Today’s topic is going to be a little different in that it’ll read more like a debate than a blog post. Why? Well, like in many situations there are often two sides of every story, but when it comes to dementia, everyone’s is different.
While we all know that dementia is a progressive disease it could take years for someone to degenerate, as it is a terminal condition. Which means that as someone’s memory, cognitive function and motor skills lessen life essentially carries on. No one has the ability to stop time and so Birthdays, Christmas, Easter, Mother’s Day etc all roll around sooner or later.
To this extent, there are two schools of thought when it comes to dealing with these special occasions. The first is to simply acknowledge the day, taking your lead from your loved one with dementia especially if they may become upset or confused if they haven’t realised what’s happening.
Many people, especially those with a parent who has dementia, will either fudge the truth and say ‘oh you gave me a card already’ or ignore the occasion altogether. Of course, this is harder with ‘big’ holidays such as Christmas where decorations are up and their care/nursing home have organised festive surprises so a simple ‘Happy Christmas’ is lovely.
Image: Christmas with relatives – Photo Credit: Unforgettable.org
Don’t feel like you need to make a huge fuss if they aren’t too interested, or can’t remember why everyone’s acting differently just make sure they’re comfortable. Lots of people living with dementia become overstimulated and sudden noises like balloons, party poppers or loud music can become frightening. Again, take your lead from them and if they want to help with preparations give them something easy to do, perhaps folding napkins, sorting tinsel, sticking labels on card envelopes or just keeping you company while watching the Christmas tree.
Other holidays, like birthdays, or anniversaries require a little more thought but even if they can’t remember, you still do so even a bouquet of flowers or a bottle of perfume and chocolate works! Please don’t stop giving them gifts, and don’t wait for special occasions either. Even if it’s just a regular rainy Tuesday afternoon they have the right to play with something new.
Image: Activity Toybox – Photo Credit: Activities To Share
Depending on their level of understanding an anniversary is a wonderful opportunity to chat about the past. A special piece of music, item of clothing or even food could help them to remember bits and pieces. Again, take your lead from them and if a spouse or sibling has died it may just be easier to pretend otherwise. While some professionals do take a dim view of what is, essentially, lying is it worth upsetting someone who may not remember the next day?
We’re not saying to actively avoid difficult subjects but to please consider their feelings at all times. Occasions like weddings or christenings do bring great joy to a family but may make someone with dementia feel left out if they’re unable to attend. Don’t forget to send them their own invitation, even if they can’t accept it doesn’t matter, and the happy couple can pop in for a special visit later on. We know that depending on their illness, or even what sort of day they’ve had that they may not recall who people are but you know who they are don’t you?
Image: Bride and Father: The Spruce
Another thing we’ve discussed at the DC is presents, be it for your loved one or other family members. On one hand, some people are more than happy to buy gifts on ‘behalf’ of a relative with dementia for younger family members. Or to purchase something similar to what they may have given you for a previous birthday. After all, their argument is that should their loved one been able to remember they would have wanted to have given a gift, so why not carry on? Older kids will obviously realise that the gift isn’t really ‘from’ Granny but nonetheless it is given with love.
Image: Christmas Stocking Project
However, DC Founder, Emily-Jane Stapley has another take on the matter. Having been asked about it, she admitted she had made this choice without conscious thought and she admits her opinion may seem harsh to some. In her opinion, no one should ever expect gifts from someone with dementia, end of. She has never bought anyone a present on behalf of her mother. Why? Her mother isn’t being mean she’s got a terminal brain disease! After all, you wouldn’t berate someone who’s going through chemo for forgetting your birthday, would you?
Image: Mother’s Day Gift Guide – Photo Credit: MindStart
Emily says that she would use the situation to have an open conversation about dementia and why things like cards, or gifts ‘from’ someone it’s not is just not being honest. It’s not good for either your children or yourself. Another reason it’s not always a great idea to ‘pretend’ regarding gift giving is that it could backfire. For instance, imagine your child is given a present from ‘them’ but it’s actually been bought by you. No sooner have you taken your coat off, before little Rory starts talking about his new toy car to his very confused relative with advanced Alzheimer’s.
Rory won’t understand why his family are shushing him nor will his Grandfather have any idea what he’s on about. Cue Rory getting angry/upset, his family being embarrassed and Grandad going to bed feeling sad. Note, I said feeling sad because the emotions are all still there even if the memory isn’t. Dementia should always be spoken about, even the harder issues. Only then will people stop hiding behind excuses to justify why those living with it aren’t being prioritised.