My husband, Tom, was diagnosed with Lewy Body Dementia in October 2020. He had various warning signs for a while before that but resisted being tested. He had retired before he was diagnosed. He was a Transport Manager before he retired. In September 2019 I left work to become his full-time carer, as I realised, he shouldn’t be left alone for long, if at all.
From that time until October 2022 Tom had undergone 6 operations (not related to Dementia). After one of these operations the hospital set up a care package for one week and they decided ADSS was the best company for us.
Thank goodness they did. Tom really connected with Danielle. He was relaxed and chatted to her, opening up about his parents, etc. Enjoying her company, having lots of laughs.
Following that Tom was given a place at The Beacon Day Centre. It really made a difference. I had been unable to take Tom in the shops as he got agitated, but now I could do our shopping, meet friends, or just do things in the house and garden. Even better was the fact that Tom was being stimulated, meeting new people, in a different place and was safe.
Like a lot of people, we had been isolated during the covid lockdowns and rules, very much on our own. The day centre certainly helped make our lives better. Later on, Tom was allocated a second day at the centre, so going twice a week. That was a bonus. There were different people and activities for him too.
We went on a coach trip to Herne Bay, lunch included. I was nervous, I didn’t know anyone and didn’t know how Tom would cope. I needn’t have worried. ADSS were very supportive and helpful, making sure we were alright and enjoying the day. It felt like a holiday for me (first one in 2 years).
There are various groups that we attend:
- A Carers Group once a month, which is an opportunity to meet and talk to other carers. There are always refreshments served.
- Singing groups, which is a chance for both of us to make friends and have a laugh. Tom doesn’t join in singing but likes speaking to people and sometimes plays a musical instrument for a bit. He did once sing a whole song, and everyone was so pleased, it was lovely.
- Tea Dance is also held once a month. Tom knows other men who dance, so he gets up and dances too (even with his bad hip).
- Memory Cafes are usually put on with a speaker attending, who talks about very informative things. We also take part in a quiz and play a game of bingo. There is also a time to chat.
- Activities afternoon – table tennis board games, golf, and many other things we could do together. A fun time.
We have also attended many other activities:
- Indoor bowls, where we were shown what to do. We had never experienced this before.
- Ten pin bowling, that was great and reminded us of the times we went bowling before.
- Cyclopark is another new experience. We went on a double bike, I pedalled for both of us, but when I needed a break, someone from ADSS took over from me.
Other outings we went on:
We have been to Rochester Christmas Market twice and had a carvery and entertainment in a hall. A member of staff stayed with us all day, to help and make sure we were alright. They were always cheerful, making it fun.
A Jubilee Afternoon Tea, with an entertainer too. It was brilliant. Great atmosphere.
Dymchurch, miniature railway fish and chips. Another great day, we were well looked after. It was lots of fun.
Unfortunately, Tom had a couple of falls recently and needed to go into hospital for nearly 2 weeks (Jan 2023). Luckily, ADSS had started working at the hospital and were based there. I was in the hospital with Tom all day every day and the ADSS team would sit with Tom to give me comfort breaks and find out information for us. They also supported us for a while after Tom came home from hospital. That was very invaluable. I was a bit nervous of taking him out at first in case he fell again. I needed to take him to the dentist, so an ADSS team member came with us
Awareness of Dementia
I did notice some signs that something was wrong – like not being able to add 30+70 (he said it has been a long time since he was at school), often read an analogue clock incorrectly, tablets muddled, forgetting how to draw a simple face (he was a good artist) – but I was in denial. I felt I couldn’t say anything to anybody else as that would be embarrassing for him and I would feel disloyal. If other people did notice things, I felt agitated. How silly I was, once I opened up and spoke about it, doors opened, and help was there for us. It wasn’t easy getting my husband tested as he resisted, but now I had support.
When we joined ADSS, I was a bit nervous of Tom going to The Beacon Day Centre, and us going to various groups and outings. I wasn’t sure of where some places were, and I didn’t know anyone. It didn’t take long for me to feel comfortable, and staff felt like friends. We know quite a lot of people now and everyone is so friendly. I feel much more confident. We are with people who understand.
It is scary BUT please reach out and open up as help is there for you.