Support thread **New** let’s get together and feel all right... For anyone with a relative suffering

[TheGateauIsInTheChateau]

Rant, unload, do what you need to do here...

Can only quote the last thread really...

“Welcome to the thread no one wants to be on, but we are all travelling with our loved ones along their journey with dementia.”

DH went over there today. He said they looked through photos together. She asked about the connection certain people had to her, including her late husband. DH explained. He put his arm around her and she held his hand. She didn’t recognise her current DH in our wedding photos from a couple of years ago.

DH said her hobby room is full of photos of him as a little boy, and up through his teens to his graduation, he said he wonders what she must think when she goes to this room full of photos of people she doesn’t recognise...

I had a FaceTime with my own DM today, I explained what was happening with MIL and she immediately turned the conversation on herself, saying that could be her. Frustrating.

Hi all, hope I can join? My dad was diagnosed with Lewy Body dementia a while ago and now lives in a specialist nursing home. Which in some ways makes life a lot easier for me and in others is much harder... it's two hours away so visiting can be tricky.

I've managed OK-ish up to now; but had a particularly rough time last week with his birthday. He usually has a patchy idea of who I am, but on some days he hasn't a clue -part and parcel of the illness really. On his main 'dementia days' he can't really connect with anyone - sad to see but doesn't come out of the blue.

Except last week when he had no idea who I was, sat looking vacant while I wittered on about pointless things, looked kind of puzzled when I brought out his birthday cake and shrugged it all off - par for the course. And then the nurses brought out a bigger cake, at which point he lit up, chatted away to the nurses and the patients, and told me to go away just as the nurses were telling me to stay! sing! take photos! Plastering a smile on my face and singing "Happy birthday to you! Happy birthday to you!" while Dad asked "Why is this woman here?" was just awful..

Hard to accept that I am a stranger to him now, and the people he sees every day are people he can connect with. There's not a shred I can do except keep going to visit each week, talk crap to him for an hour, and go back home in time to pick up DD from school.... I hate myself for feeling so deflated by it all; after all, what on earth did I expect?

@permanentlyexhaustedpigeon

It’s a cruel illness, one of the cruellest... sending you a big glass of your favourite poison... i’m so sorry you’re going through this. Only thing you can hold on to is he’ll have his good days and remember that you bring him joy (even if he doesn’t quite know where you fit into his jigsaw puzzle of a map)

DH spoke to MIL last week, she was in a bad mood, he heard her in the back ground before FIL handed the phone over saying “stop saying that - I’m not his mum”
The One Show has a feature on Dementia on Friday, DH (together 8 tears, never seen him cry) was in bits. My heart just absolutely bleeds for him.
They were over this weekend, she went to the loo, FIL seemed relieved he could talk to us for 4 minutes about it... I think it’s grinding him down, he said it’s difficult for him to get her to wash now. DH is going to try and get over there each week.

Hello,
My husband has some sortcof dementia. Not formally diagnosed but quite advanced. He doesn't really understand who his children are. Life us pretty difficult but I'm trying to keep it as normal as possible for every one. It's nice to have somewhere where people are in a similar situation. Not that I'd wish it on any of you xx

Joining please! MIL has very recently (week before Christmas) been diagnosed with vascular dementia. She is 70.

She's ok 90% of the time, but has had a few episodes where she's forgotten where she is (at home) or who FIL is. She's been very upset by these. We're staying with them for 5 nights & 1 happened today.

DH is struggling with it. He was rather depressed for a couple of weeks, not wanting to go out or do anything & just sleeping a lot. His first thought now is always MIL, whether we are with them or not. He also will either talk about it for hours or not at all. I don't know how to help him

When we come to visit them we stay in their house, with our 3 Dses of 10 &under but I think this is too stressful all round. DH won't hear of doing anything else as he wants to spend as much time as possible with MIL before she doesn't recognise him.

Any advice on these issues?

Hi all
Joining you sadly
My dad has been diagnosed in middle of 2018 aged 66 and deteriorating pretty quickly
My mum (62) can't cope with him at home as he really can't manage any self care already and after a few respite stints is probably going into permanent care early in the next few weeks
It's the right thing for them both but really bloody hurts to think of him in a care Home!!!
I am doing my best to be with my mum and support her but it's so blooming hard it's just a horrible nasty disease
Sending love to all in similar positions xx

Hey there, my nanny (granny) has dementia of some sort and was diagnosed a couple of years ago. It has been really hard to pinpoint her symptoms as she has had strokes and heart failure within the last couple of years. she cannot speak anymore although she really does try but it just is a mumble that no one can understand. My auntie thinks she may be in the late stages now as restlessness, toilet trouble are now being joined by eating difficulty and hitting which is really hard i know its not her and it certainly is not her fault as they can get so confused and stressed. Even though im not a carer (my mum & 2 aunts are) it is so hard to watch esp as i grew up so close to her and even over past few years a see a massive change in her so i really do take my hat off to people that take care of their loved ones with this cruel illness
No real point to this post i just needed somewhere to go at this time of morning its funny how during the day live carries on and you can get through but once its dark and your head hits the pillow the thoughts and sadness come flooding in
Massive hugs to all of you dealing with or supporting someone you know dealing with this

Can I join you on your thread 'that no one wants to be on'?
Had call from my Dad's care home that he was violent to 2 members of staff today. He would be mortified if he could see who he's become. Beyond sad.

Curly I have no idea how you cope with that. to both of you.

Was really crappy day. He didn't recognize me but kept saying that my brother always comes to see him. He doesn't. Keep telling myself that this whole situation isn't about me. But it still felt sad today.

Actually felt sad for all the other residents today.

Massive hugs @Curlygirly its never easy but these days can be the worst

My grandad is getting worse, and my grandma, his ft carer, is refusing help. I'm worried about her, but more so my mum who, as an only child, is breaking her neck to support them while my grandma dismisses the idea she needs any help at all (and is pretty bloody nasty to my poor mum). I've just had an operation sos can't help, akso two young dc. So my mum is also helping me as I'm bedridden for some weeks, can't drive for another 5 weeks etc. It's all so futile, we don't even know what help to suggest, grandma says he wouldn't stay in with a stranger but also won't leave the house to go to a group. What can we suggest to help?!

Meanwhile MIL is in a home very close nearby (thankfully) and seems to ne deteriorating, now barely speaking. Cruel, cruel disease, and heart breaking to observe in people who were so independent only a few years ago

@tiredmoma thanks

@pillowaddict would your Grandad got a group of your Grandma also went too?

*go to a group if your Grandma went with.

Pillow - Alzheimer's Society?

Are there any memory cafes near you?

I will lurk about as my MiL is waiting on being referred to a memory clinic. I'm getting frustrated about how long it's taken. In-laws moved a long way away late last year, which has made seeing what's going on difficult.

FiL doesn't seem to grasp quite what's what and said last week, "MiL doesn't want to chase..." MiL can't remember the initial GP visit, I suspect...

Hi, thanks for suggestions. The difficulty is that she is adamant he won't and so won't try. I can't pretend I know better, she lives with him 24/7, been married 60 years, she gets annoyed if I try to tell her what to do with or about him! But I will suggest again. My mum had been in touch with an organisation like Alzheimers society, so will chase this up.

Blimey where to start.

Mum has vascular dementia, dad has heart problems. He had a turn over Xmas and went into hospital for 2 weeks. Pacemaker fitted and now needs a double heart bypass. Thankfully me and my db were there visiting so we took it in turns looking after mum. She can’t walk, eat, wash, go to the loo on her own now. She needs 27x7 care. She wakes and gets up between 3 & 7 times a night and someone needs to get up with her as she can fall, hurt herself, soil herself, trouble is dad is her Carer and they retired and moved 7 hrs away from me and my bro. Both of us have full time jobs and dc.

He’s been in hospital again this weekend. Another funny turn, I’ve been trying to convince him to move mum into care, but they’ve been married nearly 50 years and he doesn’t want to make that call (I get it I really do), but he’s going to put himself into an early grave if he carry’s on like this. How can he recover and heal if he’s looking-‘ after mum. It’s essentially like having a small baby again (just a lot bigger).

Spoke to him tonight and he said she’s going to a club of sorts this weekend so he can have a few hours restbite, but I could hear mum in the background saying she didn’t want to go and moaning, then he was trying to reassure me he was ok, a little later on I could hear her saying ‘you might be ok, but I’m not’ ‘what about me though’. She’s always been such a selfless person it’s heartbreaking to hear how self centred she is. It must really hurt dad even though we all know it’s the disease talking.

Whoknew . I don't know where to start! You and your brother clearly can't do anything, your Dad needs to look after himself else he's no use to your Mum, but whether he will see it this way is a different matter. He needs more than a few hours respite, he needs her in respite care while he recovers.

If he's determined that she shouldn't go into a home, then they need carers coming into the home. If she's getting up in the night, then he can't cope with that as well as daycare, she's not safe.

Have they had a SS assessment of needs? Both your Mum, and your Dad as her carer, are entitled to one. You or your brother probably needs to be there to counteract your Dad's assertions that he's coping OK.

That’s a really good call about contacting ss. My db has gone over this week as work is slow and I’m due to go over for half term week. My db is more straight talking and has said he’ll have a good conversation about full time care home. He can then go and visit her daily if that’s what he wants to do but it will mean he gets a good nights sleep and can take cate if himself.

I know this thread hasn't been active for a while, but if anyone is still around I wonder if you can help.

When writing cards to someone with dementia is it best to avoid titling them (great grandma etc) when you're not sure if they remember.

I want to make a card from my children to my grandmother and wondered if it's best to a) keep it blank just with 'love from dd1 and dd2'
Or
B) out to great grandma love from dd1 and dd2, perhaps with their photos to help her out
I'm fairly confident that she doesn't remember they exist when we're not with her, but always loves seeing them and I know she would be very pleased to receive something made by them.

I had a FaceTime with my own DM today, I explained what was happening with MIL and she immediately turned the conversation on herself, saying that could be her. Frustrating. I feel for both of you. It's scary time as an older person, with what seems like daily newspaper reports about dementia being the leading cause of death, and yet more things associated with dementia, including being overweight in middle age (too late to do anything now), deafness (wish I could do something about that) - add to that your own consciousness of all your lapses of memory or concentration - I'm not surprised she's scared stiff, and talking about your mother in law just brings her own fears to the surface.

loupyloo Your more observant than me - I didn't realise it was a zombie thread!

Third option "with love from your great grandchildren ..." - ie defining who they are rather than who she is.

I've no idea which is best. Photos sound a good idea.

Thank you Mere.

What I don't want is for her to read it one day and think 'great grandchildren?' And be really confused and then sad.