For World Alzheimer’s Day, we went live on Facebook with Cassandra Farren to discuss her lived experience of caring for someone with dementia.

Cassandra is an author who writes about her experiences, one of which was about her caring for her late Mother, who passed away after a 6-year battle with dementia.

“My Mum was a teacher, so had a very switched on mind and was always on the ball. When she retired we noticed she was repeating herself more often, being more forgetful, she couldn’t find the right words and was misplacing things,” Cassandra explained.

She went on to speak about how difficult her Mum found accepting after her career as a teacher, and how easy it was for her to hide it from her loved ones at times. Cassandra spoke of how important the early stages can be for making things easier later on, highlighting these tips in particular:

• Endeavour to get that diagnosis as that allows you to move onto practical steps and treatments.
• Setting up a ‘Power of Attorney’, without this it makes decisions in the later stages a lot more complicated. Alzheimer's UK have a helpful guide to support you in this process.
• Start talking about it from an early stage – If you start earlier, it makes it easier to become a habit later.

A phrase that Cassandra uses a lot in her work is ‘living grief’, which is the process of grieving for someone who is still alive, which can be a common thing felt by carers and loved ones; Which they often don’t have a word for, or a way of expressing it.

Cassandra said: “It might not be the big heartbreaking moments that people associate with dementia. So to give some examples, it was devasting the first time that my Mum asked me what my name was, it was devasting when she forgot she had grandchildren, it was devasting when she forgot she was a teacher.”

“But then there was the little moments of when she forgot to put her shoes on, and this strong, capable woman who never wanted help for anything; Sat there looking at her shoes and looking at me. It was that little moment of grief of watching her slip away in front of my eyes.”

It is those moments that can happen regularly, sometimes daily, for someone caring for a loved one with dementia. Cassandra shared a few things she found helpful to allow for her own self care, while caring for her Mum:

• Be prepared for when you have to make the decision regarding a care home – It is easier to ensure your loved one goes to a good home if you plan in advance, it will put your mind at ease knowing they are somewhere good.
• If you aren’t living with them – Ensure you have time to yourself for self care before, or after a visit, not just in your lowest moments but as part of the routine.
• If you know someone who has a loved one with dementia – Offer to go get lunch with them both, or to invite the person with dementia around for a tea.

• If help is offered to you, take it, allowing yourself help will make sure you are in the best position you can be to care for your loved one.
• Music is one of the things that can unlock memories more than most other stimuli – So a playlist of all your loved ones favourite songs can really help in the tougher times.

Cassandra said: “One of the things that really helped us, and really helped us communicate with my Mum, was the power of music. If there was a challenging situation there would be ‘Dancing Queen’, which was my Mums favourite song, on repeat.

“Whether this would be in my house and my Mum was feeling anxious, Dancing Queen would go on. The day I took her to the care home, which was the hardest day of my life, Dancing Queen was on in the car. When I would visit her and conversations become more challenging, guess what went on? Dancing Queen.”

Cassandra described how much these times helped her Mum, but also herself and the whole family: “My Mum would light up, and at times she didn’t know my name or who I was, but she knew the words to Dancing Queen. Wherever we could, we would be up dancing and keeping that connection going between us.”

To watch the full interview with Cassandra it is available on our Facebook page

If you would like to hear more of Cassandra’s story, you can find her book, ‘I’ve lost my Mum’ online

And finally, you can find out more about the dementia services we have available at Solent Mind on our website