And here are some more blogs from people talking about dementia and the impact on families
An article by Jude (@dragonbirdy)
Tea, cake and music at the Feel Good Cafe
I was chatting with Lee a couple of weeks back about how much my dad enjoys going to the Feel Good Cafes run by the Alzheimer's Society in Swansea, when she asked me to write a review. I am very happy to share our experience, hopefully others will find it useful! (By the way, apologies in advance for over use of exclamation marks)
My dad is 89 years old and has vascular dementia with Alzheimer's mix. I asked him if it would be ok to write about our trips to the cafe, he said fine as long as his nom de plum could be Al Zimer! He may not be able to speak so well anymore but he can still crack terrible jokes!
Dad loves listening to music and we found it lifts his mood when he's feeling down. So when Julia from the Alzheimer's Society in Garngoch, Swansea mentioned they run an afternoon cafe for people with dementia and their carers with music and cake, we thought we'd give it a try! Music and eating, two of dad's favourite things. We have been going since September and dad really enjoys it. We didn't go with high hopes, with him not being the most sociable person in the world, but he really surprised mum and me and looks forward to his singing trips!
The Feel Good Cafe runs twice a month, the first being in St Johns Church Hall in Gowerton and the other in Bishopston Community Centre. The cafe is between 2 and 4pm and when we arrive, Julia and the volunteers always have a lovely warm welcome for us. The tables are all set with proper linen tablecloths and napkins and little vases of flowers.
The organisers arrange for great singers/ musicians to come along and entertain us. This week, a folk duo Huw and Bob played in Bishopston, singing some of the old favourites like You are My Sunshine and Delilah along with a few of their own songs about the local area. There is a half time break for cake, a cup of tea and a chat!
At time of writing, the cafe is £2.50 per person and runs from 2-4pm at St Johns Church Hall in Gowerton on the 1st Tuesday of each month and then on the 3rd Tuesday in Bishopston Community Hall from 2-4pm. If you are in Swansea and look after someone with dementia, it's well worth a visit, I will hopefully see you there! Everyone is so friendly and it's also good for carers to get out in a friendly social setting where they can sit, have a chat and have someone bring them a cuppa and a slice of cake. If you want more information, contact Julia Hackett by phone on 01792 or by email firstname.lastname@example.org If you are in another area of the country, contact your local Alzheimers Society for details of your local events.
Stuart lives with, and cares for his dad (Peter) who has dementia. This is their story, written by the two of them.
Mum and dad divorced when I was in my teens and I moved away from the area but came back when my own marriage ended, five years ago. I moved in with dad as a temporary measure when I was house hunting but realised fairly quickly that dad needed my support as he was displaying unusual behaviour, had become forgetful and was finding it difficult to carry out some activities due to a lack of confidence and some confusion.
"I was pleased when Stuart moved in, but also worried that it would be difficult to hide my problems from him if he was living here, full time. I'd been having problems for a while but was coping reasonably well by keeping notes of things and slowing down the pace of life to a speed I could cope with. I knew I ought to see my doctor but was also worried about what she'd say - I knew I'd got some form of dementia".
After a few months and an episode when dad went missing (he'd been out, doing the shopping and didn't return and I found him after a neighbour's daughter saw him walking along the dual carriageway five miles from home), persuaded him to go to the doctor an after a series of tests and two hospital appointments, it was confirmed that dad has vascular dementia.
We quickly realised we needed some support. Although I work from home, my office is at the top of the house and the work I do means I need to be able to concentrate without interruptions, particularly when involved in something particularly technical. This meant I wasn't able to keep an eye on dad all of the time. We recruited a Personal Assistant who comes in for 3 hours a day. Henry (the PA) is great! He works for several people and is wonderful with dad. His duties include taking dad shopping, encouraging dad to do some light work in the garden, promting dad with his medication and also assisting him with bathing and personal care. Although dad can still carry out many regular daily activities, he needs prompts and encouragement at times.
We purchased a GPS device which dad wears whenever he is out of the house. This piece of kit gives me piece of mind. It means I can easily find dad when he's out and about by logging onto the site and looking at the map. "I didn't want to wear the bloody thing - it's too much like Big Brother, but as Stuart said - people can be tracked by their mobile phones and almost everyone has a phone, and this is just a different way of keeping me safe. Stuart doesn't have the time to spy on me, and why would he? I've been reassured that the device is just a reliable way of keeping me safe and it means I can still go for walks".
I also bought some other aids for dad which include pressure mats which triggers a buzzer under my pillow, so if he gets up in the night I can go into him if needed. We also use a monitor which means I can talk to him when he's in his room or he can call out for me if he needs me. We've also bought several lights which are triggered by motion so they turn themselves on if dad gets out of bed. This has cut down his risk of tripping in the dark (he has a habit of leaving his slippers and dressing gown on the floor) and has often fallen over them in the night.
"It's turned out pretty well having Stuart live with me. It's taken away the pressure and stress and we can go out for a beer or to watch football, just like regular dads and sons do. My grandchildren live with their mother but come to visit us very often and they have taught me to use a computer so I can send them funny photos or talk to them using a camera attached to the machine. I know things will get more difficult and I've talked to Stuart about that. I don't want him to worry about me and know there will come a time when I need more help. We've put my affairs in order too and actually had quite a laugh in planning my funeral, which sounds a bit strange but it means it's done and dusted and I can concentrate on living well for as long as possible. Dementia is a terrible thing but with Stuart's support and the pieces of kit, and my lovely carer, I can honestly say I enjoy my life. It's brought us closer too - we never were that close before, but Stuart is a wonderful son and father and I'm very lucky".
Dad and I muddle along together pretty well. Of course it can be difficult (not good for a single man's social life!) but I enjoy spending time with him. Through this website I've found lots of useful information and the experiences shared by others in the same boat have been invaluable. I've met some great carers locally too and we support each other. Best of all, dad and I can enjoy a good laugh, a walk together, a beer or a football match. It's always good to see him smile.