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

Morning all. Had a chance to catch up on some of the posts. On going sympathy to all of you. Everything seems such a struggle for everyone & it seems like for every two steps forward, there is one step back. Anyway, here is to the small victories - . These are for the long, frustrating days & struggley bits -

I am so angry. Not entirely sure why, but I am.

Dad is very, very unwell. He has pneumonia in his right lung, either a kidney or a urine infection and septicaemia. He was also horribly dehydrated and has some degree of renal failure. He has been mostly delirious since Monday, but at last the nuclear strength ABs that he is getting via IV drip seem to be kicking in and he is starting to improve. The hospital he is in is like a freaking inferno - which can't be helping.

My Mum is a nightmare - veering from pathetic and tearful to spiteful and controlling. I am finding her very difficult. I can feel 35 years of dislike and resentment bubbling up to the surface. I feel bad about this, as it is obviously a very tough time for her - but by the end of yesterday, I was not wishing pleasant things for her.

The immediate future holds the on going decline of my Dad. It is very unlikely he'll still be here this time next year, possibly not Christmas. He is going to be in hospital for at least two weeks, probably longer. When the hospital are ready to discharge him, there is a strong possibility that he will not be well enough to go home, so it may well be that he will have to go into a nursing home. My mother is alone in this ridiculous, isolated house - so we will have to spend every moment we are not working & looking after children, helping her to stay there in the short term.

She has now agreed that when Dad dies, she would like to move into the local village - which I guess is small progress. Guess who will have to sort out the crumbling farm???????????????????????????????? With the broken cars, broken boat (not to mention the boat that is being kept at a boat yard somewhere), broken farm machinery, 2 barns of other dead relatives furniture, a huge full length loft that is so full of crap, it could fill another house. Why didn't they do like all their friends did and move to something more manageable? Why? Why? Why?

Sorry, I am seething & needed to get it out.

Best wishes to Post Bellum, Smiling, Bob, CMOT, Wychen/GUB and others.

The hot weather is not helping. I spent 7 hours yesterday in a hot car, first dropping my daughter off somewhere, making the trek to my mother's, then taking her to the memory clinic some distance away. Apart from a great lunch with a friend en route, the day was pretty much a disaster.

My mum performed amazingly well on the memory test, far better than the previous time. Astonishing given the very real impairment of her short term memory - indeed she had forgotten all about the test even though I reminded her yesterday, so was not in a great mood when I "surprised" her. This sparked off a new attempt to regain control. Like Wynhan, I appear to have been dismissed, though with LPAs in place it would be difficult to undo.

At the moment I really don't mind being told she never wants to see me again. However I am pretty sure if I were to phone her now she will have forgotten everything.

DM's prognosis is about 15 years. She confirmed clearly that she does not not want to return to near London, even at CH stage. The idea of 15 years of days like yesterday feels bleak.

PostBellum and Smiling I am so sorry

I really hate the Dementia today. My Mum apparently thinks I am evil, plotting against me and doesn't want me involved in her care.

I am overwhelmed by the kindness of people in RL and MNetters (you know who you are ).

fil is still in the mental health unit he is not allowed to leave the ward and just sits looking out the window at the garden, he just wants to sit out there in the sun and watch the birds like he does at home and it's upsetting him which is just heartbreaking to watch.

ss thought they had found a placement last week but when the manager went to speak to fil he told her he didn't want to go into a home and would drink bleach so she won't accept him. one of the reasons he is in the mental health unit is because he tried to manipulate mil by pretending to drink weed killer it's one of the reasons it's felt he is not safe to come home.

dp and myself went to look at a care home yesterday and dragged my mum along (she's the manager of several homes for people with learning difficulties) for her professional opinion, and we really liked it, chatted with the manager who has agreed to go and assess fil and says he is not worried about the threats to end it all by drinking bleach as they don't use bleach he was lovely and all the staff were really friendly, residents were happy and cheerful and the available room was gorgeous, really bright and spacious with an en-suite.

We feel really positive about it but it all comes down to how fil responds when he's assessed and since he is adamant he is going home he could kick off and get turned down again.

I lost my temper with the care manager because she insists on sitting to the left of fil despite being told repeatedly that he is deaf on that side, he gets frustrated with having to ask her to repeat herself and loses he's temper, it's like she's doing it on purpose how hard is it to remember to sit on his right BECAUSE HE IS DEAF ON THE LEFT grrrrrrrrrrrr

I know this is a horrible thing to say but I wish the bloody dementia would hurry up and take over this transitional stage is so hard, he still understands enough to be scared and frustrated with himself but doesn't remember why he gets so angry and lashes out, and most care homes aren't equipped to deal with him at this stage so he is stuck in a bloody mental unit which feels like a prison to him and all we can do is watch him get worse, we want him in a nice home where we can take him out and enjoy what time we have left.

Hello all - very brief post from me. Dad has been admitted to hospital today. Not 100% sure what the problem is, but seems to be some kind of infection that is not responding to anti-biotics. He is totally away with the fairies & unable to cooperate or move himself at all. Not sure whether it is another bleed or what it is. He has been on ABs for over 2 days now & is no better.

May implode from stress, as autistic spectrum DS is on a course that seems to be going horribly wrong with the other kids calling him weirdo, retard, mental etc etc etc. Useless ex-H is buggering off to the States for 3 weeks holiday, so is even more useless than usual.

Sorry, not to read all your posts. Thinking of everyone & wishing you & your parents well. The whole thing is a bloody nightmare.

More when I have some time.

GRUB sounds better.

It must have been really stressful for your mum to try and cling onto independence at home. Climbing ladders etc. My mum says memory loss is peculiar. You feel physically fine but are in a complete mental fog.

I hope your mum is feeling relief that meals are on hand. No need to watch out for people coming into her home. And great to have company as and when she wants. My mum has got to the stage of admitting that being at her old home on her own was pretty bleak and that she would not like to go back.

The really good thing for me is that my relationship with my mother is now better than it has ever been. (Admittedly from a low base - we were never close.) Having toughed out a pretty miserable few months of transition, my mum knows she is not alone and that I am watching out for her interests. I have ended up proud of the way she has coped with what is a significant disability with resilience and courage. Best of all since I don't need to be involved in the day to day care, I can now phone up and have a social conversation, without effectively nagging or us ending up in an argument.

(Part is a better understanding of the illness. So am better at presenting things that need to be non negotiable, in a way that avoids arguments. She too is much more accepting that things like money and appointments are organised by me and just happen.)

The advantage you have is that SS should want to avoid change if they can. Your mums best chance of maintaining her current competencies is if she can settle and re-establish routines. Moving her back and relying on live in carers will be a risk as it could fail. SS ought to be used to taking on board what people want, but then applying a filter of best interests. Her own flat within a CH may be the way of giving her as much as they can of what she wants.

Bob are there any "half-way house" options that might suit your dad. And any way to force the issue. I feel a bit evangelical, but the stress of sub-optimal housing/care clearly wore both me and my mother down, and caused pretty fatal damage to my relationship with my brother. It was four wasted years, when instead her disability might have been diagnosed and acknowledged and she could have had the support which would have enabled her to have a better quality of life. Something falling short of full 24 hour care should also be cheaper.

HMRC have set a deadline for my response on the tax investigation. They are being quite good though and have sent me a list of known income sources. Some are news to me. So another round of trotting round banks clutching my passport and POA papers. (It is really quite bizarre.) Whilst yesterday was an afternoon of call centre hell. It is so complicated I am having problems keeping track. My neighbour claims to have inherited "stuff" from about five different sources. I still have to sort out much of the "stuff" I brought home with me. I am becoming quite minimalist.

Thought for the day....

?If you want a golden rule that will fit everything, this is it: Have nothing in your houses that you do not know to be useful or believe to be beautiful.?
― William Morris

I slept pretty properly last night for the first time since about Wednesday, thank goodness for that ! Please do call me GUB, not sure I shall stay with it yet, am trying it on for size.

Think me finally sleeping was due to me feeling that it is being dealt with properly so whichever decision reached will be the correct one for now as decided by people trained to know these things. Dementia is so complex and different for everyone that it is so hard for families in the middle of dealing with it all and the heightened emotions involved, to be able to clearly see what to do.

One thing I do know is we're definitely not the first family to fall out over it sadly.

Well that s great- can I call you GUB? Try and stand back a little if you can. It s good that others are involved and it s not all down to you. I think sometimes in life, on some kind of spiritual level, you have to accept you can t carry everything and matters will work themselves out in due course. All will be well, all matters of things will be well.

SW rang me this morning. She is visiting Mum on her own tomorrow as she decided she would last week. She asked if I wanted to be there but I said it was better if I wasn't . When she decided to visit again last week, it was going to be at Mum's home. Obviously after her infection last week she's now in the CH flat so visit will be there .

She will need to consult with the staff at CH as well as Mum. She wants the Case Conference at the end of the month to stand and has appointed a Mental Health Advocate to properly represent Mum. I'm fairly sure Mum will be pleased with this and I absolutely welcome it as I know everything is being done 100% correctly and that whatever decision is made will be after Mum has been properly represented as to what her wishes are.

I've had dealings with all the professional who are going and found them without exception to be very good. I trust they will make the right decision for her and then I can put whatever they decide in place. I'm actually hoping i won't need to go into the meeting as i think i am redundant niw Advocatecon the scene.Am hanging onto what people say about this being one of the hardest phases .

Was dreading going to see Mum as I had visions of get me out of here but she didn't ask once. We walked in and she said why are here, it's too hot, you shouldn't have come. She ate her lunch and said it was quite good which is progress. Everyone is making sure she drinks and she asked DH to pour for her as she knows she must drink. She said she had a bedroom full of people and they were having a right laugh plus she's booked herself a table for dinner by the Air Con.

I've taken her TV remote apparently and when I went to deliver Meds she said to DH I'd gone off to tell lies about her. Had a chat with manager and deputy manager who are both lovely. Came away feeling very relieved that she was ok and DH commented that it's great to see her laugh again. She did seem pretty content.

New start, new(ish) name. CMOT that is the size of it though stopped short with DH and will leave him with two days.

Bob, totally get it about the kids. It is such a difficult thing to deal with. Needsmoresleep might be right about dehydration? It has been very hot and if he is forgetting extra fluids it won't help. It is so much to cope with and not like I'm sure any of us imagined life would be like.

I am retreating . Mum can go home with Carers, I think if there was ever a time she would accept them it is now. Guess if it all goes wrong I step back in but maybe a rest from it first. And maybe a change if direction on the work front for me. DH and I are trying to see this as an opportunity.

Thanks for your words of support all. At the moment I'm equally concerned about my kids. What was being a good day took a nose dive as soon as Dad walked through the door. Not his fault of course, but the kids' behaviour just spun out of control until. I ( shame) smacked both of them. I tried explaining the situation quite forcefully to my eldest but it made no difference. Later he came into my room and was crying quite hard, saying he doesn't want to die. Dad' s illness is confronting him with stuff he d rather not think about.
The worry of course with dementia is no matter what you do the disease progresses and keeps throwing more stuff at you until the person goes into residential care. I know I can t care for Dad till the end. Realistically, the journey to residential care is going to be a tough one. Dad is in total denial about his disability. Only today he was talking about going out to buy a car. I just ignore it. I sometimes feel I just don t have the strength for all this: job, kids, dad with alzheimers and brother with mental illness. I have an occasional fantasy, about moving to Edinburgh and not leaving a forwarding address.
Wynken, it sounds so hard. Easy for me to say, but it sounds like time to pull up the drawbridge, and concentrate on yourself and your kids and husband. Your brother is sabotaging your efforts.Can you just take time out? yes your mother might be in danger but between her and your brother they ve made your job impossible. Your mother won t like any change you implement whether at home carers or residential. But I think unfortunately at some point there is an element of coercion when an elderly person can no longer live independently. It was like that with my grandfather, I literally had to pick him up off the floor and put him in a car to a hospital, which spelled the beginning of his journey into residential care. I felt wretched and guilty, but in retrospect there was no alternative and I stopped beating myself up about it a long time ago. It'll come to that with dad too.

Bob,
That sounds pretty awful. Any chance of using this incident to get your dad (and brother) reassessed by social services. What do you want to happen? It sounds as if the current situation is no longer viable. And certainly not good for your brother.

As for WBN. Speechless. Good luck.

With the hot weather i wonder how much hydration is an issue? It cannot help lucidity. I am also wondering whether they have finally turned off the heating where my mother lives. The tropical house at Kew is cooler.

Oh Bob I am sorry you sound like you've had an awful weekend, you must be feeling very stressed. I fully get the worry of the effect on the DC's. Dementia crap is a good summary. Your Dad is on Aricept isn't he ? Who prescribes it, is it the Memory Clinic ? I think you need to ring someone, explaining what happened and getting some advice. I think it sounds like some measures might need putting in place now to keep your Dad safe. I know it's an incredibly difficult situation with your Brother too.

Today I got sacked and joined my Dad in the People Wynken's Brother Won't Speak to Club. He was about to sack DH too I think but realised he'd put a lot of stuff in email and has proposed a reduction in working hours with DH finding other work or a new job.

I've never been sacked before. Or written a CV since 1997, it's all different now I understand. Well I said I wanted a new career. Back to the drawing board.

Dad came to us this weekend. Unfortunately part of the tube was down for planned engineering work. He just made it here on Saturday but insisted on going home this morning against my advice, so I put him onthe tube and told him about the rail replacement service to get him back to his train station. At 4 after i got home from the park there was a message to ring the transport police. He d been found wandering, confused got and taken into hospital, could I come and get him. I told the TP it would have been better if they'd just taken him to the train station. I got a lecture from him about how come dad didn't have my mobile no on him, why did i let him go when he was confused etc etc. I had to riposte that he obviously didn t know much about the dilemmas of having a relative with dementia, that dad insisted on going this morning against my advice, that My husband is away and I have 2 young kids to look after. I then rang the hospital who fortunately did not see fit to lecture me. They sent dad back to my home in a taxi. They didn t feel he had a UTI and his blood sugar was reasonably good. He's here now and very confused, keeps asking questions about stuff even he should know. I m not even sure he realises he s in London. I ll have to take half a day off work tomorrow, accompany dad to the train station and make sure he s on the right train. This is pretty worrying. My brother s mental illness is pretty bad at the mo. when the TP rang and he answered the phone they were confused because DAd kept saying " that s not my son, I don't have a son". I can t imagine what it does to my brother but it can t be good. I know I go on about counselling, but it s one of the things that keeps me going. Dad has just asked me " the kids? What kids" that ll be my kids Dad. Who are acting up massively because they are picking up on my stress. The eldest (10 hrs old) has been attacking my plants in e garden. They are squabbling, whereas before dad arrived everything was OK with them. This is one aspect that is worrying me, the effect on the kids. Selfishly, they resent dad s claims on my time and I now think they wish he just wasn t here. I worry that the increasing stress I m obviously going to face as dad gets worse, is going to push my relationship with the kids to a difficult place. I'm so fed of this dementia crap.

Dont worry about your mother never speaking to you again. She may say awful things but this is the dementia. She does not, as the doctor confirmed, havethe capacity to decide where she should live. You know she will hate live in carers.

Dont piss off the flat. Leave her where she is till you have a proper discussion with SS. The worst outcome is for live in carers to fail, to lose the flat as an option and for your mum to be in a dementia home before she needs to. You would never forgive your brother.

To make it worse I've just called to see how she is doing today and things are going well. She's been up in the living room a lot, chatting to the lady next door , has 'come out of her shell', eaten, showered. They said she was a bit difficult the first day but yesterday was much better (that will be when she knew she was coming home.)

But totally reinforces my opinion that she would settle and maintain a reasonable level of independence. What a shame she's being moved

Yes probably he has said something to make her change his mind, he will stop at nothing to change his mind. I

I think if I don't get Mum she will never speak to me again. You and I both know she'll hate it but settle but he can't see that and I know him, won't let this lie until she has tried Live in Carers.

He is going to get a card of his own - when he comes back as says he can't get to the bank there - but refuses to say when he will come back as says he wants to come back when sorted, not into a 'shit storm' I think I'll say to set up account and I'll transfer the majority over. I still no longer want to be an Attorney though but can see that might be rash, will think on that.

I have no further wish to be involved in any future care or financial decision regarding my Mother. I have tried but the constant stress of dealing with her, the condition and my Brother's bullying/threatening tactics are not doing my Health any good, my blood pressure started rising again yesterday and last thing I need is a Hypertensive crisis. I'm done .

If you felt up to it then I agree about complaining. That is absolutely scandalous though nothing surprises me any more.

Are you sure your brother is telling the truth about what the SW said?

Your mum is bound not to 'like' the flat at first. But give it s couple of months and she would start to forget her home.

I would really not pick her up. And certainly not till I was sure of the SW view. It would be too sad if she loses her chance at semi-independent living. Simply because your brother has not been prepared to spend time starting to understand her needs.

There is no reason for him not to get a card of his own. If the bank is refusing because he is not UK resident then he needs to move back for the duration. Or he sets up an account in his name solely for the benefit of ypur mother. Transfers momey into it and then pays bills from it. You need not and should not be involved.

I was told that there was some local scandal about an elderly person being discharged from hospital at about the same time as my mum without a SS assessment or care plan and they died. A health professional I know says I should complain about my mothers treatment simply to help ensure it does not happen again.

Hmm, I know you are taking sense . Thing is he will bully me into paying the Agency bill with my card.

I think what shocked me the most is I stood outside talking to SW after she said case conference was next and said I'll get Brother to ring you. She said ok but decision isn't mine now we're having case conference but I'll tell him what I saw today. Then said she agreed with me, her judgement and insight is the issue.

Next minute I am being told by my Brother who hasn't seem her in all that time, blocked diagnosis for a long time which meant delay in Meds , that he has spoken to SW and she absolutely agreed with him, Live in Carers trial is absolutely the right thing to do. and he is still refusing to come back yet.

And this is one week after a Psychiatrist has said she lacks capacity to make decisions regarding her accommodation and said to her she'd need to leave and make it easy on her children.

Now she knows she doesn't need to stay in flat she's determined she hates it and I don't think it will be an option if live in care goes wrong, not least because the staff will be hacked off. So the only option I'd actually managed to find that would have given her independence is gone too.

I think friend shocked too but managing to stay very professional about it all. It does indeed seem SS down here at a total shambles then. They left a friend's brother for month's and months without a residential placement until he wandered off and the police had to search for him.

Dont make any hasty decisions and give yourself a bit of time. Its disappointing that the SW has decided to support his approach not yours.

I would not even bother to take your mum home. Your brother can organise a taxi.

If she is in somewhere supervised the burden does not fall on you. If she is at home the assumption seems to be that you can be relied on to pick up any pieces.

I would simply tell your brother that you appreciate his willingness to take over the responsibility. Given you both have different approaches and given you are tired, you welcome the break. Easier if he now takes over all the day to day stuff. Including organising the payment of bills.

I would not resign the POA. You will want it should your brother not step up to the mark.

I agree also about allowing your brother to sort out memory clinic attendance. I suspect they wont be thrilled to hear that SS have decided to follow your brother's 'informed' view.

So first thing. Do not pick your mum up. This is for your brother to do. He needs to arrange there is fresh food, that her fluid intake is supervised etc. Rule 1 is neither he nor SS should expect you to run around. They have decided that your mother is safest at home. You disagree, and feel this action will put your mum at risk. Hence you are not prepared to enable.

Also if there is a problem and your mum calls you perhaps you say that you will alert your brother.

What a mess. I am very shocked by the Social Services approach. They are meant to be safeguarding your mother. But then we are still waiting the discharge assessment for my mum from last December. It took a lot of chasing and two missed appointments before they turned up and now a couple of months later we have still to get the report. If she had not had family and cash my mother would have been sent home to an unheated flat in a confused state with a broken hip, no adaptations, no care plan and no means of shopping.
Given our mothers live in the same part of the country perhaps I should not be that surprised.

Still brace yourself. You are out of the loop. Take time off. Rest and recover. Dont enable.

Thank you CMOT I will sleep on it but at the moment I am definitely leaning towards resigning. He'll still be able to pay the Agency until he gets sorted as with help she'll be able to write a cheque.

I've looked back and the biggest stress over the whole sequence of events from realising there was a problem to where we are now is him. Each step of way he has fought me and I can not see this changing. He throws whatever he feels like in my face and never apologises, not even when shown to be wrong.

So in the interest of trying to maintain a relationship I think I now take myself out of the equation . I don't think I'll go to the Best Interests meetiing when it happens either. My Aunt and Mum don't talk after they fallout when their sister died and I don't want to repeat history . He might nit care if he is estranged from family (my Dad) but I do ad it would damage how i see myself. I shall decline to be Executor when the time comes, she has named me as sole. A solicitor can do it .

My friend is quite senior in community mental health has said she will happily help me appeal on the latest care decision and she doesn't think i can leave it as I'm so angry. But that if I'm going to step back i would really need to wash my hands and let them stew. she said don't make excuses about not doing something, just say no and let others draw their conclusions. It's lovely of her to offer her help but I am going to decline at this point and walk away from it. I will pick her up and take her home when she comes out but have already said Carers will need to take to Memory Clinic etc.

I'll see how I feel in the morning and over the weekend and if still feel the same tell him I am resigning (after I've sent card back etc.) He said today he would be the first point of contact and I would only be asked to do something if it needed someone who is actually here. Well good luck with that, he doesn't get to make the decisions then have me pick up the pieces. I think the SW will live to regret her decision by the time this has finished. Hopefully I get to just go and have a cuppa with Mum and none of the stress anymore (well I need to live in hope)

Here endeth the rant of Wynken.