When her father David was diagnosed with dementia at the age of 90, Maxine’s main challenge was the sheer distance between them. For whilst she lives in the UK her parents live in Israel. Here, she explains why cherishing their precious time together is so important.
Were there signs before his diagnosis that your father was in the early stages of dementia?
I wasn’t involved at the diagnosis stage because my parents live overseas, but my Dad had been confusing ideas for a while. As an engineer, his logical faculties were always strong and he could repair just about anything – he actually built my parents’ first washing machine and constructed a swing, slide and seesaw in our garden! But now he’s wrestling with trying to make sense of a reality that makes very little sense. Recently he confessed that he’s choosing not to speak as he knows he’s confused and doesn’t want to feel like an idiot. We’re all encouraging him to keep talking though so that we can keep him interacting with us. I often ask him what he’s thinking – hoping it will help if he can share and try to clarify what’s in his mind.
What happened after diagnosis?
I’m not sure of the details following his diagnosis but I used to visit my parents in Israel every few months and now I go more frequently. My sister Carole and her husband are supporting my parents on a daily basis as they live in Israel, but are still an hour’s drive away. My nephews visit whenever they can and Marcus, my brother, cancelled a holiday in Australia to be with my parents and support them too. So we are all doing what we can in our individual ways. I think the dementia journey is about accepting one loss after another – but of course my father can’t accept the loss of his mental faculties. The tragedy is that we know he’s not going to get better. My mother is holding onto the belief that he’s improving, which he certainly is after a fall a few weeks ago, but we are all ultimately aware of where this is heading.
David and his wife Jackie.
How did you tell other people and what was their reaction?
Everyone is incredibly understanding. Even for those who haven’t experienced this for themselves, they understand how painful it is to see an elderly parent struggle, whatever the history.
What were the main challenges you faced and when did they happen?
Living so far away is a huge challenge for me. I just want to jump on a plane and be close to him. I call at least once a day to hear the latest news, chat to my mother and hear my father’s voice. I think I do it as much for me as for him. My mother has shown extraordinary strength through this. She’s living on nervous energy, unable to let go of her need to hold onto the old ‘normal’ and for their home to be beautifully tidy. We’re all trying to help her, but it’s terribly sad to know that she’s losing the man she fell in love with over 60 years ago. When I left after our last visit, we both cried as we said goodbye. I’m seeing a very different woman from the mother I knew from childhood. I recently told her, with some irony, that I wish I’d known her when I was growing up! As for my Dad, he relives past worries and seems to confuse the strands of each one. I think we’re seeing the fear and anxiety beneath the old bluster that used to make us all quake! I forgave him a long time ago for all that, but now I understand how loss of control can so easily turn to anger.
Have any services made a difference?
My father now has 24-hour care and it hasn’t been easy to find a carer who treats him with the respect and care that we do. He is so precious to us, it’s painful to see a stranger trying to care for him without really understanding who he was. Fortunately, he now has a carer who is both gentle and thick skinned – essential qualities for the job. Dad also has twice weekly physiotherapy at home and his favourite exercise is to, ‘say yes with the toes, and no with the toes.’ The therapist has been giving him muscle-strengthening exercises but I think we may have started these too late.
Have any particular products or gadgets made life a bit easier?
The 24-hour clock displaying the day and time (including AM and PM) helped my father when he was confused with time. We’re also now using a bed alarm so that my mother and the carer wake up when my father gets up at night. This is invaluable. Memory games and reminiscing activities and conversations are also good. Even though my father finds them difficult, he says he knows they’re helpful. We’ve been reading him jokes too – they need to be short though. Amazingly, he can remember most of his times tables!
What lessons have you learnt and what advice would you pass on to other families?
So many lessons… Knowing that your best is good enough, that love really matters at every stage of life, the importance of looking after your own needs as well as those of others, and that people you think you know well can always surprise you.
I’ve seen how important regular interaction is – having visitors is a blessing for everyone. It takes the pressure off my mother, creates a diversion for my father and gives them both something to look forward to. Spending time with the grandchildren brings so much joy. I know it places a burden on the rest of the family, but all my nephews are amazing and visit as often as they can.
When communicating with someone with dementia, since their ability to focus is limited, it’s easier if they can see your face close-up. Address them gently by name to get their attention and hold their eye contact as you speak in short phrases, checking that they understand you. This is an exercise in pure mindfulness and it seems to have a calming effect on everyone around. To encourage my father into his wheelchair, having explained where we’re going, I ask for his hand as we sing Tony Bennett’s “Stranger in Paradise”. Singing is a wonderful way to engage the sensory right side of the brain, soothing and calming a person whose logical left brain is affected by the dementia. Watching my father sing and dance his way to the wheelchair is one of my cherished moments with him.
Has your experience of living with someone with dementia changed your perception of it?
Completely. It’s been a very steep learning curve. I’ve really appreciated how much patience is needed and how much easier it is to be completely mindful when the only thing that matters is that the person you love feels comfortable, safe and happy. The other day, when my parents were having an afternoon rest on their bed, I noticed that my father’s eyes were wide open and he was smiling lovingly at my mother as she held his hand. Perhaps that’s how 90-year-olds make love!