Another full house and a meeting filled with DEEP discussions at this weeks facilitators Zoom.
Laura Higgins, from Beth Johnson Foundation, is becoming a bit of a commentator on the meetings afterwards – today she said
‘Not to forget our weekly DEEP facilitators meeting with 14 members this week! A safe space to share ideas, experiences and ask the difficult questions. A special guest Bethany McLoughlin, who is researching online support groups for carers of people with dementia from Warwick University’
Bethany joined us to talk to our facilitators group about virtual groups for carers. The facilitators Zoom usually has a mixture of people living with dementia, care givers, partners, professionals taking part. We have often had conversations in the past about the different kinds of groups and unique approaches by all within the network. Some groups are only people living with dementia. Other groups have family members/care givers/ partners there too. Groups also talk about also having time for people to meet separately. It was recognised that everybody needs time to off-load from time to time and it is not always appropriate to do that for example as the wife having a good cry or expressing frustration which she doesn’t want to upset her husband about. Equally the husband in the other room needs to be able to have the same opportunity too.
We talked about how difficult and distressing it can be to be in a forum where people are full of ‘doom and gloom’. Steve said if he has a good moan he always makes sure he balances it with a positive. People with dementia on the call said they think they are aware of some of the very distressing situation people may face as a carer, but that it is very hard to hear when you are living with dementia. Pete, Steve, Chris and Dory all said that they know what might be ahead, but that it is important that they don’t dwell on what their future might be. Dory said she lives for each day.
Everybody recognised how hard it is to find a balance, but felt that it is important that everybody is given the right space and the right opportunities to feel able to be honest and get support.
If you are interested in contributing to Bethany’s research about online support groups for carers for her PhD this is the link to her study
Rachel mentioned the Getting Along Programme GA SUCCINCT UPDATE and that Damian has spaces to work with 8 couple over 4 sessions each. Damian also offers training for people to learn about the Getting Along Approach. http://www.innovationsindementia.org.uk/what-we-do/belonging/
We also had a bit of a chat about people living with dementia being on interview panels. We wondered if it would be a good exercise to ask people living with dementia to write a job description for a Dementia Support Worker and also ask a professional to write one. This was based on Pete being involved in some upcoming interviews.
There were a few lovely comments about people valuing the opportunity to come together each week. The aim is to come together to share, learn and support . Paul added he is always first in the queue to get a place on the weekly Zoom and it feels like family.
We also talked about what happens when we can come together again. A really important issue but it was felt that there is a bit of a way to go yet before this will happen. We could spend alot of time on this but then things will change in terms of what is required again. We promised to keep checking in with each other about what we can do when.
Other things we talked about include good news about Wendy’s husband getting his vaccine. Lots of confusion and no clarity about a sensible approach to people receiving the vaccine in community settings or even with people living together in the same house.
Additional note from Laura: “Just reflection on our meeting yesterday and someone mentioned about the struggles of getting online, We have our Healthy Generations Group at BJF which help people with new technology and getting confident online. If you feel anyone would benefit from getting in touch let me know and I can make the connection o
r I’ve attached the poster here
The next meeting will be on Wednesday 20th January between 12.30 and 1.30 and will also include the draw for the six winners of the DEEP Hug Bears.
If you would like to join us please email Anna@myid.org.uk
