My husband Terry was officially diagnosed with Alzheimer’s at the end of 2021.
Ten years earlier he had been told he had mild cognitive impairment, however things got worse over time and particularly bad during the pandemic when we weren’t going out and doing things.
It had actually been written on his notes in 2017 that he had dementia and he was given Donepezil, but it wasn’t communicated to us that it was dementia, just that he should take the drug to help keep the memory loss at bay.
In hindsight it may not have made a difference if we had been told then. Terry’s decline has been very gradual, and he has been able to slowly accept things.
What did help hugely once we had the diagnosis was the nurse at the Memory Clinic we were put in contact with suggested we contact Alzheimer’s Support. One of their dementia advisors came to see us very quickly and advised us about local groups.
Terry needed convincing but he agreed to give them a go and we started with a singing group, because he does love to sing. I found that starting with something he used to enjoy doing really helped and there are lots of different activities on offer.
Now he attends an art group and a movement group once a fortnight. He is very happy at those groups. He doesn’t necessarily go for the activity but enjoys the banter, coffee and cake afterwards.
The groups have helped him to regain his confidence and he is much happier now. He was reluctant to attend a day centre too but has been going to one for a year now and is absolutely fine. I get to have a break too.
Terry’s walking has been affected and he didn’t want to use a stick, but his daughter got him one, he started using it and it really helped.
He had an annual review recently and it was suggested he try a rollator mobility aid and that really helps. On a National Trust visit recently he used a wheelchair and it meant we could cover more ground together.
I’m lucky that Terry was fine with giving up driving and now I do the driving. He’s fairly easy to reassure if he gets confused.
Things I wish I’d known earlier – I probably would have applied for attendance allowance earlier.
Once I had to take Terry to A&E and I initially wasn’t allowed to go in with him because I didn’t have a form that shows I’m his carer. I was eventually allowed in, but it would have been easier if I had had proof that I was a carer. Carer Support Wiltshire have provided a letter since, that says I am his carer. But attendance allowance – even if you don’t feel you need it – can pay for the day centre and other things.
I probably wouldn’t have looked online for advice as there is so much scary stuff there. I read Contented Dementia by Oliver James, which is excellent and recommended by the Memory Clinic.
Also two of Wendy Mitchell’s books – Somebody I Used to Know and What I Wish People Knew About Dementia. They helped me to know what to do and what to say and both contain the positive message that you can live well with these conditions.
It’s one of my biggest bugbears that dementia can be portrayed so negatively on TV etc. I feel lucky to have the support we do in Wiltshire from Alzheimer’s Support and other organisations.
