Hello again.
First of all, a great big THANK YOU! to all of you who have sent in suggestions or advice. We've had quite a wide range of views and ideas... and I guess the letters/ emails reflect the diversity of carers. While some of your suggestions were quite practical and specific things we could provide to individual carers:
Others advised on strategies that individuals could undertake themselves, such as:
Some suggestions focussed on the sharing between carers who understood the situation:
Others looked forward to time out with a group of others, not to discuss caring but to have a breakaway from it all:
So lots of different ideas for us to work with.
There were also some common insights about caring that came through many of the messages. One insight was the awareness by carers that the demands were emotionally hard as well as physically hard. Three issues seemed to stand out very clearly. One was the need to "keep going", or "cope" or "get through it". There wasn't any sense of giving up, but there was a sense of wanting ways to cope with the load.
Another issue identified was the sense of isolation or loss that carers felt when Huntington's progressed in a partner, changing the balance in a relationship. While not "alone", they still felt lonely. And a third issue revolved around the sense of guilt/relief at having some time out from caring! While the idea of time out was welcomed, for many there is a sense of guilt about the time away from caring and a reluctance to use services available to them.
For our first information exchange we plan to look at the physical, mental and emotional health aspects of caring. The theme will be "Growing stronger....caring longer". Topics will include looking after your emotional well being, how to cope with the many demands of being a carer, tips for physical health, maintaining a sense of self, and, keeping balance in our relationships. The sessions will emphasise positive ways to care about ourselves, while we care about others, and how to grow stronger in the role of carer. We hope to have some experienced carers share their insights and to include some guest speakers on around the issues of "growing stronger.... caring longer". We are planning a couple of different options - possibly a metropolitan session in October and a rural session in November. More details soon.
'Til next time,
Maria