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

[CMOTDibbler]

There seems to be lots of us here struggling with someone close that has dementia - be it Alzheimers, Fronto temporal, vascular, Picks or any of the myriad others.

So come and chat with those who know how it feels to have to choose a meal from a menu for their own parent, what its like having small children and a demented parent at the same time, and how you explain to children just why grandma says such odd things

Its sort of like the latest installment of a soap opera. Though not one that would ever be commissioned for mainstream TV.

Poor you.

the ch has accepted fil so if all goes well at the finance meeting on Tuesday we can move him in by the weekend

Hooray Smiling, so pleased your FIL will be moving to somewhere much more suited to his needs!

Hi Isabeller . Please feel free to use this thread to rant, let off steam or whatever you need to do.

Smiling I am glad a CH is sorted, fingers crossed for the finance. I can only imagine what a huge relief it must be.

PostBellum, really sorry about the break in, what a nightmare. Really glad your Brother was there. Do you think it will make your Mum realise it is time to move ? I can imagine the idea of facilitating that must bring you out in a feeling of panic at the thought with everything that entails. Is there someone in the village your Brother could find to start clearing some of the stuff in anticipation of a move ?

It seems the problem with siblings is common and spans the generations. My neighbour in her 70's was telling me she had big problems with hers and Mum's neighbour is estranged from hers after their parents care needs.

The case conference on Monday is cancelled as an Independent Mental Capacity Advocate (something like that, IMCA)not appropriate apparently as Mum has family so needs a Citizen's Advocate which take longer to appoint. Brother has been told it might be another 3-4 weeks. He's told DH he doesn't want to go but will go if I go. I'm awaiting my instructions from the SW who was off on Friday , her assistant rang with message.

I've been working on my CV as contacted my old Boss from way back in 2000 to see if he would give me a reference (spent year's after DS self employed) . He will but wants my CV to jog his memory ie. he's forgotten me! That's fine though I last one was 1997 so have really had to work on it. Not finished but it is getting there and I'm applying for a job. Won't get it but good practice , something to do with Dementia as it happens !

Also been to Mum's to sort out anything hazardous if she should come home. Old food, mouldy papers, out of date medicines, cosmetics. Fair play to my Brother, the spare room looks brilliant. I've tidied the living room and it looks lovely. Bitter sweet as she may never return.

That silver lining that is sleep is a wonderful thing however.

After the debacle 2 weeks ago when DAd got lost and picked up By the transport police and taken into hospital, I had quite a good visit to him last Thursday. We just did nice things which he enjoys doing- going to library, to a cafe, hanging out at his house. I also had quite a productive hour at his rental flat meeting the builder who's going to do much needed renovation work. not to mention the statutory 5 binbags of rubbish removed from his room. So I was feeling pretty good until today. Got home, there were 5 messages on the answer phone, Dad sounding very afflicted. Before I had time to pick up the phone it rang. Dad is very worried because of " this man who is living upstairs". Tragically, that is my brother and DAd has forgotten he is his son. He was asking to come to mine tomorrow. I'll be at work. And I had visions of him getting lost again, so I asked him not to. I didn t even feel too guilty about being inhospitable, whereas a few months ago I would have done. I'll go to his next week, with the kids. I hate this f*ing disease, the paranoia, the loss of perspective and autonomy and not least the way it just erodes my peace of mind and constantly yanks me back onto planet dementia.

Thats really tough Bob. How is your brother doing?

Mum spent the day asking where their dogs were. The dogs died 6 years ago

You never know on jobs Wynken, and you would be fabulous at it. Enjoy the sleep.

God Bob, so sorry to read about your Dad worrying about the man living upstairs - that is his own son. It is just heartbreaking. Same with your Mum and the dogs CMOT.

Wynken, good luck with the CV writing.

Latest update from me is that Dad will be allowed home once we can source a hospital bed and turn one of the downstairs rooms in the crumbling pile into a bedroom. Naturally, he is "too independent" to qualify for the loan of a hospital bed. We queried exactly what independent meant & apparently the fact that he can stand very briefly (and we are talking less than 1 minute) unsupported means he is "independent" in hospital terms!!!!!!!!!

So, I am phoning Red Cross and Mobility Hire companies this morning trying to find someone to hire us a hospital bed.

Nursing care continues to be dreadful. They seem to have no problem leaving him lying in his own poo. He managed to pull out his catheter on Thursday night and lay in wee & blood stained sheets until lunchtime on Friday. My Mum was sitting on the bed propping him up so she could feed him lunch & the hopeless sister told her she was a hygiene risk and must move off the bed. My mum told her that when they cleaned him and his sheets and put him in a proper sitting position then she would move, but until then she didn't think that the hygiene risk she presented could be any greater than the soiled bed he had been lying in for the last 6 hours.

On Saturday morning my brother arrived and popped his head around the door to find a nursing assistant on her iphone while Dad's legs were dangling off the edge of the bed, with his hips and spine all twisted awkwardly. He rushed over to grab Dad's legs and did say he probably shouted at the nursing assistant to go and get someone else to help.

Yesterday I queried whether or not a 2nd stool sample had been sent to the path labs for testing (as per the consultants instructions) and the nurse asked "why would they want to do that?" - um, to check for an infection as he has diarrhoea and his infection markers have gone up again. She said its probably back flow around constipation & nothing to worry about. I explained that no, he did not have constipation, he had never suffered from constipation but he had in the last 4 days developed diarrhoea and the consultant had asked for the test. Nurse huffs and says "well, I don't know why they ask for these tests". I asked if she had actually read my father's notes - "oh no, I don't read notes".

PBB they sound really unprofessional. A nurse should not be casting doubt on your Dad's care plan and second guessing what the doctors are doing, then being negative about it. It just undermines patient confidence and is unproductive. I work on a very well managed ward and that kind of thing would not happen. Your Dad should not be lying in his own waste and certainly it makes a charade of asking your mother not to sit on his bed "for hygiene reasons". Realistically there are going to be some minutes between someone opening thewir bowels and being cleaned up, but hours is outrageous. Again I'd advise keeping notes about these incidents with dates, times etc. Good luck.

Well, I guess that its great you'll be getting your dad home PBB, but awful on his treatment.

My dad is seeing a urologist privately on Wednesday - and for some reason wanted me to come with him. I gently suggested that he get a taxi as I can't drive for 6 hours in total for a routine appointment. I feel bad, but I have to manage life, and I have no more annual leave this year to book.

Oh no PostBellum, that is really awful, do depressing this can go on. Fingers crossed you find a bed very soon.

Bob really sorry to hear about your Dad and Brother. I totally get what you mean about the erosion of peace of mind.

CMOT you really can't drive for 6 hours when you have a job to juggle. I know it's no good saying don't feel guilty as that seems to part of the Dementia package.

Took the children into see Mum today. It didn't go well, they don't want to go again. She doesn't want me to visit her in there again, said not to come until she's home after the meeting which she thinks has been cancelled twice (once). I said it might not be for a few weeks and she was well so be it .

She doesn't understand consultant says she lacks capacity and GP told her to come in when she was ill or about the POA. My 9 year old got it (the first time he said) but she doesn't . I had to listen to how wonderful my Brother and the cleaner are and was told I had some answering to do or something like that.

She totally blames me for her being there and clearly still thinks I am plotting against her. Suspect if she has to stay she will probably refuse to ever speak to me again until she forgets who I am. Oh well, my conscience is clear, I know I have acted in her best interests and been here. I can't do more than that. I have spent hours and hours wading through old papers, medicines, dirty washing, dust the last couple of weeks and was here every step of the way with her argument with Aunt, house buying and everything else.

Dementia bloody sucks though.

Yes WBN remember you have faced up to your responsibilities and been there. As we know, not all children can say as much. But it doesn't t mean you have to put your life through the mincer. Most sensible people agree residential care is the best option for those with dementia past a certain point. I hope you can continue to be strong, I know there is enormous guilt with organising a relative s move to residential care ( I've been there with my grandfather) but remember her present living conditions are not sustainable and if it s not done now, a move later down the line will be just as traumatic if not more. And you don t have any duty to take more of her abuse.

Thanks Bob. It's now totally out of my hands and in that of the panel of the case conference which is SW and medics. The CH have witnessed what I use to witness, all the memory lapses, not understanding etc so I imagine that will be presented as well. Must admit I was gutted case conference cancelled today but that's life.

The thing with Dementia is that unless you've been through it before you have to learn as you are going along. I find it quite comforting in a way that it isn't my decision and it will be people who deal wilth it day in and day out, who know what they are doing, who will make a Best Interests decisiom. She's been having a go at me for ages now and I've taken it mostly. Now she's told me not to come I'll do as she says and get on with mourning the person who was my Mum as the person who inhabits her body no longer feels like her.

Wynken, the visit with your DC sounds fairly awful. Completely understand the mourning for the person your Mum was. Hopefully, next time you see her, she will have forgotten that she doesn't want you to come.

CMOT, very understandable that you can't do such a long round trip just to go to the urologist with your Dad. I know you probably do, but you shouldn't feel bad about not going with him.

I managed to hire a hospital bed for my Dad & it should be delivered tomorrow with Dad coming back on Thursday. Thankfully my brother has this week off, so he should be around to accept delivery. Mum is not good and needs kid glove handling. I keep reminding myself that this is her DH of nearly 50 years, the love of her life & I must not shake her until her teeth fall out!!!!!

I hope we're doing the right thing for Dad. We've all asked him if he'd like to come home and he seems vaguely positive. I don't think he wants to sleep downstairs, but there is no way he could go up and down a full flight of stairs at the moment. We've arranged 24 hour care for the first week back, just to see how it goes & ensure Mum doesn't get worn out & overwhelmed. She hopes she can scale back a bit after that, as it costs a fortune to have that much help.

PostBellum well done on sorting the bed. I guess it must be very hard for your Muma and you are doing brilliantly. How lovely your parents have been together for so long and he's the love of her life. The 24 hour care to start with sounds like a good idea, takes the immediate pressure of adjusting to his needs at home taken off.

Lots of tears here yesterday afternoon from DD. it was the bit when Mum said had I poisoned the packet of cakes we took in for her in addition to a cake for us all . Plus that she said when she first arrived there they were drugging her drinks though they seem to have stopped now. I pity any live in Carers she has if the case conference sends her home, I couldn't spend 22 hours a day with her.

On the plus side if they do send her home the house is pretty much safe and clean. For the first time in years there's no dirty washing and her bedroom is clean, no out of date food, medicine, cosmetics etc. I just want the case conference to happen so we know what's happening.

Oh Wynken, so sorry to hear about the poisoned biscuits comment and how much it upset your DD.

It must be really hard for your DCs Wynken. Well done on the house cleaning!

Great news on the bed PBM. I'm sure your dad will be more positive once home.

My dad will be having his surgery on Monday! He's sorted the taxi to take him (he was much better about the taxi once he'd beaten them down in price), twice daily carers for mum all week, and I've just ordered him new pjs, dressing gown and undies.
I feel very annoyed that he's been forced to go private, but its worked out well as a) he went to the bank to put the money from savings into his current account, and they went through the records to track down all their accounts/ISAs etc and sorted them back onto paper statements and b) he could do with a couple of days of decent nursing care and nice food. Plus its also made them start using carers.

Thank you, I'm feeling quite philosophical about it all.

That's good news CMOT. I'd also feel very annoyed about the private bit but I guess you have to do what you're doing and look at the positives. Will have my fingers crossed for you all on Monday.

I'm sorry your Dad is having to go private too CMOT, but having seen the care my Dad's received in a general ward, I can only feel relieved on your Dad's behalf.

The bed has arrived and has been constructed. Brother has tested it and says it works fine. Phew! Mum said Dad was more positive about coming home when she saw him yesterday. Maybe he just needed a more precise date before he could focus on it. Fingers crossed, he will be home tomorrow. We have requested an ambulance and wheelchair this time, so that he can't fall over the threshold and end up back in hospital like he did last time.

I think the dementia thing is tough on our DCs. I was older when my grandmothers deteriorated (never knew my grandfathers). I was in my late teens and it was easier to hide behind O & A levels, plus I was old enough not to need supervision. My two can be left for short periods but not indefinitely, so they have to come with me (given that their father is next to useless). They hate the endless weekends at their grandparents in the crumbling pile. They thought their grandparents were fairly bonkers before any of the dementia stuff .............

I can really identify with the fallout on the kids. I sometimes gain comfort from the fact that neither of my parents went through this horrid angst visited on the children of the demented. Mum pre deceased her parents ( not ideal) and Dad was a continent away from his ailing parents ( surprise surprise, his sister did all the hard work). Tomorrow I am going to Dad s and taking the kids so DH can have a break ( as a teacher he does most of the holiday child care). Today I got a letter from dad's church, the jist of which was " we're really concerned about your father, we'd like to help but there's a limit to what we can do, and what are you doing?". DH pinned it on the notice board and I took it down, I don t really want the kids reading it. More stuff for me to deal with. Realistically, Dad is never going to accept residential care, he is able bodied, so what do I do? One grim possibility is wait till he's so bad he can be committed to residential care on be basis of lost capacity. It s pretty awful to have to contemplate this.

Oh Bob, I am sorry. Can you refresh my memory, is your Dad having Carers ? He goes out and about quite a bit doesn't he and who is prescribing the Aricept? Apologies for all the questions.

I wonder whether Extra Care housing might be a possibility at this point like Needsmoresleep's Mum. The problem is what would be available to him locally. If you own your own home you can fall in the gap of provision with this as they can be expensive and there's no hope of getting into the council run ones as a home owner I was told.

You need to get some help from the health professionals involved now. The letter though hard to read will be back up for you to take with you. The Memory clinic were very helpful to me with the whole accommodation thing and they arranged for her to see the Consultant at her last appointment for a capacity assessment.

How do you think your Dad's capacity is? I think a lot of people would be surprised talking to Mum on the first occasion to know she has lost capacity. The CH say the mistake people make is thinking poor old thing, she's lost capacity, must be totally out of it. But it's not like that, it can be quite subtle, a breakdown in reasoning. And it's only one area ie. making choices re accommodation.

So sorry you are going through this.

Dad doesn't t really have carers, we got people from a carers' agency going in to do housework withe plan of increasing their input when needed. The problemis most of the time dad isn t in, and mybrother will not open the door. I m thinking of making an appointment with the geriatrician, and going to he appointment on my own, if possible,to discuss options. I have no idea whether dad would be deemed to have capacity but I know for sure he will scream ,kick and shout before he agrees to move out of his home. He is still relatively fit physically.

Yes I think geriatrician on your own with letter is first step. Did they say they are generally worried about him or give specific instances? I'd get a copy of that off to his GP with a letter to say you are very concerned, know he will not move from his own home voluntarily and are making an appointment with his geriatrician to discuss.

Just so you know I was told if deemed not to have capacity then it is ok to use stealth to get somewhere and that a home can then apply for a Deprivation of Liberty order. I have bern readung thatbthey are not always granted though. That's the Mental Capacity Act. If action is taken under the Mental Health Act it's off to an assessment unit for decision to be made so preferred method is Mental Capacity Act. Mum's has gone to case conference due to family disagreement about method of care but that's unusual . My friend who works in community health has said there case conferences when no hospital involvement aren't that common.

It's a very difficult thing to have to deal with. Before going to the geriatrician try to be clear in your mind how much of a risk to himself and others you think he actually is (if at all) . Really sorry, I. Know how that looks seeing it written down and that is probably further down the line.

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.

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.

Very true Needmoresleep - a couple of years ago a couple of mums friends contacted me worried that mum had said dad wouldn't let her have a scooter/2nd hand rail.
Dad had already had the hand rail done, and it was her refusing to have a scooter! So initially I was offended, after all, I was doing my best to try and keep things going, but then I realised that they were trying to help, and it was mum telling them the wrong things. And I explained, and they've become great allies.

And I think Bob, that its the combination of your dad and your brother that is a huge issue here - possibly neither of them is doing the other much good now, and could be making their separate problems worse.

My oldies are ok today (well, mum is as mad as a box of frogs), and dad is v happy that he'll be getting his op. The nice support worker from the Alzheimers society has been v supportive to dad about the food issues, and I think he's calming down. And as her Gp has agreed that her diabetes is the least of her problems and stopped her insulin (which she'd stopped accepting), then if all she'll eat is ice cream, then thats what he'll give her.