Some of us are afraid of support groups. I think we have the idea that we will be required to stand up and make a confession about weakness, when quite the opposite is true. We are afraid to share what we may perceive as embarrassing or shameful. The idea that we aren’t coping is exactly why we should go, but many of us wait until we are almost broken apart before we allow ourselves to go. These are just some of the reasons why not to go. But these are also all the reasons to go.
There is nothing as encouraging and strengthening as spending time with people who really truly understand what you are going through. Dementia strips away a lot of the pettiness in life. It’s a sort of humbling humanising experience that well managed can strengthen us.
In the right group you will meet people just like you who are at the start of this journey and people who are a long way along the road and who are still making it. That’s encouraging in itself.
Here are some of the reasons to join a group:-
THE PROBLEM IS NOT THE ANSWER.
Find a group that is focused on solutions. One that acknowledges the problem but then moves to seek a way forward. A strong well informed group will be able to share solutions and not spend time echoing the problems.
MISERY SEEKS COMPANY
You don’t want to spend time with negative people so find a group with the ability to be positive and encouraging about finding solutions. Find people who understand the grief and the heartache but also know about strength and resilience.
WE BECOME THE COMPANY WE KEEP
A support group should help you to keep hope alive. What you hope for will change, but as long as you have some hope about something you’ll feel a lot more confident.
SHARING IS CARING.
We talk to hear what we are thinking.
If you are caring for someone with dementia I know for sure that you have something to say that could change someone’s life forever – including your own. Nobody cares for a person with dementia without gaining a lot of new insights and knowledge. Sharing this can be the way to build the muscle you need to get you through this time.
WE EXPECT TOO MUCH FROM DOCTORS.
Doctors play a vital role, but your doctor doesn’t know everything about the lived experience, especially if they haven’t been through dementia in their personal lives. They need to stay objective. Their primary role is diagnosis and medicine and that’s a good thing. It’s a frightening experience to find out that your doctor doesn’t know all the answers and find yourself wondering aimlessly around not knowing where to go for help. A good support group is your soft place to fall.
THE QUALITY OF THE ANSWER IS IN THE QUALITY OF THE QUESTION
Simply put – you will often find that someone else asks the question you were too afraid to ask – or better still – they ask the question you didn’t know you needed to ask! You knew the problem but you didn’t know what to ask to solve it.
A GOOD GROUP WILL BE OPEN TO DISCUSS THINGS THAT OTHERS WON’T OR CAN’T.
In my experience there are groups where it’s clear that the facilitator doesn’t have the capacity to deal with certain issues. Facilitators who are too afraid to take the lead. A good facilitator knows where the boundaries are and is aware at all times of the emotions in the group. You should be able to rely on your facilitator for that.
A GOOD GROUP WILL HELP YOU MAKE BETTER CHOICES.
Anyone in the world of dementia care knows that the issues are so vast and varied and that everyone seems to have an opinion or an idea which means you can end up very confused and frustrated. When you find the right group you should be able to come away from a meeting having gained some clarity about an issue.
You will always meet people who are way worse off than you which will leave you feeling grateful and encouraged to go on. You could even find yourself able to share something that could help another person in more ways than you can imagine. Maybe you’ve been where they are once before and you can tell them what you did that helped you through it. I have received some of the most profound ideas from the most unexpected sources.
FIND A GOOD MATCH
The most important thing is to make sure to pick a group that resembles your contempories. Don’t join a group that is made up of people you would never have chosen to spend time with. If you didn’t relate to them then you won’t relate to them now.
ONCE YOU ARE IN THE RIGHT GROUP THE BENEFITS ARE ONGOING.
I have a friend for life – at least one – from a support group. We go out together, and, yes we do talk about our loved ones a lot - because we can, but we also talk about the future and in that way we make each other braver imagining together that despite everything, we can survive this and could even have a bright new future – changed as we are forever by this experience. Actually, we even laugh a lot – at ourselves.
In my view the very best group is the one run by Livewell Suites who have a meeting once a week somewhere in the Cape Peninsula. I have spoken at the Kelvin Grove group in Claremont and will do so again in August at the Somerset West venue. Besides the good coffee and the freshly baked cream scones – the groups are friendly and always helpful. Terry and Nicolette who organise and run these groups are some of the kindest people I know.
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