Support for anyone with a parent with dementia - drop in for support, a rant, or a cry. All welcome.

[CMOTDibbler]

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

Thanks to everyone. Needmore, funnily enough I have both of those books, Contented Dementia I ordered with some scepticism and have dipped in and out of it, but as you say, just don't have the patience. Selfish Pig's Guide to Caring is more realistic. I will sort a carer's assessment, apparently Dad already gets attendance allowance, but I don't know if he really does, not sure i'll qualify for carer's allowance as think it means going through Dad's finances which he won't understand why I need to, as if he has savings of more than a certain amount I won't qualify, or maybe I have that wrong .... I have just come back to Dad's after looking after my grandsons for 3 days and in space of five mins he has asked 7 times whether I've had any sleep, I know the repetition is not his fault, none of this is his fucking fault, I am resentful and I need to do this with love, not resentment.

I think Citrus that carer's allowance is means tested but on your income not your Dad's and it's something like if you earn less than £100 a week and care for more than 35 hours a week.

Very hard to get past the resentment as the caring is all consuming. Entirely normal to feel like that I think.

I was at a party on Sat talking to someone whose Mother is going into a Home this week after 5 months of crisis. I have rarely seen someone look more relieved. We're taking Mum for afternoon tea to the new place and for an informal assessment. If she likes it she'll go on waiting list. They have what they call Studios so she could have a lot of her furniture with her. Brother was quite shaken up after seeing the bit for advanced Dementia.

Hi- if I may, attendance allowance is non means tested. Doesn't matter how much you (the person who needs it, not the carer) have in the bank. it gets more complicated with carer's allowance, I think that may be means tested, a good local citizens' advice bureau should be able to help.

Just to let you know that my very lovely, 'Scouse-and-proud', MIL died peacefully this afternoon, after a 5 year partnership with dementia. She really left a long time ago but her passing was still sad. This wicked illness will continue to rob us of our beloved ones but will never steal our memories. RIP Iris.

That should be 7 years not 5 years, sigh! It's been a long day.

What sad news. My condolences.

Really sorry to hear this. RIP Iris, my thoughts are with you all

Was forwarded this earlier. The only surprise was one of them which is part of a very expensive local care group. I've looked round three on the list.

What did you think of the 3 you looked at Wynken?

Mum has finally stopped 'reading' - for the last 2 years she has still enjoyed going through the motions, but had no understanding of what was there. Now she hasn't picked up a book or newspaper for 2 weeks. And this is a woman for whom reading was as essential as breathing - she'd have a book in her bag, one in the car, bedroom, bathroom, sitting room etc on the go at all times.

I am thinking about getting one of my childhood rag dolls out of the cupboard (my gm made them lovingly for me) next time I visit to see if she takes pleasure in it. Shes taken too some soft toys dad had got for ds, so maybe

My condolences MaybeIwill. RIP Iris

Sorry to hear that CMOT. I think it is a lovely idea to get some of your toys out and maybe some of your old books of you still have them? Did you have any of the Ladybird books like Ned the Lonely Donkey, Little Red Hen or any of the Little Grey Rabbit Series ? Wonder if they woukd strike a chord in her.

I went to see one if the 5 which is having enforcement action against them as the first I saw and it was vile. We then went to another on the list but to the new build Dememtia bit which was stacks better. It is on the same site but with different management. Asking around we heard dodgy things about the other bit on the site.

The third is a new build and we felt it was very clinical with no feeling of warmth. I have looked at one in the expensive group which was fine and I am surprised by that.

We're having problems with my FIL, might have to start a thread. Yesterday the neighbour found him in the sitting room, TV blaring and totally oblivious to the the fact the smoke alarm was sounding and there was an awful smell from the frying pan with oil that he had for some reason put in oven on 220 degrees.

My Brother having seen a few homes here and spending 3 hours with Mum has decided he's taking her to Thailand to live in the Summer as he thinks to care for severe dementia over here is awful.

I'd like it all to stop and let me off. DH had chest pains so I took over dealing with his siblings about his Dad but clearly pissed one off this morning when I suggested that FIL might possibly have a UTI. Ever feel you can't win?!

Hi. Not my mother, my grandmother (have POA) she is in a care home but lived with us until she moved in. She has Alzheimer's and PTSD. Quite late to this thread. She has recently started to get very angry and frustrated at us talking in English and won't talk in English (not her native language, so understandable) but I only understand a fairly limited amount of words, which means she gets cross at me quite a bit. Otherwise, we seem to have hit a fairly good patch- she hoarded a lot and would also sleep on her belongings to protect them, as well as attempting to steal once, but since we've given some boxes which slide under the bed easily, that's mainly stopped, although she's accused a couple of residents of stealing when they haven't.

Welcome TheSarcasticFringehead but sorry you have reason to be here. I wonder if the language thing will happen to my Mum. I can speak a bit of her native language but she doesn't understand me very well whereas my Aunt seems to.

We've had the stealing thing, it's all she goes on about. She has a lockable file box she stashes things in.

Hi Wynken sorry to hear about your pile up of problems. I also live in a world where i ask myself daily how long this is going to go on for. Phone call from the local police yesterday to say Dad had wandered into a home a few doors down from him and got quite shirty when told it wasn't his. It was a student flat, doesn't bear to imagine the scene. They called the police who then called me. Bro wasnt around and carers had clocked off.
he's also had his bike stolen and wants a new one, wants to come to london (NOOOOOO!!) etc etc. Personally (and again it sounds harsh) but I just tell myself "this too will pass". I am just waiting for the carers to say they can't cope, before I take action for him to go into a home.
Sarcastic fringehead sorry to hear about your troubles. Dad also gets paranoid and had quite a phase of ringing me up to announce stuff had been stolen- invariably I'd find it for him. For some reason he hasn't done that for a couple of years. His current fixation is with opening people's car doors and trying to get in (and trying to get into people's homes). i guess it's all part of the same continuum, a preoccupation with personal possessions but unclear boundaries between reality and belief.

Yes, when she lived with us, she could occasionally be found pottering around someone else's garden and house and then be very sure that they were her house/garden. Most people were quite nice about it, thankfully, some were quite cruel.

Oh dear Bob, that sounds stressful still. That's the benefit of Mum being where she is, she's not hugely mobile and has a long drive to negotiate. Guess if my Brother does actually get her to Thailand then I won't need to worry as it will be totally out of my hands. So glad I refused to be on the Heath and Welfare POA.

He has spent 3 hours with her since back and didn't want to go for a meal with her on his own so I'm not sure how he thinks he'll be ok doing what he proposes to do. Plus he referred to her being in the early stages when she is most definitely in the moderate stage. I have discussed it at length with my Dad and we agree I just need to sit back and let whatever happens happen and maybe it will be ok.

Meanwhile we are no closer to a solution with FIL. What do you do when someone lives abroad and refuses more help? His memory is now as Mum was Pre Galantamine last year so guess the Parkinson's is advancing. Discussion on POA has trailed off with no resolution. Goodness knows if someone has disconnected the cooker. I guess the hope is he comes back this summer for annual visit and the 4 of them sit him down in an intervention type scenaria. One Brother has his head in the clouds though. He clearly is going to need residential care pretty shortly as Parkinson's advancing and sight going. DH says he feels FIL has now lost capacity but there's no SW to ring in this scenario.

I am going through a feeling resentful period if honest and finding it hard to sit back and accept I can't change things. That waiting for the phone to ring feeling is back. Sorry, am moaning again. Off to get down and dirty with the compost heap as a spot of garden therapy.

Thank God for allotments! Don't know if I mentioned i am on a 5 week unpaid leave stint and so the allotment is looking pretty good, if i say so myself.
I know all about the resentfulness, I feel it myself and it's inevitable. The bottom line is it's very stressful and most people I know, of roughly my age, are not having to deal with this.
re your brother, maybe he is nursing rescue fantasies, but I suspect that a reality check ie spending time alone with your mum, will make him realise how unrealistic taking her to thailand is. I'm tempted to say let him go ahead and realise what a monumental mistake he has made, I'm sorry if that sounds very harsh. You have acted in her best interests and in good faith.

I'm glad you are getting a break Bob, you need it after everything recently. I've just given up my allotment which is a bit sad but felt it was one more thing. Plus it is a NT one and they decided to let visitors in which is a bit off putting when bright red, sweaty send your backside in the air ! However a tree has come out of our garden so there is more sun and I am making a new veg patch instead. My courgette has just germinated which has cheered me up

I think the FIL situation is stressing me out more than Mum as feel we are in crisis with that one right now - can see it escalating as it did with Mum last year. I feel for DH as the distance makes it paralysing. My Brother has seen a Dementia home in Thailand and some here which I haven't so I can't imagine what they are like there. I think he is very well intentioned and he's said this is his time to step up, I have kids etc.

But, he is still getting little snap shots of her. I am too and I have no idea how she is on a day to day basis as I see just a fraction. And I know she is good now due to the care she gets. I'm assuming a change of continent is going to send her reeling. Still, Oma Export as known in Germany does happen and if he can get her there and into a Swiss German Community, solves the problem of her reverting language wise. I'm not stopping him. I've said I find it hard to get my head round but if he thinks having seen it there it's the right thing then ok. He can argue it out as her Attorney with SS if they decide they have strong feelings on it.

Yes I ve read up on those homes in Thailand. Not an option for my dad but his brother lives in Thailand and is showing signs of memory loss. Has your brother visited any? Is there ome close to where he lives?
As for your FIL I would have thought the way forward is to be supportive to DH. But keep some distance because the potential for conflict with in laws is there. Scary because he is so vulnerable. But presumably he is there because he made the decision to move to Spain for quality of life., later in life. And obviously eventually there is a downside. Maybe as women part of our problem is we over empathise with others?

For courgettes is get lousy germination unless I put the seeds on wet blotting paper in a Tupperware. Then transplant into soil after little roots have formed!

Sorry I just re read your post and saw your brother has visited homes in Thailand.

I planted 3 seeds in the ground under half a plastic bottle and am delighted one is up as no need to faff around hardening off. I did another set with the other half a bottle but no sign yet. I want two plants and no more this year as ended up with 11 marrows last year.

Trying to detach myself from FIL situation, I know there is nothing that can be done and you are totally right for the room for conflict. Not sure being one of 4 is easier than one of 2 from what I have seen.

Brother went to one set up by a Swiss guy as his Mum had Dementia. He said it is a world apart from the Dementia Units he saw here. I think he wants to sort something out with the guy who runs it who is a friend of a friend, as she doesn't need that full on level of care as yet. Most people like here are still at home with a Care Package, it's her rejection of Carers that got her into this mess. He has some very valid points about it all to be fair. I've only seem one out of the 12 I've seen that I think does it well with people who have advanced Dementia.

Has anyone else seen the new Dementia topic?

The guy in Mum's flat broke into her flat last night and threatened her waving his walking stick around. No call from Home to advise what had hapoened. Brother called them this morning hoping she had hallucinated it but though they tried to side step it did happen and they were trying to brush it off.

My GM told a nurse DH hit her when we visited . He didn't- we were both in the room together the whole time. It's made me wonder that if she said anything about the care home, we couldn't know if it was true or not.

But she did Roll a Question on Mon which she seemed to like, and has told me she wants mint chocolates!