Betty lives with dementia and has been supported by Alzheimer's Support for several years. She loves being a member at Mill Street Club in Trowbridge and enjoys outings with her support worker and singing with her daughter Pauline at Movement for the Mind.

But like so many people, lockdown and the pandemic were a difficult time for her and her daughter Pauline.

Pauline said: "Alzheimer’s Support has been an absolute lifeline this year. After Mill Street closed in March I got so many phone calls from Jill the manager there, and they really really helped. I said a huge prayer of thanks when the home support and then the day club reopened and am just so grateful that they are open still now. It was missed so much when it was closed.

"The Home Support workers have been absolutely excellent. I just don’t know what I would have done without you. It was a very difficult time but you did very well to keep visiting. Things had to change but you were still very supportive, it was what I needed. I had so much support from the support workers. They were so good with Mum. 

Living with dementia in lockdown

"My Mum went downhill in lockdown and a lot of people did. She was ticking along quite nicely and suddenly I have got a different Mum on my hands. And with this illness when you lose something you do not get it back.

"Her mood changed. It was difficult for me as her daughter to deal with. Her mood changed and her language changed. It was difficult for us both.  Once you start losing something you do not get it back. She can’t use the telephone now because she can’t put it back in the right place.  And understanding directions. In the past I could explain things and she would get it but in lockdown her language and understanding went downhill.

"I have had feedback at the club that she is not as she was. From being fairly active and happy she is having more moments where her mood dips and she needs more support.  Her memory is much more limited. In the past I could always say ‘it’s the club tomorrow’ or ‘let’s talk about the club’ and she would be much brighter straight away but now even the memory of the club is going. If I plug away and remind her about the dogs, and other things I may get some recall from her but mostly it’s gone. She is still enjoying it when she is there in the moment but she can’t bring it back to mind as she could before lockdown.

A different sort of Christmas

"This year for Christmas I may just do it as a normal day, maybe just put a few decorations up. It will be the first year we don’t do a lot as we usually go over the top with decorations and everything, but the strain of it all will be too much for us both. It will be the first year I don’t send cards from Mum to other people. For my brother’s birthday it took ages to get Mum to sign the card. It is better to do less this year and have a quieter time together.

"She also used to enjoy Music for the Mind but we aren’t going now as the new venue isn’t convenient and I’m not sure how she would cope now. But it was so good before.  She really really enjoyed the singing together.  It was excellent and so lifted her spirits. She could remember all the words of songs and it was lovely to see her singing along.

"We are getting back now and it is wonderful to have the charity there to support us through all the changes. I feel we are in a diifferent phase now but they are still there for us."

 

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