My mum, dementia and me!

“The best medicine is that we have our relationship back thanks to good communication techniques”

When Gail felt she had no one to turn to for help when her mum Joan was displaying signs of dementia – despite going down many avenues looking for support – one call to Empowered Conversations changed everything and enabled her and her mum to reconnect and rekindle their close relationship.

Here Gail, who works for NHS in Salford tells us how the communication techniques she learned with her brother on the Empowered Conversations course have been invaluable.

“Growing up, me and my brother had a great relationship with my mum. We sadly lost my dad in the early 90’s when I was young and still living at home.  My older brother had his own family by then so our relationship with mum became even more important from that point.  She has always been a strong, independent and hardworking Salfordian – a very positive role model to us both – often working three jobs so we didn’t do without.  And we have both gone on to have great careers and this is something she has always been proud of.”

“Now in her 80s, mum has continued to live a full and varied life, with lots of friends and a close family. She was very active; a key member of two crown green bowling teams, she ran her own clothes party business and took cookery classes at night school and continues to drive.  She enjoyed travelling as well, taking holidays abroad with her friends and even having four month stays in India in the winter months.”

Sadly, Joan was diagnosed with breast cancer in 2016 and required a mastectomy followed by chemotherapy, but the family pulled together to support her, and she eventually got the all clear.

“Mum started to forget and appeared muddled and confused after the cancer treatments and so it was easy then to blame it on the ‘post chemo brain’ but her family and friends became concerned.

“She started muddling days up and sending random texts to me – texts that made no sense, and when I asked about them, she denied ever having sent them. She did other things too that were totally out of character, like turning up at my house at odd hours of the day with no prior warning. Her hearing was going so we didn’t know if she was mishearing and after being diagnosed with hearing loss in both ears, she refused to wear her hearing aids often responding in a childlike manner and becoming short tempered with us.  This wasn’t the only personality change we experienced – apathy about everything including serious matters, when mum’s response would always be ‘oh well’ and then she’d change the subject.

“I was particularly worried for mum’s health and safety during lockdown as she would not stay at home and would spend hours queuing outside different supermarkets to do her shopping, even though this had been sorted for her so she didn’t need to go out at all.”

By the summer of 2020 Gail made the decision to ring her mum’s GP to ask them to do a health-check intervention. This needed the co-operation of Joan, who was in denial, and so this caused issues in Gail and Joan’s relationship. The GP did eventually agree to do a memory test with Joan over the telephone and her mum admitted that she had written down the information so she didn’t have to memorise it, coming out with excellent results!

After being referred to Little Hulton Mental Health Team Joan was then sent for an MRI and was eventually diagnosed with a mild cognitive impairment.

“I felt this diagnosis was wrong and could see the changes increasing in mum’s personality and actions.  I felt very alone and unsupported, with no one to talk to about it. Arguments between me and mum also escalated, and our relationship was being tested to its limits and it was making me feel very sad and I no longer looked forward to seeing mum which in turn made me feel really guilty.

“It was only when I made contact with Age UK through Christies that things started to turn around, as they introduced me to Empowered Conversations.”

Gail and her brother Keith, started on the Empowered Conversations communications course (online due to lockdown) which helped them both see life through a different lens – that of someone living with dementia.

“The course taught us how to use different strategies to manage situations which could previously have resulted in distress for us or mum, or all of us. It helped us to work on ways of improving communication, often using techniques I would never have thought of before going on the course but now that make complete sense.

“Being able to share similar experiences with other people on the course was great; it was a comfort realising there were others out there who were going through a similar situation and that some of mums behaviours weren’t out of choice.

“The relationship now between me and mum has improved immeasurably. I have changed my strategies and I am now calmer and more patient with mum. Before I went on the course there had been barely any trips out together as it was too difficult and too stressful to manage. Now we have been out together, and both enjoyed it. We went to Bents Garden Centre and I got a small trolley, saying it was for me, but thinking that mum could take it at some point to lean on. If I’d have asked her if she needed one – which I normally would have – she would have responded abruptly with ‘No!’ I took a calmer approach when she repeated the same thing in conversations, remembering that in her head it was the first time she was saying it. And each time I said ‘wait here a minute’ and I would turn around to see she was stuck to me like glue, thanks to the course, I assessed the situation through a dementia lens and realised she might be worried about creating distance between us if she couldn’t find her bearings. When we returned to the car she insisted on taking every item from me to put in the boot which in my head was inefficient but thanks to Empowered Conversation I realised she was still my mum and just wanted to feel like she was helping so I continued to hand the items to her.  When we had finished she said ‘we make a great team’ with a big smile on her face.  She just needed to feel needed and Empowered Conversations made me realise that and the reward at that moment was priceless.  Very simple to do once you know, but a real breakthrough which the course has taught me.

Empowered Conversations reassured Gail that her pursuit of a 2^nd opinion on the diagnosis for her mum seemed the right thing to do after discussing symptoms. Joan eventually saw a different consultant and was diagnosed with Alzheimer’s and vascular dementia.

“The diagnosis was a bittersweet moment, but I am pleased as mum has been prescribed medication with a 60% chance it could help her, although I feel the best medicine for us both is that we have our relationship back – thanks to the good communication techniques taught to me by Empowered Conversations.”

If you would like more information about Empowered Conversations courses click here