To ask for any positive stories about dementia

[Flutterbylittlebutterfly]

I know I'm probably asking the impossible but desperately seeking some hope and possibly a hand hold. I know I'm probably BU to even ask as it's a bastard of a disease but wanted traffic.

My lovely dad has just been diagnosed with dementia. He's in the early stages at the moment but the progression already since symptoms first started have been quite quick. We watched my DGM die from the same thing and I just feel devastated that it's happening again. At the moment I am catastrophising and really spiralling. I don't know how to best support my DF and am so scared of the "known".

DGM became very aggressive and unsettled in her final years and I am dreading this is the path laid out for my DF. Does anyone have anything positive, happy or helpful to suggest navigating this going forward. I just feel lost and like there is nothing but misery ahead.

Sorry there is nothing positive I could possibly find to say about dementia, after watching my Mum suffer from it.

I am also at the beginning of the journey with my mum, I think all you can do is take it a day at a time and enjoy the good days. mum is about to start on medication that will hopefully slow progression- and in terms of positive stories my optician told me the medication was very effective for his mum so I’m pinning my hopes on that for now.

My mum also got dementia. She was sweet natured and had a sense of humour till the end.

I wish you the best. I hope it will not be so horrible this time.

It depends on what type of dementia
DM has Alzheimer’s and went on medication to slow down progress - she was diagnosed 5-6 years ago and still manages to live alone in own home - although we did have to get a care package last year
She was always quite difficult and it’s actually improved this - she doesn’t stress as much as she doesn’t remember her worries
I realise it will get much much worse - but hope that she dies of something else before it deteriorates to that point

There’s not much cause for optimism I’m afraid @Flutterbylittlebutterfly but try and identify what still makes your dad happy amd do that for him. For my dad, it was listening to bands he’d loved for decades so I bought him a boom box and cds. He had a good appetite for a long time so I bought him a bumper pack of biscuits. I took my dogs into visit him because he adored dogs. He’s past almost all of that now sadly, but I liked doing it for him when it was still meaningful and brought him pleasure.

My lovely mum in law was diagnosed with dementia, and to be honest it wasn't too bad on the whole.
Once she started on the medication she really did improve for a few years.
I suppose everyone is different though.
She did go through an angry slightly aggressive phase for a few months, but that was replaced by her sweet self.
Sorry to anyone going through this.
We just took it one day at a time

I have known some people appear fairly happy with dementia(no idea how they felt, if they realised they couldn’t remember, if they found it undignified not knowing if they needed the toilet etc). However I have known a lot more become very unsettled, violent, aggressive, swear, personality changed, one man constantly relived the war. Dementia is awful.

I used to work as a staff nurse on a dementia ward, there are different types of Dementia and call have subtle differences in presentation sadly there is no real way of telling how Dementia can affect a person
I have known some patients who are highly distressed a lot of the time but on the side some patients present as happily confused, more in a world of their own and unaware of anything distressing.

This isn't positive so much as practical. Now you know what's coming, get ready. Make sure you have power of attorney so you can manage things for him. Take photos. Ask him about family things while he can still remember. Treat him to things he really likes because dementia patients can still take pleasure in the moment eg a favourite food. Get help in so you can enjoy the good days and aren't always firefighting.

There is nothing positive. However, being prepared is the best advice I can offer so you don't spiral and add to your distress. My dad didn't cope well with my mum's dementia, only seeking help when things hit truly awful stages and was beyond him to do anything which in turn caused him a lot of distress. If I were you I'd start with the GP and see if you can get help from specialist nurses or agencies to plan for the inevitable. At some point he'll need full time care. He might be able to access dementia friendly groups. I still have the fruit bowl my mum painted when she was in early stages. Good luck 🤞

My close colleague’s mother in law has it, fairly late stage, and she’s not too bad. Very removed from reality and can get anxious. But largely pleasant and calm.

Thank you all for the practical advice and stories of calmer experiences. I'm so sorry to all of you who have also been affected by this horrible illness.

My dad has Vascular Dementia.

I've found this book enormously helpful. It basically says that the person with dementia now lives in an imaginary world, based on their previous life, and that if you can join them in it then you can have a lot of fun there with them. It works with my DM and we have happy time living in her daydreams together.

www.amazon.co.uk/dp/0091901812?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_1

My df was diagnosed a couple of years ago. It's still quite mild but I've noticed he's "losing his words" more often recently. He's 90 in a couple of weeks. Sometimes I think, for a few seconds, maybe it would be better if he dies from something else before he gets too bad. But then I don't fancy that much either. ☹️

I worry for my dm who is his carer and is elderly herself and has mobility issues.

I think you do have to take it one day at a time because you drive yourself mad otherwise. It's pretty difficult to predict the trajectory as well.

Df is taking pills too but it's hard to know what difference it makes. What he'd be like otherwise.

I'm so sorry you are going through this - it is a bastard of a disease. I lost my lovely Dad to alzheimers 14 years ago. Obviously there aren't really any positives, but there were some things I took comfort from.

Firstly people are affected in different ways, not everyone becomes aggressive. my dad didn't, I'd say he became more anxious and would worry about things and have to be reassured. (My MIL who had vascular dementia never became aggressive either).

Even right to the end, I used to get glimpses of the sweet gentle clever funny man my dad used to be, it was as if there were flashes of lucidity and he'd say something that would make me feel 'he's still in there somewhere'. He also knew who I was until pretty close to the end (although he often thought I was still a child) but he knew I was his daughter.
He still found joy in life, often just small things, - playing with the dogs, or cuddling and singing to his infant great grand children (he always loved babies, and they loved him - we used to give him ours when they were being fractious and they'd quieten down straight away)

He had alzheimers for 9 years before he died, and it was gradual, the last two years were the most difficult. But after he died, even though we'd lived through the years of him being ill, the memories of his illness sort of faded away, and all my memories of him are wonderful happy ones.

It is a challenge to deal with and there are ups and downs along the way, I send you and your family love and strength for the road ahead.

I don't have anything positive to say, unfortunately. My dad has Alzheimer's. He went into a care home last year after a fall. He declined rapidly in hospital. Before he would sing and ask questions. Now, he just sits and sleeps all day and is now nearly nonverbal. He's also in pain.

Make the most of early stages.

My Dad had dementia and for a long time, with my mother’s support he lived pretty well. Has she been willing to access more support from outside then it might have been easier for her.

When he did suddenly decline to a point where he needed residential care it was very hard. However, even then he would respond to my voice, having his hand held, certain music and a steady stream of chocolate buttons. He might be sitting with his eyes closed looking quite asleep or removed yet if I asked him if he was listening he would often say ‘yes’.

The last time I saw him just before lockdown he was in a poor way and pretty unresponsive but when I left I said I had to go a catch my train he opened his eyes and touched my face. It was like a tiny bit of magic. He died a few weeks later.

As pp have said enjoy the time you have, look at photos, reminisce- usually long term memory is far better than short term. And if you start feeling impatient or cross leave the room and recalibrate.

Best wishes.

My DH has it (vascular dementia) and, sadly, no positive stories here. All you can do is prepare and make sure you look after yourself as well, which isn't always easy. However - as previous posters have said - there are different types of dementia and they affect different people in different ways. Take it one day at a time. Sending a very un-mumsnetty hug.

Thank you so much. I feel I worded this so clumsily as obviously nothing positive can really come from it.

Some of these posts have been excellent at reminding me to take a day at a time. One of the things I'm most worried about (perhaps selfishly) are my memories being forever tainted by this time. It's so lovely to hear that your happy memories shine through.

I used to work in a care home and it's so different in everyone. All I'd say is make the most of the good days. My own Dad died from cancer and it was a brutal swift decline but I've got lovely memories of sitting with him in the hospice - one afternoon he was watching the horse racing on the TV and trying to get me to open a Paddy Power account so he could place a bet! There are always chinks of light in the darkness

My DGM had it and spent 4 years in a care home. She had a vague recognition of us, but didn’t speak so maybe she was just smiling like she did for the whole 4 years. She was never upset or distressed, she ate well even putting on weight. At the end she just slept away really peacefully. She did however transfer her ‘affections’ to the care home staff but they were there 24 hours and tbh we were just happy she was happy and safe.

Sorry to hear this. My grandma had dementia which was hard for her and us all, and I work with people with dementia. Some become distressed however others become calmer and content. Environment, support and positive interactions make a huge difference. I would recommend reading about how to communicate well with someone with dementia and make interactions positive. There's an online course by a charity called Understanding dementia which is excellent and focuses on wellbeing.

As for positive stories - one client of mine had been agoraphobic and at home for 20 years then forgot this when he got dementia and now leads an active life! (with support)

If you need to choose a care home in the future, focus on the care provided rather than the building itself. Are residents treated with respect and cared for individually?
Are activities appropriate and supportive?
Are there opportunities for socialising?
Are residents just plonked in a day room with a tv on and nothing else happening.
If there are residents with unwashed hair, long fingernails and unshaven get out there quick

With vascular Dementia you might find he fluctuates in how he presents and he might have good and bad days.

My dad was diagnosed with Alzheimer’s three years ago. I know it’s relatively early days but he still lives independently, still takes a lot of pleasure in food and conversation (he doesn’t know it’s the same conversation we had three minutes ago…) and his dog, watching sports and films, seeing his (very understanding) friends. He’s always been a wonderful supportive dad and he still is - if anything, my partner reckons, he’s become even nicer.

One big piece of advice: try your hardest not to say ‘no that’s not right’ or ‘no you’ve got muddled up’ or ‘I’ve already told you this’ etc. as pp said, try to join him in his world; don’t constantly be pointing out to him that he’s wrong and confused. It doesn’t help and it causes anxiety and upset.

small piece of advice: if your dad likes films or books, he might lose his ability to follow new plots - but he won’t necessarily stop enjoying the things he already knows well. My dad can happily watch his favourite films over and over again!

@Flutterbylittlebutterfly It's a horrible thing to watch a loved one go through.
My Grandmother suffered for many years.

By the time I was late 20s I looked like one of her friends, she saw me as this friend called me by her name Jess.
I learnt so much about her. I listened and played along with her. The things she told me she never would have told a granddaughter 😂
Like the quicky she had up the back ally with my grandad after a night dancing, or the time her and her friend slept on the train platform after hiding in the back of some bands van 😅

The best one was just walked in to do the visit and do some cleaning as I did twice a week. She turns to me and says.

GM - Jess, try the whiskey
Me - Mary its 10am
GM - I did not ask for the time Jess, try the whiskey there is something wrong with it!
Me - okay we have have a short with lunch

We had a short in the garden with lunch.
Aww I tasted the issue 🤐nipped to the loo and rang my dads sister - who explained that GM had developed a drink habit in the evening and would have a tipple. Then forgot she had a tipple and would have another and so on. So they were watering down the booze.
GM couldn't remember what day of the week it was or who you were but she knew the spirits tasted wrong.

She became my friend by the end, it was hard to accept I had a different role in her life now. I will be forever grateful for the GM -GD relationship I had with her growing up and then the genuine friendship we had at the end. Yes she may not have remembered me as her granddaughter but she loved me as Jess her childhood friend.