Wednesday, 11 May 2016

Linda's experience since being diagnosed with dementia

There is a bit of a dementia theme on the blog at the moment which works well as Dementia Awareness Week starts in just a few days.

Last week I wrote about the Dementia Supportive Communities Event in the North, and this week we focus on young-onset dementia with a look at the South of the county.  

Bethan Morris, who is a Dementia Support Worker with Alzheimer's Society for Gwent and South Powys, recently contacted our Information Service to find out more about activities in the county. 

As a result she was able to put me in touch with Linda, who was diagnosed with young-onset dementia, dementia which affects people under the age of 65. Linda kindly agreed to tell us about her diagnosis, and what has happened since.

I knew I had problems with my memory whilst I was at work and didn’t think much about it and used to say I am having a "dementia day" and could someone help me? Little did I know that I was suffering from dementia. I did ask my doctor on several occasions about my memory loss and was told it was my age - it's normal as people get older, or I was depressed and given anti-depression tablets. 

It wasn’t until I saw a different doctor after I had retired from work at the age of 60 that they thought there was a problem with my speech and memory and I was given a memory test. From there I was referred to a memory clinic at the hospital. I was given a memory test at the hospital and then saw the consultant and was told I had a form of Alzheimer’s but he would like a second opinion. I went home and looked at the diagnosis on the internet and felt the diagnosis wasn’t me as I did not fit the criteria. After a MRI scan I was given the second diagnosis of vascular dementia.

At the first visit the consultant asked me if he could inform the Alzheimer’s Society to come and visit me and to give me advice and information and describe the way they could help me. 
I was visited by Anne from the Society who talked about what the Alzheimer’s Society could offer me and the help that was on offer, she also told me about all the activities the Society provided like a singing group, art group and a monthly memory cafe. At that time I did not want to speak to anybody about my illness as I couldn’t think quick enough to answer questions and I didn’t want to feel silly or be judged, and anyway I couldn’t sing or draw. But after time I felt like I would like to go along to a memory cafe to see what it was like. The first time I was extremely nervous and frightened but I was made to feel very welcomed and from here the Society has changed my life for the better.

From the memory cafe I made friends and was asked to join the singing group. I said no I couldn’t sing but was told that didn’t matter as it was fun and I would enjoy it so I said I will give it one go and if I didn’t like it I wouldn’t go again. After going for the first time I am still going and we have just had our fifth anniversary. I love it. Our choir mistress is extremely funny and we have a marvellous time and come away feeling uplifted. We now have gigs all over Wales and have even sung at the Millennium Centre. I was also asked to join the art group, my art has really improved, I am unable to copy other work as I have a very shaky hand but I do my own thing and love it. Mine is more modern art but it doesn’t matter if you cannot draw as there are always ways around it.

I now sit on a Service User Review Panel, we either overview a new/old document or have a live speaker who would like our opinion on new projects etc. Age Cymru has been commissioned to ask people across Wales about their experience of living with dementia and wanted our views. We have been asked how they could improve the Memory Walk etc.

About five years ago there was a forum for Younger People Living with Dementia and we were asked what we wanted from the community. The joint opinion was that we wanted our own permanent unit for people living with dementia. Somebody on the panel asked ‘Was this just a paper exercise’.

About two years later, however, this idea became reality because the Seren group took on the project in Blackwood and they asked the SURP if we wanted to be involved once the plans had been drawn up. We sat every month to discuss how the project was coming on, we chose all the interior, even the name of the unit. There is an outbuilding we called the ‘CWTCH’ where meetings could be held, we could have parties, our own kitchen to make drinks and even a hairdressers and a chiropodist room. We named the building ‘Cwmgelli Lodge’, this is now opened and we have our SURP meeting there and there are now permanent residents living there.

Having dementia changes your life and sometimes it is difficult but the Alzheimer’s Society helped me to change it for the better. I have become more confident, have a feeling of self worth being able to change people’s perception of dementia, I can emphathise with others, listen to others and offer my support and encouragement.

I attend the monthly memory cafe, singing group, art groups, SURPS' meeting, attend interviews, talk at workshops and conferences, and became an Ambassador for the Alzheimer’s Society. My husband attends a carers' meeting group to discuss any issues and sometimes there are speakers - at least he has a point of contact should it be required.

I now have a befriender Chris and she takes me out every week for two hours. I am always asked where I would like to go, sometimes we go on girlie shopping trips, or go for walks to the wetlands, parks or reservoir, to museums or just go to places of interest but we always end up for a coffee and a chat and this gives my husband time for himself.

I have learned to change small things for the better to improve my life. I make lots of sticky notes and place them around the home to remind me of things I might have forgotten like my purse, my phone, my keys etc. I make lists for when I go shopping and I have a note to remind me ‘have I got my list’. We have changed the cooker to an induction cooker so that it will switch itself off if something is burning, my iron turns itself off if not being used, my shower is set at a certain temperature so I only have to turn one handle, my calendar has become like a bible to me as I write everything on it so I know what it going on every day, and I keep a notepad and pen in my bag so that I can write information down as I normally forget dates.

I am an Ambassador for the Society because I like to help others and I like to give back to the Society as they have given me a quality of life that I thought I would never have.

I look forward and not back, concentrate on the things I can do and forget about the things I cannot do, try new things and if I don’t enjoy it I don’t do it again and can say I have given it a go but it isn’t for me.

You can live well with dementia.

Many thanks to Linda for telling us her story.

The Alzheimer's Society office for Young People with Dementia where Bethan Morris is based is in Pontypool. Staff provide information on all aspects of dementia, including support on caring for a person with dementia and providing emotional support to Younger People with Dementia (YPwD) and their family members. A Younger Person with Dementia is someone diagnosed at the age of 65 and under. This service is available across Gwent and South Powys. Also available: one to one support service for younger people with dementia, offering social support within the community. Home visits can be arranged, please contact Bethan Morris by ringing 01495 768744 or email:

Dementia Awareness Week is from 15 - 21 May 2016. Brecon Dementia Friendly Community has organised a number of additional events to coincide with the week, you can find out more here. If you know of any other events or activities then do let us know in the comments section below.

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