Case Conference Today

[Margaret W]

Oh dear, I didn't know it was going to be a Case Conference, thought it was just a routine chat with the consultant, but no, a full-blown job. Mum was not allowed in, which she was not happy about, but accepted cos she is an very accepting lady - normally.

Anyway, hubby and I were told that mum was not likely ever to go home again, she was a danger to herself, had continued to display the same problems in the hospital as those that had caused her to be admitted, ie. confusing day and night and hence going out at night.

So we are now to find a care home for her. End of meeting. But I said, mum is anxious to see you, (to the psychiatrist). Oh I have no need to see her. Yes, but mum wants to see you. Mum was outside the door, desperate to get in. In she came. Oh I am glad I have seen you at last, I have been in here a month and not seen you (not true) and I want to know when I can go home. Hmm, says the psychatrist, that is not likely for a while yet. Why not? I am no different from when I came in, so why can't I go home. Well, that is the point, you came in because you were very confused and you are no different, so you need to stay with us. No, I don't. I wasn't confused and I'm not confused, you are making it up. People at home have been lying about me going out at night, I don't go out at night, I have nowhere to go at night, why would I go out? and I have been fine while I have been in here. Hmm, says the consultant, but we have records that you have been getting up and dressed at 3 a.m. So what, says mum, I can get up whenever I want, it doesn't bother you. No, but if you were at home you would be going out then. No I wouldn't, I don't do that.

Then, okay if you are worried about me, my daughter can come and lock me in at night and let me out the next day. Well, I suppose I could. Or someone else could - has anyone tried that arrangement? I am not doing it myself!

The Psychiatrist resisted and it almost became a battle. I don't know who has been telling you I have being going out at night, but they are lying. I don't go out at night. I want to go home. I need to go home, there are things I need to see to, like cleaning, and I need to get my pension. There is four weeks pension I need to get. If you won't let me home I wish to discharge myself NOW.

n summary, she was not impressed with the fot going home.

Help! what do I do now?

 

[Margarita]

Gosh I do feel for you .

You know she in the best place staying in care home , but of course your mother not going to see it in the realistic way , that she in a place of safety .

I don't know if you can legal force her to stay in a care home , hope someone has better advice then me as they may have been in your situation .

 

[Grannie G]

Margaret, it is heartbreaking. Can you imagine being in the same position and fighting to convince people you are capable of looking after yourself.

All I can suggest is you keep trying to impress on your mother that she is at risk.

My husband has what I call Lapses. When he has these Lapses, he is very confused, has no reasoning, and speaks and acts irrationally. When he comes out of them he has no recollection of what he has said and done.

Could you suggest to your mother that this is what happens when she goes out in the middle of the night, that although she doesn`t know it she is at risk.

I don`t suppose she can be forced to go into a home unless she`s sectioned, and it doesn`t sound as if she`s ready for that.

So it seems it`s either persuasion or taking the risk of her living at home.

 

[Taffy]

Hello
What a situation,your mum is surely unsafe leaving the home alone in the early hours of the morning, this is a real concern.But you have to hand it to her, she is on the ball with somethings...locking her in at night...having to collect a months pension...discharging herself. I fully understand your concerns, the risk factor is great and you have the backing of the medical people involved, but, it's hard having to decide on anothers welfare. I can only hope that things get easier for you. Take Care. Taffy.

 

[gill@anchorage5]

Case Conference

Hi Margaret

Was thinking of you yesterday for your meeting - our "D Day" meeting for Dad is next week and I think we are probably going through very similar emotions!

Would have been good if they had advised you in advance of the reason for the meeting. Obviously you were concerned (by your earlier post) by being "summoned to attend" and you probably prepared for all eventualities - but if you had known in advance the purpose of the meeting you would have had the chance to prepare more thoroughly, from a specific angle. Communication from the medical professionals would help so much wouldn't it?

I'm presuming from your posts that your Mum currently lives alone (but I may be wrong). How do you feel about the recommendations of the consultant? Sadly it no longer appears to be your Mum's decision - so you are put in the dreadful situation of having to decidewhat it best for her - an AWFUL situation to be in as I well know. Have you been given a time scale to make this big decision regarding your Mum's future care?

Like a previous poster on this thread - I often imagine what it must be like to be in your Mum's (& my Dad's) situation - and it's not a nice thought - not being able to make your own imprtant decisions. We just want to do what's best for all.....it's just so hard isn't it?

My thoughts are with you -take care

Gill x

 

[Margaret W]

Case Conference - it's all too fast for me.

Oh, folks, I am so upset, I have never been so upset. It all seems wrong. I haven't had time to get used to this as some people have. Three months ago mum was okay and now we are looking at care homes! It's too fast.

I have never had a good relationship with my mother, always thought I didn't like her very much, but suddenly she is my flesh and blood and I'll damn well look after her. She has displayed some reactions that have shocked and suprised me, but is it odd to say they have pleased me too? She is not the little wimp I thought she was, she is a person, and a pretty strong person from what I have seen recently. I am impressed, and have suddenly become admiring of her, and determined that nobody is going to do my mother down!

Well the "experts" have told me she needs a care home. I am not to tell her, just arrange it, but I am not happy with that. Does anyone have experience of this deception? I'm not happy with it.

I think it has come on too fast for both me and mum. I think I'd like to explore care at home first. Maybe night-time care for a while. I'll pay for it for a couple of weeks, I can afford it (but I've been advised I should never admit I can afford it!), but I just feel that I can't give in without a fair try. I was thinking of early retirement but if I scotch that idea, I have got the extra income by not retiring early, so I just feel I have to try it.

It all seems so "neat". Oh, your mother needs residential care, go look for it, goodbye. No alternative, no nothing. Sorry, it doesn't sit well with me.

Any advice gratefully received.

Margaret

 

[Grannie G]

Hi Margaret.

How would your mother react to the siggestion of a night sitter? Someone who could ensure her safety at night, which seems to be the time she is most inappropriately active.

Just a thought.

Perhaps she`d agree as an alternative to the suggestion of a permanent residential home.

 

[gill@anchorage5]

Keeping all options open

Hello again Margaret

In my limited experience - I would suggest that you do anything you can to "buy time" & to keep all options open for your Mum.

With my Dad - I feel that if we try caring for him at home - we are keeping all options open. However if we decide now "that the time has come for a nursing home" - Dad will have no further options available to him I'm realistic enough to know that "things are not going to get better" - but if we have to "alter course in the future" at least we will know that we have tried & I certainly aim to do my best to ensure that he is able to enjoy the best quality of life that he can have in his "sunset years".

Ahead of "D Day" meeting next week - we had meeting with SW yesterday - who was very supportive & confirmed that (depending on finances of course!) - all levels of support & care are available for care in the home if that is the option we choose, from what we had before (assistance with washing, dressing in the morning & getting ready for bed at night) to a total package of 24/7 care if required. BUT he stressed that there are lots of possibilities "in between" these two extremes of "care package" & I hope this is the angle we are going to explore.

Mum is frightened (understandably) and we both feel that the "medical professionals" are guiding us in the direction of NH option for Dad. But while the "good days" outweigh the "bad days" - I still believe that at this time with the necessary support in place - Dad can enjoy a better quality of life at home.

Thinking of you....

Gill x

 

[Margaret W]

Mum

Thanks all.

I am going to explore the option of care at home, but it will have to be 24/7 which is going to cost about £1,000 a week. But I will try it for a fortnight. I simply have to give it a whirl, I can't commit mum to a home so soon, without a try at alternatives. Obviously I can't carry on with care at home at that price, but if at the end she settles into some sort of routine, I can think about what to do next.#

I just don't feel I can "give in" without a battle.

Love to you all, and good luck in your own difficulties.

Margaret

 

[Taffy]

Well the "experts" have told me she needs a care home. I am not to tell her, just arrange it, but I am not happy with that. Does anyone have experience of this deception? I'm not happy with it.

I think it has come on too fast for both me and mum. I think I'd like to explore care at home first. Maybe night-time care for a while.

Hi Margaret
Just wondering if anyone had discussed the possibities that your mum may have "SUNDOWNING" I have no experience with this and only know of it from the support group.What we were told about it, is, that the dementia may damage the body's internal clock disrupting sleep & wake patterns.May be worth asking about.
When mum was diagnosed 7 years back the geriatrician told me the kindest thing would be to place mum so she could adapt to her surrounds while she still had the ability. This doctor sent a dementia nurse to the house with the necessary paper work and I declined. Last May the time did come for mum to be placed and she new nothing about it, I didn't tell her a thing. If mum had of known there would of been no way she would of gone. Deception? that's become part of the norm, noone is comfortable with mishandling the truth, but, the reality is far more painful for mum. I do think that we are talking different stages though. Your doing the best you can for your mum and I hope that all works out to your likeing. Good Luck. Taffy.

 

[Margarita]

I just don't feel I can "give in" without a battle

I do understand when you say that , but I am wondering if your mother thing they noting wrong with her now , would she except someone living with her at night ?

have you talk about that with your mother in how she feel in someone keeping an eye on her with at night time at home with her .

I know even having the money to pay for a carer 24/7 , my mother would never of excepted the help 24/7 or even just at night time even if it meant she could live alone , she could never see the reality of it , she never admit they was something wrong with her .


My mother was in the stage that your mother in as in wondering out at night time , my mother would be asking for breakfast at 3-am , taking a walk in the middle of the night looking for me when I went out late to a club .

we found her in her night dress wondering the street , on the way back from a night club I went to , I never really understood AZ back in those days and I would not admit to myself that it was that bad or could get that bad till I saw it for myself, then I did believe it

( I had given up my job full time Just done part time till I relies I had to give it all up all together or mum in care home I new she needed my help to live at home or getting someone in )

So I gave up on the battle of getting someone in

I new she would except me looking after her ( even then she would say they nothing wrong with her ) Or other wise I would of been in your shoes making that hard decision in putting her into a care home , against her will for her own safety .

I do hope your mother agrees with someone siting for her at night time xx

PS my advice now thinking back on those days and taking up front , is don't battle till the end grab the change now , but then its not me living in your shoes so easy for me to say .

 

[Margaret W]

Bless you all

Thanks to everyone for your input. I have simply GOT to try care at home for a short while, I will not forgive myself if I don't do it. My mum loves her home and seems prepared (via the suggestion that I should lock her in at night and unlock her in the morning), to give that a try. I must do it. Does anyone have any advice about locking in and unlocking? Would the care assistants do that? I think I would need to have a keybox outside, and the morning careworker to unlock the door, let her go out if she wants, and the evening careworker to lock her in. Seems okay to me, at least to give it a try.

None of this has been mentioned to me by the medical team, I need to get a list of questions for the Social Worker on Monday, so if you can advise over the weekend, please do.

You are a great bunch, please help.

Love

Margaret

 

[Brucie]

Hi Margaret

I know the idea is tempting, but I think you would be very ill-advised to lock her in on her own at any time, given her condition.

I'd be thinking that it might even be illegal. Someone else with more knowledge may know.

There is no way I would ever consider doing that to anyone with dementia, unless there was someone in the place and on call.

I do not believe that any care assistant would be permitted to lock her in under any circumstances.

These are just my feelings. They are based in part on my understanding of my wife's confusion and fear when she was at this stage - feelings that would be intensified hugely if she tried to get out and found the doors locked when all alone. Jan would have broken every window in the place in her desperation to get out and I could even conceive of her anguish.

If the situations are totally different, then what I have said will not apply of course.

 

[janetruth]

Hello Margaret

I can only tell you about my situation.
Mum is now 82 and has been living with us for nearly a year, this time last year we had given up.
I believe that the combination of the right medication, company, a good diet, and love, has given her a reason to carry on.
Last week we took her to the Wedding of one of her grandsons, an hours drive away. We all had a fantastic day, Mum can't remember alot of it now but she enjoyed it at the time and isn't that what life is all about.
So what if it's soon forgotten.
Everyone is different.
The sufferer.
The carer.
Most of all, we have to consider that peoples circumstances are different and no two cases are the same.
I wish you well
Take Care

Janetruth x

 

[Grannie G]

Dear Margaret,

I really would advise against locking your mother in at night. I`m also sure SS and carers would refuse to go along with it.

But I would consider some form of sedation to help her sleep better. I`m unsure whether I should suggest this, or whether or not it`s ethical, but it would reduce the risk of danger for someone who wanders at night time.

Perhaps you could discuss this with your mother`s medics, see what they think. It might be the lesser of two evils.

 

[paul86]

mum

Hello Margaret

This is my first ever post. I have read your story with interest. The advice you have had so far from the hospital is dissapointing, but they are trying to be cautious as hospital staff these days live in a risk averse environment. There are some recognised techniques that have worked for some people with dementia that leave the home at night. One of them is locking the doors however in some areas this may be considered risky or a form of restraint but can be agreed with your mums care team as part of an acceptable risk to take but should be planned carefully with your mums social care team and reviewed regularly too. I have also heard about something called assistive technology, gadgets for the home that are specificaly designed to gently deter someone from leaving the home in the night, ask the hospital or social worker about these things or even the alzheimers society could have some info about this. When your mum leaves the home at night is she going to look for someone or thing? I have experienced mums going to look for their children or partner. In these cases Doll Therapy has worked for people- dont be alarmed i am not suggesting for one minute people with dementia are children or behave like children. Having a therapeutic doll in the house to `look after` has been known to stop or reduce the incidence of people going out at night or in the day, However you must get expert advice before using such dolls as they can have negative affects too and should be looked into carefully.

Your mum, whilst she may not fully realise the risks is clearly telling people what she wants, your gut feeling is probably right to assist her in trying her at home again and you should be fully supported by her social care team even though they may have reservations. Doing this may help you with further decision making.You will do what you think is right, it may not be easy but `all the best`.

 

[Nell]

Dear Margaret,

I teach Occupational Health and Safety (among other things), and the problem I see with your Mum being locked in is - what if there is a fire? Whilst we might feel that this is an unlikely thing to happen (and hopefully we are right!), it must never the less be considered.

In my various jobs I have often encountered the conflict of interest between safety and security. Being secure often means not being safe - and vice versa. A person who is locked in without access to a key or a way out is in serious danger if there is a fire.

Furthermore, someone with dementia is (a) more likely than the average person to start a fire (due to lessening abilities to cope) and (b) less likely to know what to do (i.e. ring Emergency).

I truly believe you cannot do this. Even though the risk of your Mum wandering at night is far more likely than a fire, you need to still consider the possibility.

I'm really sorry to add to your difficulties - I wish to goodness there was a safe and secure compromise - maybe someone on TP can suggest one??

Thinking of you.

 

[Margaret W]

Well, follks, thanks to me an Brucie eventually working out how to instruct me in how threads and posts work, I am catching up on stuff.

Sorry for the delay.

No, I never ran with the idea of mum being locked in at night, there were all sort of health and safety issues., and Bruce mentioned the legality of it. The cost of night-time care sitters was prohibitive, the local authority could only offer it on a temporary basis, so we would then have been onto private provider costing a minimum of £20 per hour, so 8-8 would be £200 a day. Not on.

Anyway, won't go on about this on this thread, thanks for your input it is useful to remind myself what a state I was in!

Regards