Don’t be alone with this!

Empowered taught me that Tommy’s world is fine, his world is wonderful, but I need to do little tweaks and adjustments to my world.

Tommy will be 88 in August, he has vascular dementia. Tommy married the love of his life, Marlene, when he came out of the forces at 22, Mum was 19. They’d been together since they were 14 and 15 years old.

Tommy and Marlene had ‘the perfect family’ with two daughters, Anne-Marie and Alison. When Marlene was 46, she had a couple of falls and a few other incidents and was diagnosed with Multiple Sclerosis. Tommy gave up work at 50 to care for Marlene, ‘he was amazing, he’d wake up every hour to help mum to turn so that she didn’t get pressure sores’. He was the most amazing carer to Mum.

Marlene died when she was 61, the grief was almost too much for Tommy and he leant on Anne-Marie for support. Alison was 10 years younger than Anne-Marie, Alison took her mum’s death badly. Anne-Marie felt she needed to be strong and support her dad and Alison, as well as her own family, husband Geoff and son Paul.

Tommy was diagnosed with a brain tumour after a couple of passing out incidents, an operation would have involved a 14-hour surgery and then a long process of re-learning almost everything. He decided against it, ‘all he wanted was to watch his grandson get married’, which he did 8 years ago. He moved into Bourke Gardens in 2017 and really got involved there. He is a brilliant singer and loves the Rat Pack and would sing at charity events, he’d even go over to Costa and help the staff set up the café in the morning. He was such a sociable man.

‘Covid was a tough time for dad, he lost confidence, he became withdrawn and then I started to notice some changes, his personality changed, he got confused, a bit forgetful, he lost his road sense. I called the doctor out thinking it was to do with his brain tumour, dad was adamant that he didn’t want to go to hospital for a brain scan and eventually was diagnosed with Vascular Dementia’.

In April last year Tommy fell outside the flats, Anne-Marie convinced him to go to hospital to get his wrist looked at. His wrist was fine, but a scan revealed some bleeds to his brain and a fractured cheek bone. Tommy stayed in hospital in EAU for 9 days. This was a real tough time for Dad as well as the family. ‘The staff were brilliant with him. When we went to pick him up to go home, he became really upset and distressed. The staff were very understanding about Dads condition and asked us to leave him to rest for now. They called us later that evening to say that he was ready to go home and we collected him,

How did you find out about Empowered?

Last October I got a pain in my side, Geoff told me to go to the Doctors, and I was diagnosed with shingles. I broke down and started crying, the GP gave me some numbers and told me I needed to speak to somebody, I reached out to Age UK Salford. I was at an all-time low, but I didn’t realise it. At the time dad was ringing us constantly through the night, we live around the corner, so we’d go round to calm him down. I was exhausted, I didn’t see it, but my family did.

I opened up to Amanda, I’d been holding everything in. I was worried that I was going to explode, I didn’t want my family to worry. I thought that if I held it all in, I could get by.

What was the hardest thing back then?

I felt like I was running two houses, I had to think about both houses when I was shopping. the bank, appointments etc. If I went away, I had to have everything in place for him. Alison lives in Preston and comes down twice a week, which is a massive help. I felt wholly responsible for dad though and felt it was all on me. When I think about it, the fall in April really triggered all of this, the relentless phone calls, becoming more reliant on us, walking over in the middle of the night to help him. Geoff is amazing with dad, we’ve been together since we were at school, his dad died when he was 17 so my dad became a father figure for him.

What advice would you give to other people who are caring?

Get as much support as you can, without it I’d have gone under. We are a close family. We have a great relationship with our GP. Don’t be alone with this. Take each day as it comes and don’t take anything to heart, I know my dad loves and adores me, but we do have Tommy 1 and Tommy 2. so no two days are the same.

What’s changed since you started getting support from the team?

I have a better understanding of what is happening with dad. I understand a lot more of what’s going on, the bookcase analogy was a light bulb moment for my family. After every Empowered Conversations session I would send the email and links to my family or I’d call them, it helped them understand why dad was doing things or getting mixed up.

I have never lost patience with dad but now I do things slightly different. If he’s getting upset, we use photos as a distraction, try and get him to talk about the music he loves or the book he is reading. Dad doesn’t know he has dementia, he puts it all down to his ‘walnut’ (brain tumour).

Empowered taught me that Tommy’s world is fine, his world is wonderful, but I need to do little tweaks and adjustments to my world.