Imagine living in a world where you are trapped within long ago forgotten memories. Imagine the dynamics of a room suddenly shifting, leaving you with a feeling of unknowing how you got there. That sick feeling in your stomach you get, when you feel you’ve forgotten something really important. Imagine forgetting how to make something as simple as a cup of tea. Scary thoughts? They’re my biggest fears. It is thought that as many as 50 million people worldwide are living with the life stealing dementia. This figure is predicted to double by 2030. Scientists believe that this exponential increase is down to life expectancy gradually increasing.
Our Nan is one of those unlucky people. It’s not something we dwell on and we certainly don’t allow it to affect our time with her, but it’s a tricky one. Mainly because we tend to have to find ways to stop the anxiety and anger which simmers away on the back burner. Talking to a friend of mine recently contextualised all this – made me feel reassured that as tough as it can be that we are not alone. And, it was this thought that made me think about the loneliness of living with dementia. What do we do?
You see, it can be so isolating; not only for them but for their loved ones too. When we first noticed the early signs it was tricky to understand. You, when seeing someone you love flailing, want to protect and control to a certain point. However, it’s not that easy. Your ill fated attempts can hamper and anger them. You become upset and make excuses for them and that can trigger resentment and tears. So what do you do? Ignore the signs? Pretend they’re not burning the dinner on the hob and bury your head in the sand when you spot the lost look on their face when you talk about a shared memory?
When Nan first started to show signs it was quite traumatic for all. She’d go into a spin and want to go all 100 miles home from the restaurant we’d be eating in – and right that minute!! Now, I say traumatic, but to be honest it wasn’t the fear of why she was reacting in this kind way, it was more the fact she was behaving in such a demanding and agitated manner. There would be no negotiating. Off she’d go and leave the remaining family members in floods of tears. After this occurring on many occasions I decided that, as I always do when faced with adversity, to arm myself with facts and try to understand how she felt.
After reading lots online and arranging a meeting with a brilliant advisor at Age UK, I finally came across a book called ‘Elizabeth is Missing which was the ironically ‘missing’ piece of the jigsaw; filling me with guilt and understanding in equal measures. You see, to be able to cope with such a scary journey I needed to understand. What it did for me was open up a capacity for compassionate feelings I never knew I had. What I’d selfishly done was look at the whole situation through the family’s eyes – needs even, rather that viewing it from her perspective. This left me feeling utterly ashamed that I had tried to make her do on numerous occasions. When, in actual fact, she was just scared. She just needed reassurance.
That was then and this is now. Four years later and happily she still knows who Him and I are. Not so good is the list of stuff she doesn’t know; most heartbreakingly, the children. So, how do we get over that fact when we visit her? Him’s inspired move is to get
Nan’s box of photos, letters and pictures out and get her to talk about what she sees. What this does is help prompt lots of happy memories and stop her dwelling on sad memories which seem to linger in her mind. Dementia kills off the short term memory so it’s the stuff of your longer life that seems to stay with you. Sadly, most of us have times in our lives we’d rather forget and the bastard dementia can’t help but bring it all back. What is hard is to pull her back from these stories but the box does help.
What also helps are the amount of pictures and gifts she has displayed all over her house. One such photo is of Him and Nan on our wedding day. She looks radiant in a beautiful pink hat – grinning next to her precious grandson, after she’d just finished dancing with the singer of the jazz band. That image, to me the person who didn’t want a great big fussy white wedding, is priceless. A wonderful happy memory that makes me glad we invited, what it felt like at the time the whole of Yorkshire (to please Nan. Long story short. Us: Nan we’re inviting so and so to the night do. Nan: they won’t come all that way for a chicken leg. Suffice to say chickenleggate took the numbers up significantly) to our big fat wedding. How glad am I we put her first? Immensely.
Sadly, part of this illness has confined her to her home. She is nervous to go out alone – we think she’s got lost in the past, and now the outside world scares her. This can make it difficult for her to visit. We’ve been limited for a while, to going over at weekends and holidays, whenever possible. However, we’ve recently had a bit of a breakthrough. We’ve realised that making new memories and going to places that hold no real meaning have given her a new lease of life. She loves coming to the new house and she loves Rosie Dog; having a mutual calming effect on each other.
This all ties in with recent advice and research that suggests we keep not only ourselves fit and healthy but our brains too. The usual stuff of: alcohol consumption, diet, exercise, smoking etc. sits alongside advice to read, do puzzles – give your brain a daily workout. It seems that to fight it you have to keep challenging your thought patterns and allow your brain the experience of learning new stuff. I’d say the old adage ‘you’re never too old to learn’, couldn’t be more true. The brain and body needs to keep active to stop it all shutting down. On that note going to spend time with my beauties, walk my doggie, cook a lovely Sunday lunch, read my book and try to forget the amount of wine I drank last night (oops).