Julia Shaw shares her experience of caring for her dad Don who was diagnosed with dementia at the age of 81. He died in October 2015, aged 85.
How was your dad diagnosed?
‘He was diagnosed with dementia by his psychiatric team in the middle of 2011. Dad suffered from bi-polar disorder and had been seeing psychiatrists for several years, but he still had a great capacity for enjoying life. He loved to walk and play golf, he took a keen interest in politics and current affairs and read newspapers avidly.’
Looking back, were there any signs before that he was in the early stage of dementia?
‘It was difficult to tell with my dad. He’d had episodes of confusion previously when he was ill with bi-polar and the dementia kind of crept up on us all. In 2010, the year before he was diagnosed, Dad was admitted to hospital for a knee replacement but he had a few falls whilst recuperating and lost his confidence walking. When he was discharged he became ill with a urine infection and was rushed back into hospital where he started ‘clawing’ his hands and feet and was very disorientated.
‘The whole experience was traumatic and Dad was never the same. He became incontinent and lost his mobility completely. When he got back home again he was in a wheelchair, had to be hoisted in and out of bed and have carers visiting four times a day because Mum couldn’t manage on her own. His confusion also increased so the dementia diagnosis, when it came, wasn’t too much of a shock.’
What happened after diagnosis?
‘Despite everything, Dad still had many lucid moments. He continued to read his Guardian newspaper nearly every day, he loved watching Countdown and listening to Poetry Please. He remembered our names too, though he did sometimes get a little muddled over his grandchildren’s names.
‘However Dad suffered quite badly with Sundowner Syndrome – his symptoms visibly worsened as the night drew in and he could get very shouty and confused, demanding Mum’s attention all the time. She found it very upsetting and the constant washing of his sheets was exhausting.
‘I have two sisters, and thankfully we all lived fairly near and helped her as much as possible but I often found her in tears at the kitchen table. ‘I can’t take it anymore,’ she’d say. But she still refused to let Dad go into a nursing home – as an ex-nurse she was determined to care for him herself. We muddled along like that for over a year, but the situation got worse and worse.’
How did you tell other people and what was their reaction?
‘Most of Dad’s friends had died, but people’s reactions were very good. His sister found his dementia upsetting at times, particularly when they spoke on the phone and Dad would talk as if her husband was still alive, and she would have to go along with it. But she was brilliant with him, sharing memories from their past, or talking about things they’d done together as kids.’
What were the main challenges you faced and when did they happen?
‘Dad’s time at home with Mum when he was first diagnosed was very challenging for all of us. We were worried about Mum’s health too and dealing with the daily problems impacted on ours, and our families’ lives. It was infuriating trying to get the right care for them both. My sisters and I felt like we were banging our heads against a brick wall because there were so many obstacles, so much form filling, nothing was made easy.
‘We met some brilliant, and some not so brilliant carers, but their visits were generally very rushed. They often wanted to do more, but just couldn’t because of time constraints.
‘Persuading Mum that a nursing home might be the best place for Dad was incredibly difficult too. She did finally concede, though she found it heart-breaking when the time came. We found a care home where the physical care was very good. The dementia care was okay and Dad’s symptoms seemed to improve. They also put him on a special diet, (he had Type 2 Diabetes) so he lost weight and his mood seemed to stabilise. He seemed contented and we had some very happy days out with him and Mum during that time. Mum visited him every day and insisted on helping with his care – and the nurses and carers were very understanding.
Don and his wife Adele‘Mum died in February 2015 and one of the most difficult challenges was deciding how to tell Dad. My sisters and I went together to break the news. We’d already told him she was ill and in hospital, but when we said ‘Mum has died’; he looked shocked and thought we were talking about his mum (who had also died many years before). I went through it all again and explained that it was his wife who had died. He was devastated, but soon forgot. He was at Mum’s funeral, but didn’t remember it. Afterwards, he’d sometimes remember she had died and we’d look at pictures and talk it through, and other days he didn’t remember and we’d pretend Mum had just popped out shopping.’
Have any services made a difference?
Dad was entitled to subsidised taxi travel because of his mobility issues. The taxis were useful but we were let down a few times and had a very surly driver once who refused to take dad because he was in a wheelchair. So we ended up buying a mobility car for us to drive him.
Have any particular products or gadgets made life a bit easier?
‘Dad tried a large key phone, but found it too confusing. At home we had slip sheets to help the carers get him in and out of bed, and loads of lotions and potions to keep the bed sores at bay.
‘The nursing home ran lots of activities aimed at the people living there, Dad didn’t always like joining in but we did ‘pub quizzes’ together which he enjoyed. Familiar products helped enormously. For example, Dad loved a laugh and still managed to read his Private Eye which he’d subscribed to for years – the cartoons in it gave some light relief when he didn’t feel like reading. It was a great talking point and kept his mind alert.’
Any tips for other families or advice you’d like to pass on?
1. Sit back and enjoy the time travel
Most of the time Dad was in the nursing home he thought he was at work. He often told me he was attending a conference. He’d often say: ‘they’re a bit sleepy today, it’s been a long conference,’ as fellow residents dozed in their chairs. He would also get agitated about missing meetings and I would often ‘talk him down’ or pretend that I’d rung and cancelled the meetings for him. I’d just say: ‘you’re semi-retired now Dad, you’re allowed a day off now and then.’
2. Be creative
I always had a bit of a battle with him about his car. He had loved his car and would tell me it was parked in the nursing home car park and that he was driving up to see his sister soon. So I found some old car keys and kept them in a drawer in his room. Simply handing them to him seemed to comfort him.
3. Try not to let them see you are upset and frustrated
You will feel like that at times, and that’s fine, they may infuriate you, but they can’t help it. Take a deep breath and count to ten.
4. Nothing beats watching an old, favourite movie
Or listening to music – it’s great for bringing harmony and a few smiles. Dad loved classical music and opera and we enjoyed watching the Proms together.
Has your experience of living with someone with dementia changed your perception of it?
‘Definitely. There are so many different dementia strands, it has helped me understand and empathise. My dad’s dementia, although difficult to handle at times, was fairly manageable, on the whole. He still recognised me until the end and we were able to have lots of laughs and loving hugs. I feel blessed to have been on the journey with him.’
What lessons have you learnt?
‘To fight to get the right care for your loved one and to be patient with them, have a laugh and give them lots of hugs. And don’t to be too proud, embarrassed or obstructive. Go on that memory journey with them. Why not? It doesn’t matter if you feel silly because it’s not ‘real’, who really cares? In the end, it’s love that matters – not how accurate your memory is.’