Five things I learned from my parents’ dementia

Between 1990 and 2000, my father lived with Alzheimer’s and vascular dementia. A few years later, my mother started showing similar symptoms and was diagnosed with exactly the same two conditions.  Here are some of the things that living with and loving them during that time taught me….

Being right isn’t always what matters.

It’s not worth contradicting someone who is losing their memory unless you absolutely have to. In the last few months of her life my mum starred in a movie, robbed a bank, fought with the Canadian army, sneaked a train ride to London without paying the fare and had an illicit night in a hotel with a strange man, all whilst apparently bedridden in a nursing home. She liked to tell of her adventures. We liked to listen to them. It was a relief for all of us not to have to quibble about what was actually ‘true’.

Memories are good, but so are lots of other things.

Memories are good but so are cuddles, hand-holding, singing, armchair-dancing, eating ice cream, pretending to be farm animals and numerous other things. It’s ok to be silly, ok to find ways of connecting that don’t require language, ok just to be here, now, without reference to what went before, without planning what might be to come. Many of us could probably benefit from doing more of these things anyway.

You’re allowed to feel whatever it is that you’re feeling.

If people haven’t lost someone they love to dementia, they may not understand when you grieve for someone who is still alive. We expect it after a death, but are less familiar with the kind of protracted heartbreak that comes from relentless, incremental loss. However, just because people around you can’t always empathise, don’t imagine for a second that you are not allowed to grieve. You’re entitled to feel whatever it is that you’re feeling. Don’t give yourself a hard time for that, on top of everything else.

It’s important to look after yourself, for everyone’s sake.

This process can last a long while so it’s worth figuring out how to keep yourself sane and healthy along the way. I say this with feeling – because I didn’t. So take time out. Don’t try to be superhuman. Know that it’s ok if you can’t visit as much as you’d like, if you can’t fix things, if you need to say no sometimes. If you go under, you won’t help anyone – you’ll just get shouty and resentful and hate yourself and everything will be harder than it needs to be. When you are gentle with yourself, you improve your chances of being gentle with your loved one, no matter what they do or say. So if you’re not great at taking care of yourself for your own sake, then know that you need to do this for theirs. Remember to eat and drink and sleep and cry and find kind people to lean on as necessary. Do fun things and laugh – yes, laugh, as often as you possibly can. And finally – ask someone else to buy the birthday card you know your loved one would wish to give you if a) they knew your birthday was coming up, and b) they remembered who you were, and get them to coax a wavering signature and seal up the envelope so that, when the day comes, you can look genuinely surprised and delighted to receive it. Don’t do all that yourself. It’s just a bit too hard.

Beautiful things can be found when you least expect them.

Sometimes, if you’re lucky, you can discover beautiful things in your loved one that you didn’t know were there. A playfulness in someone who was driven and uptight. An ability to show physical affection in someone who was aloof. A rebellious streak in someone who was always impossibly ‘good’. Whatever you can find to enjoy – enjoy it. My dad was a strict man and, as a child, I was often scared of him. During his illness he became softer and sweeter, less materialistic, clearer that all that mattered was his family – even as he stumbled over our names and, eventually, forgot who we were. One day I arrived home to find my parents standing together at the doorway. “Have you met my wife?”, he asked. His eyes shone as he ushered us together, so proud to see two people he loved meeting for what he thought was the first time. Back then I could only see the sadness of his forgetting. Thankfully, years later, all I can remember is the love.