Dementia help/advise please. Is there anything you wish you’d done before you lost your loved one?

[FlorianTV]

sensitive topic

My mum is in the process of being diagnosed with dementia. We are very close and I’m absolutely distraught, she’s the heart of the family, she’s everything to myself and my daughters.

At the moment, she’s still here with good memories of the past and I’m wondering if you have any advice on things I can get her to do to help me when she’s further down the line. (Is this making sense?).

I’ve been looking for a diary, something she can write memories down in, and her recipes of my favourite food that she cooks (you’ve never tasted anything like my mums roast potatoes!).

Perhaps write some birthday cards for my daughters for their big birthdays (18,21). I’ll obviously ensure it’s all handled sensitively. From our discussions she wants to preserve her memories and ensure we think of her as she is now.

Those with experience- is there anything you wish you’d done for your relatives before you lost them completely to this cruel illness?

We are at the very beginning of the journey so any help/advice is welcome.

I don't have a relative with dementia but I worked as a nurse for many years with dementia sufferers.
I'm so sorry you and your Mum are facing this.
I think a diary of memories is a wonderful idea and will give you both comfort. Maybe also label photographs with dates, places and people. Your other ideas are also lovely. But short term memory often goes before longer term so things like helping her keep to a familiar routine, keep up with hobbies and activities, exercise and sleep will help. Big clock with a calendar with day, date and time. Calendar with important dates, birthdays in a prominent place.
People with dementia often find great comfort in reminiscing and so anything that supports that and reminds them of who they are and who loves them will be very important to wellbeing.
I wish you both well

I am so sorry. I have been down this road, and you sound much more clued up than I was. There is so much help and advice that will be available to you and if I had to do it again I would start with the Admiral Nurses website.

The one thing I would say from a personal perspective, and I say this very gently, is that please don’t see it as ‘losing’ her. She will still be in there until her last breath, it will just take a bit more effort to find her.

For example, what does she love doing now that is sort of ‘automatic’? Singing? Dancing? Painting? Bridge? My mum loved singing along with Hollywood musicals - she was able to retain the lyrics almost indefinitely! (And I could now recite the whole of ‘Oklahoma!’ to you, if required!) Keep hobbies going for as long as possible.

There is a lot of new research into how the brain works that you can read up on, social connections are really important for example, as is exercise.

And keep up to date with research and treatments. We found we knew more about this than her psychiatrist. You will have to advocate for her.

If she is only just being diagnosed you may have many years, and roast potatoes, ahead with her.

(I suspect you may be recommended the book ‘Contented Dementia.’ I found it quite patronising and limited in scope, both for the person who has dementia and for the carer. So be wary of it.)

I’ve been through this with two close relatives. There are a few books you can buy with prompts for memories like this one: https://amzn.eu/d/2T70zHc

Listen to the Talk Tracks episode on dementia.

I wish I’d heard this before my relatives got the disease. Maybe there’s something in it that’s useful for you.

sorry you’re experiencing this. It’s a tough road ahead but hope you find away through with love and support around you.

Talk Tracks link

Thank you for taking the time to write such a kind post, that’s full of useful information for me I will work through all of that. I really appreciate this, thank you.

She just loves being around us, talking about anything, as long as we’re together she’s happy. She does love pride and prejudice but she’s started to not recognise the actors in the bbc adaptation and it’s something she’s loved since the 90s.

Thank you for the ideas and advice, I’m sorry you’ve been through it too. You’re right about not ‘losing’ her, it just feels like that I suppose, but I can certainly readjust my thinking. You’ve been really helpful, thank you for taking the time to reply & advise me.

Yes, this book is perfect it’s exactly what I was picturing! Thank you for the links. Sorry you’ve been through this too.

my grandma lived with it for 15 years, but the last 5 years of her life were just so sad. Mum is so upset and worried that’s how she’ll end up but I’m trying to keep her focused on what’s happening in the here and now.