Mandy’s story

Mum was diagnosed with Alzheimer’s disease in 2010. We were first told that it was short-term memory loss. We didn’t actually know anything about Alzheimer’s, so it was quite a shock a couple of years later when she went back to the mental health unit to be reassessed. We were then told after a brain scan that Mum actually did have Alzheimer’s. As a family we were quite shocked.

I looked into the illness. I researched it, did lots of work and managed to find a couple of day clubs. I contacted the local authority and they came around and did an assessment of Mum’s needs. That was when we were able to get some help with funding through the local council. They support Mum’s day club visits.

We found that we didn’t really have help anywhere else. Once you’re diagnosed you’re kind of left on your own, and it’s quite scary for a family. Especially as Mum has always been very independent. Her whole life literally had to change.

Getting assessed and adapting the home

I contacted social services and they came round and assessed Mum, and at the time Dad as well. So then we had lots of things put in place. We had some rails put in for the stairs. We also had some rails put in outside and we had a bath lift installed, which has been a life-saver. 

I also found a very good carer when my father passed away. When you have two people at home, it’s nice to know that you’ve left that person with somebody. But when the other person sadly passes away, everything has to change. Because when you’re leaving somebody who is vulnerable alone, you have to make sure they’re safe.

Finding support

It is really difficult to get Mum into the GP. We just found that there was no support. If you ask for information from the local council, the pack that they send you, it’s about 55 pages long! To try and  go through all of that, it’s quite daunting really.  

Although there is the Alzheimer’s Society, unfortunately our local branch closed down. It was just literally through word of mouth and through friends who I’d met at the dementia club that we found out about more support. Otherwise I wouldn’t have known that Mum didn’t have to pay any rates [Council tax reduction]. I wouldn’t have known about some of the clubs that Mum goes to and some of the support that she now gets.

I sometimes think that  Mum is lucky that she’s got me. Because I’m quite productive, I’ll look into things and I’ll Google them and try to find out as much as I possibly can, to help get some support. But if it was just down to someone like my  Mum or my Dad, maybe they would just be left on their own.  

The family play a major role. I’m lucky that I’ve got the support of my brother and nephews, and my husband and my sister-in-law, and also friends and relatives. 

Normally one of the family members picks Mum up in the morning, helps her get dressed and washed, takes her to her day club, and she stays at her day club. I then go to work and arrange my hours around Mum.   

Now, I think Mum’s quality of life is fantastic.

Practical steps to take following a dementia diagnosis