we did not have a lot of time, and because we were a fairly diverse group, a set of cards were used to get the session started. The Cards were a pack called "Views from the Verandah" - produced by Innovative Resources (St Lukes, Bendigo, Victoria). This is an educational resource used for group-work, to encourage discussion, present points of view, and develop a tool for reflection etc. We used the cards as a catalyst for the conversations or mini-stories that resulted.

The steps

Because we only had 4 days, the 6 steps were spread over four sessions. They included a) Acknowledging, b) Writing, c) Discussing, d) Naming, e) Reviewing, f) Sharing. The first session covered a) and b), the next session was c), the third session covered d), and the final session covered e) and f).

The sessions had to almost "stand alone", as there was no compulsion for carers to return for sessions, 2, 3, and 4. However, carers did turn up for all sessions and each of the 6 carers contributed 3 short pieces which were discussed at subsequent sessions. (Note: The steps are detailed in a separate document if anyone wants more specific information.)

Some Outcomes of the project:

1. Sharing thoughts

A key outcome was the sharing of ideas and thoughts among a diverse group of carers. This in itself was described as being very valuable, despite the differences in background, situation of each carer.

2. Finding common needs from different experiences

One "new" carer described her initial reluctance to participate in the sessions because "everyone's situation is different". At the end of the week, however, her thoughts were very similar to another "experienced" carer. This showed how different situations could still be supported by a process (driven by the experience of other carers) such as this.

A key message was the acknowledgement of other carers as a resource that supported carers e.g.: "we propped each other up.... and got through the difficult times". The number of times the comment was made that "we need to talk to others", suggested that this is a major source of support for carers that we should foster.

3. A simple process to use

Another outcome of this exercise was the establishment of a simple process that we can use to support other carers, especially given the far-flung distribution of people around the State.

4. A form of support

Story-telling or sharing stories in this way , does not replace the "on-going support" of another carer who understands your situation, but it can be reassuring for carers to know that others have had similar thoughts, and may have had similar or different solutions to challenges.

5. Changes in perception

There were also important breakthroughs in how carers perceived their own strengths etc, and these were acknowledged as such by the carers.

The spread of the exercise over the week, showed that an idea or issue could be"reframed" over time and by sharing in the perception of others.

In discussing the different "names" that carers gave to an idea or thought, it became clear that other factors played a big part in how a carer perceived an issue. These were the concept of time- how long had they been the main care-giver? For example, one carer may see an issue as a threat, but another carer described it as a strength, because she had risen above it, and moved on.

6. Topics for further discussion

Although not specifically targeted by this exercise, the issue of resources and finances for carers was raised in a number of ways, by the carers. It was acknowledged that the resources available greatly influenced a carer's ability to get through the challenges facing them. One bit of advice, for example, was the need for careful management of finances, i.e. "clear your debts if possible as early as possible in the care-giving journey". Another was the constant drain on finances due to the increasing costs of care, including food etc. (These comments generated sufficient discussion that a possible future session might focus just on finances, planning ahead etc)

7. Unexpected benefits of caring

One of the strongest issues that stood out for me as an observer was the process of change in themselves , that carers had noticed.. It was nearly always very positive. The carers spoke of "learning to speaking up", "becoming brave enough to speak publicly", and of "taking on leadership role". What does this suggest about the role of carers? Perhaps sometimes, it is a role thrust upon us, and yet there are unexpected benefits. Experienced carers seemed to be saying to new carers...."it can be very hard, and sometimes very isolating or bewildering...but, you will get through, and it can be positive" So it seems that "caring", with all its challenges, also offers the possibility of a time of strong personal growth.

A simple tally of the names (strengths, weakness, opportunity, threat, etc) that were listed in the exercise, reinforced this message. Of the thoughts or mini stories (18) made by the group, the 108 comments or namings (strength, weakness, opportunity, or threat, plus ... quality, future, miscellaneous) the results were very positive. The totals were 32 strengths, 26 opportunities, 18 qualities, 11 weaknesses, 9 threats, 6 future, and 8 miscellaneous ( indulgence, overcoming fear etc)

And after the Camp....

Like the other activities at the Camp, we hoped this activity was something that could be continued beyond the Camp. We wanted the enjoyment or benefits to be sustainable. So the "process" needed to be a fairly simple one that could be carried out by the carer on their own, if they found it to be a helpful process. To this end, we have modified the activity a bit, so that carers can share their thoughts by writing to other carers, or sending ideas to me and I send them on for discussion. Eventually we may be able to have a tele-link or a chat-line for this sought of thing. In the meantime we have our thoughts, and pen and paper....Please contact me if you wish to have a go at this activity, either as part of a group, or on your own.

While no one is claiming that this was a scientific study...it was a simple exercise, part fun, part serious, with a group of carers, away on a holiday camp. But it does tell us something special and that is:

We must acknowledge, collect and share the wisdom of our carers.

And that is what we hope to do in our Carer Support Program. If you'd like to share an experience or a story with others through the newsletter, or on our web page, drop us a line.

Maria Mackell
Co-ordinator, Carer Support

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