Support for those with a parent suffering from dementia. Pull up a chair and talk to those who understand

Thanks. I'm going to go to social services tomorrow to find out more. I'm sure he must be able to get someone coming in every day to check on him at the very least.

Your poor Dad CMOT. I really hope your Mum accepting Carers is a big turning point for them both.

Hi Dementedma. I don't know how things work in Scotland I'm afraid. Down here they do try and keep people at home for as long as possible as it is the cheaper option. If he has under 23k in savings he would probably be given some financial help with the costs of a care package for care at home, even if he owns his home. If he had to go into a home at some point then the house would be counted and he would have to pay.

There's something called Extra care housing down here but not many of them if you'r not entitled to the council run ones. They have a 24 hour manager, restaurant, help with cleaning and a care package can be arranged. I called www.eac.org.uk who can advise what options are available locally .

There's also something called Telecare which can help with detecting falls and things I believe but we didn't get that far. If your Dad is being seen by a Memory clinic or something similar they are a good place to start.

So glad I found this thread.
Dad will be 80 next week, has dementia and is terrified of being "put into a home". It is getting to the stage where he can't cope alone but if I contact social services can he be forced into care? He has some savings and owns his own house. Is sheltered housing a better option. I just don't know where to begin. He can manage his own personal care etc but is increasingly confused about where he is, who he is etc. He is adamant he won't go into full time care so what are my options?
Have three teen Dcs in a two bed flat so no room here.I am in scotland

I'm getting into the abbreviations now. I have a nasty feeling the LPA we got sorted was only the financial one, not a health and welfare one. I take it they are 2 separate things? I'll have to check with my DSis who organised it. At least we haven't fallen out over DM's care, but things are a bit tense between my DB and DSis, well, my SIL and DSis really.

Wynken, I'm so sorry things have got so bad between your DB and you. From reading back it sounds like you have the moral high ground, even if it's painful. I'm glad your relationship with your DF has strengthen, though. I hope some counselling will be useful, it sounds very hard.

Hi, CMOT. Your DB doesn't sound much cop, either. Glad your DF's OP was a success. I take it he's your mum's main carer but falling apart a bit himself?

Knickers it is for now then . Have you got both LPA's ? We messed up not getting the health and welfare one sorted in time.

The counsellor is for me. I have a feeling if the Best Interests decision is she stays where she is then she will refuse to see me again. I've come to terms with this to a fair extent but figured some extra support in case I need it wouldn't be a bad idea to have on tap.

My Brother apparently told DH he would apologise if it is decided she stays but I'm pretty sure that's because he is confident she will be sent home. If she has to stay I imagine he'll be shocked, it will be my fault and no apology.he told DH in an email he feels the rift between us is too deep to ever heal and I think he's absolutely right. The whole thing seemed very sad a few weeks ago but I accept it for what it is and actually feel ok about it. It's amazing what you can deal with when you have to.

As a result of this I have become a lot closer to my Dad and his partner and friends have really rallied round so not all bad. I've been busy and have done my CV and my old boss has agreed to do a reference. I've managed to get in the grand total of 2 applications the last week. Very early days yet but I feel very positive about the whole process and have a much clearer idea what I want to do, which was an issue earlier on the thread and I felt I had left it too late.

Thank you for the welcome, Wynken. I'm usually EllenJane something, but knickers is fab!

I might call in on the neighbours next time I'm down. A card from them sounds a great idea. It could be referred to as often as needed, I guess. She's only seeing the GP so far re her dementia. They have prescribed the precautionary anti Bs. She's borderline diabetic as well and on a cocktail of medication which they put in blister packs for her now, which helps. My sister is her main carer, though. I'm really glad we got lasting power of attorney sorted a few years ago.

I see you have been looking into a specialist dementia counsellor, not sure my mum would countenance talking to anyone outside the family. Hope it works out for you. Actually is the counsellor for you or your mum?

The moving away neighbours are lovely, but very young and mum is very private and has never really talked to them. There are other neighbours who keep an eye out. She's lived there for 50 years and some neighbours have too, so there are some long standing relationships. My sister is in the next street, now as well. Neighbours on the other side are decidedly odd and fairly unpleasant, unfortunately, but the paranoia isn't about them, for some reason.

Welcome EllenJane - I have the urge to call you knickers so apologise in advance if I do ! Sorry you're in the parent with Dementia club. The guilt is very familiar to all of us but with the best will in the world there is a limit to what you can do and you have nough on your plate right now.

My Mum has been paranoid about the neighbours in the past and we have been through a fairly recent phase of hallucinating people knocking on the door at night. I chickened out of saying she was imagining it but the Memory Nurse came round and did gently suggest it. To my surprise she accepted it and said she'd also hallucinated David Cameron in her bedroom.

Who is she seeing for her Dementia, wonder if you could have a talk with them for suggestions on how best to approach this? There are medicines that can be prescribed for paranoia but our local service don't like to do this unless the paranoia is really upsetting someone. Do you think maybe you could talk to the neighbours and explain what's happening and maybe ask if they would consider sending her a card saying they will really miss her but need to move for whatever reason and will find someone nice to buy the house so she has lovely new neighbours ?

That is a big ask of them but I have found Mum's neighbours to be lovely and really keep an eye out for her. Mum has Vascular Dementia as well and I have found there are dips which have probably coincided with a small TIA. After a bit she seems to recover a bit. Fingers crossed this is a UTI or something and she improves soon.

Sorry you had your first sundowning experience Needsmoresleep. I think my Mum flipping out over the lost coffee and climbing stepladders was sundowning.

Still no news as to when the Case Conference will be, September at a guess when everyone has had annual leave.

Hello, can I join? It feels like a guilty secret, almost. No-one really wants to hear about my mum except my brother and sister. I have 3 DC, one with SN and am recently divorced, so a single parent. It's really hard to stop feeling guilty about not doing my share with my mum.

She's got vascular dementia, is widowed, my dad died 9 years ago, and lives at home with care workers coming in twice a day. It's enough at the moment with my DSis having moved around the corner from her, but I live 50 miles away, can't justify moving closer as my DS2 is really settled at school. My DB has just taken early retirement, has been caring for his FIL for the past 15 years, FIL has died and he and my SIL want to do a bit of travelling. I can't blame him, but my DSis feels bitter. I do her shopping for her with Tescos online and visit her once a fortnight, but it never seems like enough.

Mum has recently started being paranoid about her neighbours. They are actually lovely, but have put the house up for sale and it's unsettled my mum. She keeps imagining they are whispering about her, that they've been in her garden, in her attic and are spreading rumours about her. It's all in her head but we don't know how to calm her without upsetting her. I try to say that she hasn't heard them properly (which considering she's very deaf isn't a surprise) but I have chickened out of saying its in her imagination. She knows her memory is shot and she finds it upsetting, but she's always been a passive, gentle soul and her paranoia and upset over her neighbours is very out of character.

She's on a course of precautionary antibiotics in case it's down to a urine infection, as that has affected her in the past. Worried that it's a permanent decline though and also worried that she may have to go into a more secure residential home. She's very shy, private and unsociable outside the family and would much prefer to stay at home.

I'll go back and read the last few pages of the thread, now. Didn't realise how much it was worrying me.

Post Bellum, I hope you are enjoying your holiday and that this gives you a chance to gain perspective and see solutions. Pretty impossible when you are drowning in day to day crises.

Smiling. I hope you dad is settling and that your mum gets some well earned respite.

CMOT too. I hope the way forward becomes clearer, as your dad gets a bit of care and rest.

And Bob. It sounds as if things are becoming unsustainable. I hope a sensible way forward becomes apparent.

Lastly I hope the WBNs case conference works out in the way she wants.

Did I leave anyone out. I hope not.

As for me. My mum aced her recent mini mental test. Extraordinary given she was completely surprised when I turned up to take her there, despite several reminders. Then last night she had her first "sundowning" episode where she phoned up, something she normally never does as she has a bit of a thing about others having to phone her, sounding lucid but completely unaware of where she was. Quite a surreal conversation. I sense these could become a pattern.

So glad your Dad is Ok CMOT and that is excellent that your Mum liked the Carer.

I rang to see how Mum is doing today and apparently she is absolutely fine.

OH CMOT I am sorry that must have been a difficult moment.

PostBellum you are right to go and do understand what you mean about if you didn't .

I can't say what a relief it is knowing Mum is safe these days though I really wish it wasn't in these circumstances.

x-posted & missed Smiling's update - fantastic, so glad your got your FIL in somewhere. That is great news.

Bob that sounds awful though I'm sorry. It's hard enough doing this with older children, never mind ones at the age where they piss on each other in the bath! You sound as if you need a break for a couple of days to get your head round it all. One thing though, is there any chance he could have a UTI, other infection of some kind or be dehydrated ? And do you think he might not be taking his Aricept ?

Smiling, really glad he's finally in there !!! I was told to not take anything else in for Mum in case she asked for it . Guess it's a bit different as we don't know where she will end up. I think a fair percentage of people in homes always think they are staying as a temporary measure. That would really piss me off with your SIL. The whole not getting it thing clearly isn't confined to the males of our species then!

Morning all - sorry to hear about your exhausting day whatabout. It does sound as though your Dad needs to be assessed or re-assessed.

Wynken - will be keeping fingers crossed that your Mum is less negative towards you. The only thing I know, is that dementia seems to continually change the minds of those who have it, so hopefully your Mum will come around. Not sure if that is comforting or not.

CMOT - glad to hear that your Dad is pleased to be having his op. Will keep fingers crossed for him.

All seems to be going well so far with Dad. He was exhausted after his discharge from hospital yesterday & slept very heavily last night. I suspect the problems will start up when he is less exhausted and starts all the night time waking again. I'm hoping that Mum will keep the night time carers going.

Anyhow, after much fretting, I am going on holiday. I booked it way back before all of this happened in January and I have worried myself into a small hole about whether or not I should go. I have no life outside of work, caring for children & caring for my parents & I think if I don't go, I may die a bit inside (sounds silly, but I know you will all understand what I mean) - so I'm going. My DCs also really need some of my undivided attention and fun time with me.

well fil is in the care home

it all happened really fast, ch manager agreed he could move in on Friday, finance meeting Tuesday and we moved him in Wednesday.

we took the kids and mil to the beach yesterday as it had been decided to leave him 24 hours to settle before visiting, spoke to the home this morning and he has settled really well so far, he spent yesterday in the garden and watched some tv in the evening. mil is visiting this afternoon and tomorrow dp and I will move the last of his things in. we've ordered him a double bed so he will be more comfortable.

relief that he is somewhere safe where he can stay indefinitely is overwhelming, dp and I feel a bit lost now that we don't have to organise fil as even when he was in hospital we had to take food in (he refused hospital meals) and visit daily.

the next issue we have to face is that he thinks he's only there temporarily despite being told repeatedly that it's permanent so when we take his things in he will kick off, he told us when we said we had ordered him a bed not to bother because what would we do with it when he goes home, he tried to send all his shoes home because he only needs one pair and his slippers for now.

sil is really pissing me off, she hasn't visited fil for 2 weeks because she ran out of petrol money (fair enough) but has now text asking if dsc would like to go to harry potter world at the weekend - her treat so we can have a break, no mention of fil.

We don't need a break from dsc we haven't seen them since June and want to spend time with them what we want is for her to visit her dad, if she can't afford petrol how an earth can she afford harry potter world for 3 adults and 5 children

Just wanted to say hi and thanks to all for your kind and wise words. Still recovering from visit to dad today with 2 boys, culminating 20 mins ago when one pissed on the other in the bath and all hell broke loose. Plus someone else from church collaring me at train station with that meaningful look. And trying to keep dad happy all day, the slightest thing sets off his irritation/ aggression. Seems like every time i go to dad s people are jumping out of the bushes to ask me what i ll be doing for him. OK, OK I know that s paranoid. Dad has definitely taken a turn for the worse cognitively in the last 4-8 weeks, it s what I've been dreading for the last 3 years, the time I have to think about him moving out of his house.
I'm so raddled I can' t post much, but thanks again to all.

It is good to hear people looking out for vulnerable people. Mum had 3 neighbours and the postman keeping an eye on her though she had no idea.

Agree with ringing the church to get specifics which could be helpful knowing further down the line. I also totally get how overwhelming it must feel to get a letter like that and know you need to deal with it in the middle of everything else going on.

Glad all ok today your end CMOT and I hoping Mr PostBellum senior is home and settling in.

Rang the Alzheimer's Society today to ask if they can recommend a counsellor who specialises in Carers of Dememtia suffers. She didn't know anyone but is asking her colleagues tomorrow. It hit me that if Best Interests Decision says she stays where she is then she is likely to refuse to see me again (apologies if I already said that). My Brother has said he will apologise if she has to stay in the flat as I know he thinks she'll be sent home but I suspect he'll flip out again and I think I want some support on hand to deal with the fall out.

My Brother has suggested I apologise to Mum to build bridges ready for when she comes home and that her attitude to me is all about it being my fault she can't come home till the meeting. That's because he hadn't seen the increasing paranoia that had been building up about me before all this and how nasty she can be, even on that day I picked her up early from respite. The only good thing about this is my Dad and his partner have been hugely supportive and we're all much closer now that I've realised the majority of what Mum told me about Dad over the years is rubbish.

DH's Dad (87, Parkinson's and diabetes) flies back for his annual fortnight. There was a letter about him recently from concerned friends so I'm keeping my fingers crossed he will be ok and able to return at end if his stay. There will inevitably be a crisis with him soon though.

Reading that back I think the solution may be to take up drinking on a more regular basis !!

Bob,

I would take the letter as a positive. There are other people who care about him. In the three or so years when I knew there was a problem and was unable to do anything about it, I am sure that there were others who were concerned. What I am equally sure is that my mother did not let on that I was there and trying to help. It was if she could elicit more sympathy and support if she presented herself as alone and vulnerable.

When she had her fall a number of people appears quite surprised, and relieved, that I was around. This included bank staff, her church, her solicitor, building management, neighbours etc. I assume she was worried that if she told them about me and and vice versa we might all gang up on her.

I really understand this desperate fight to retain independence, but equally there comes a point when the dementia becomes so advanced that this fight is irrational and unsafe. What you know, and what the Church is telling you, is that point has probably been reached.

I would approach them and thank them for their concern which you share. Listen to what they have to say and note evidence of specific examples of unsafe behaviour. Also take advice. Vicars and priests do a lot of visiting the elderly and will have good ideas of suitable and local alternative accommodation. And/or how the system works in your dads area.

When I was clearing my mother's flat and preparing it for rental, I was able to tap into huge local goodwill, including reliable tradesmen. People were pleased to see that my mother was being taken care of and in return went out of their way to help me. Plus advice on all manner of things.

Then perhaps phone the GP, or ask for them to phone back on the basis that it is not just you who are worried but the church, neighbours etc. The agenda will be "is it time for the next step" and "how to get there given your dads reluctance to consider alternatives". You will need to throw in the need to find something for your brother.

For everything you have said it sounds if it needs to be done. And whatever the guilt think of the relief when you can answer the phone without wondering what the latest installment is. Plus your dad is probably very stressed, lonely and confused. Getting lost must have been terrifying. He could well be much happier in a suitable setting which allows for his disability but allow him company and scope the use his remaining faculties.

whatabout I know the letter from your Dad's church must rankle a bit, but it is actually nice that there is a bit of community spirit still alive and kicking.

Is there a contact on that letter you could ring? It may be that they might have some pointers or solutions local to your Dad that would be helpful?

In an ideal world what would you like for your Dad whatabout? Have social services been involved at all so far?

Sorry lots of questions.

Dad hopefully coming home this morning. Fingers crossed very tightly that it goes ok. Mum is like a cat on a hot tin roof.