This is hell...!

[Kate P]

I know you're all in hell too so I'm sorry to whinge but I've got to off load or start smashing up everything around me (note: I'm in work and that wouldn't go down well!)

I'm starting another new thread because this is about my mum and I don't want to confuse it with the one about my aunt (does anyone have a virtual cigarette to hand??!!)

I think we've reached a point were we're at a real loss to know what to do with or about mum. My sister is talking about nursing homes - I don't know that we're at that point but then what is that point? I can see what she's saying as I would rather mum went into a nursing home than my dad die of a heart attack brought on from the stress of caring for mum. However, I don't think any would take her given how aggressive she is.

It is all becoming sssooooo stressful - she's just aggressive and unpleasant every day and can be hysterical for many hours at a time - she cries and wails at the top of her voice - she hits out and slams and throws things.

I've just spent 30 minutes on the phone to my dad even though I'm in work (won't go down well) just to try and keep him somewhat "grounded" and calm as she's rampaging around the house and trying to constantly escape.

She's now having increased anti depressants and anti psychotics but they don't seem to be making any difference at all - not even a little bit. The only time it works is if dad gives her another dose of anti psychotic and then she eventually falls asleep.

We still have no contact from SS although a CPN came out to see us just before Christmas - she stayed about ten minutes, did a memory test on mum (which I personally find pointless as memory is just not the issue with mum) and said she's see us again next year. What the hell use is that to anyone?

We've told the consultant that the drugs aren't helping and she said we have to stick with it to let them build up in her system - well it's been at least eight weeks so to my mind that should be time enough.

I just don't know what to do, what to suggest to dad - I can't even help out as much as I used to and take her off his hands on the days I don't work because she's too unpredictable to have around my daughter and neice. I'm seeing him and talking to him every day and spending as much time with them as I can so at least dad doesn't feel isolated but what are we going to do? This just can't carry on. I know it's not her fault but I'm starting to hate her for making my dad so unhappy - talk about mixed priorities eh?

 

[Margarita]

she's just aggressive and unpleasant every day and can be hysterical for many hours at a time - she cries and wails at the top of her voice - she hits out and slams and throws things.

My mother use to do that '' cries and wails at the top of her voice ''

I wish I new something to say to make it all better , but don't know anything that would . just that I know how you feel

sending you a hug xxx

 

[blue sea]

Hi Kate
Sorry to hear how difficult things are for you and your family. I would suggest you don't give up on the CPN and consultant. In the end they are the key to your mum getting the help and care package she needs. Unfortunately while people continue to appear to be coping, they are left to get on with it. If you as a family insist the problem is urgent and keep phoning, they have to respond. It could be that a full review of your mum's medication is needed, perhaps in an assessment unit, which woulld give your dad some respite. Most homes will not accept people who behave aggressively, but that does not mean your dad should have to cope with your mum like this. You are obviously doing all you can to support your dad and you all sound at breaking point. If your mum is registered with SS then an emergency call to them might get things moving, and/ or repeated urgent calls to your GP and CPN. Remember that your dad is also entitled to an asessment of his needs as a carer.
Blue sea

 

[Skye]

Dear Kate,

So sorry that things have got so bad with your mum.

I agree with blue sea, keep ringing both SS and CPN, ans stress that this is an emergency and your dad just can't cope.

I agree that your mum needs to be in an assessment unit for a while to get her meds sorted out. If the antipsychotics aren't working, she needs to be supervised while they find something that will.

Don't try to struggle on any longer, you need help, and you are entitled to it.

Love,

 

[Grannie G]

Dear Kate,

Out of love and loyalty to your mother, you and your father are struggling to keep her at home no matter what. But things do seem to be getting out of hand and perhaps the time has come for your father to accept this situation cannot continue.

There`s no shame and no guilt in coming to realize that this is not going to go away, it is not going to get better. It may or may not respond to professional help, but whatever it is, it is no fault of your mother`s she is seriously ill, but neither is it any fault of you or your father that you are unable to help her.

I have had my challenges with Dhiren but nothing comparable to this. Please get some help for all of you.

Love xx

 

[ElaineMaul]

Hi Kate,
I would gladly offer you a virtual cigarette ..... guess it wouldn't have any health effects
I can only begin to imagine how you're coping. Grannie G's advice is sound.
Do you think you aught to contact the emergency social services? I notice you live in merseyside ..... if you go to :
http://www.locallife.co.uk/liverpool/socialservices3.asp
and search for 'emergency' on the page, you will find a phone number. Might that help? Or perhaps a call to your doctor?

Thinking of you. Perhaps a virtual hug {{{{{Kate}}}}} is better for you than the ciggie??
Elaine

 

[Kate P]

You're quite right Elaine, the hug is so much better for me!

Thank you all so much for your support. I must admit I thought you were all going to tell me to pul myself together and stop being so hateful so it was a nice surprise to receive the advice you gave.

I think the feelings of inadeqaucy and guilt mean you can't be objective about your situation - at least I can't!

I'll get on to SS and the consultant again and keep going until they do something. I'll speak to dad about the assessment unit - we have tentatively spoke to him about nursing home care - not that he should do it right now but just think about it for the future but I think it's all too fast for him to process just now.

How did I think I was going to manage without you all...?

With much gratitude

 

[noelphobic]

I'll get on to SS and the consultant again and keep going until they do something. I'll speak to dad about the assessment unit - we have tentatively spoke to him about nursing home care - not that he should do it right now but just think about it for the future but I think it's all too fast for him to process just now.

With much gratitude

Nursing home care is usually only needed if there are serious physical problems as well as the dementia eg immobility. My mum was in an EMI care home and only moved into a nursing home when she became immobilised after a broken hip. It may also be that a good EMI home can cope better with 'challenging behaviour' than a general nursing home would.

 

[Jazz44]

Hi Kate

Where shall I start. It is my Dad who has dementia and underlying Alzeimers. My Mum looked after him until this summer, a year after his official diagnosis, but she ended up having a nervous breakdown. She is a 71 year old with her own physical ailments.

We started putting Dad into respite care but eventually Mum just came out and said I cannot do this anymore. She had an Occupational Therapist who Mum was referred to by her Social Worker and my Dad's Consultant, as Mum really wasn't coping very well. I found myself on the phone several times to Social Services claiming that we couldn't cope and laying it on thick, something I didn't find easy to do or admit. They acted fairly quickly, certainly with the support for my Mum initially, e.g. a cleaner, somebody to come in and help clean my Dad every morning, a regular visit from the Social Worker, day-care for my Dad to give Mum respite and they also attended a workshop kind of thing 1 day a week for 6 weeks where they met other sufferers and their carers. I don't think my Mum ever really coped with it all, but eventually she just couldn't take anymore.

Dad is now in full-time care. He was assessed originally as needed EMI nursing (elderly mentally ill) but we felt he wasn't at that stage at the time, so we put him in a nursing home, however recently he has become a lot more aggressive and the home decided they couldn't with him and transferred him to an EMI nursing home. They have him on an assessment unit awaiting appraisal of his behaviour etc.

I will let you know how it goes.

I realise this is a long answer to your question, but you are at a similar stage to me, only your Dad still has your Mum at home. My Father-In-Law looked after my Mother-In-Law who had a major stroke at 57 and my FIL was 54, for 10 years. He ended up having a stroke and he was still quite young. If you can organise it, I would strongly suggest you get a Social Worker on the case immediately, have your Mum assessed and preferably in an assessment unit before your Dad's health takes its toll. It is just a matter of time. This is such a cruel illness, one I am really struggling to watch as my Dad declines rapidly. I just hope he doesn't get to the stage where he cannot chew and swallow. It is so so cruel Kate. I wish you loads of luck with getting things sorted for your parents. It is so hard, but once your Mum is being looked after your Dad can go and visit her as her husband rather than being her carer.

Good luck Kate and please let me know how you get on. I have just found this forum and hope to find support and advice at this extremely painful time.

Best wishes

Janx

 

[Grannie G]

Welcome to TP Jan.

Your first two posts have been so supportive to others, and I hope you find the friendship and support for yourself that so many of us have cause to be grateful for.

Love xx

 

[Mameeskye]

Hi Kate

Sorry to hear that you are having such an awful time. It is not as if you haven't got enough to cope with.

I hope that you have been able to contact SS / CPN /Consultant. If you seem to cope I think that you get lost in their system as their resources are so stretched that they only deal with urgent cases therefore you have to make yourself urgent! If they do not know there is a problem building up they cannot help.

As to homes Mum has had both Nursing Care on release from hospital and EMI care as her dementia progressed within the same home albeit on different floors. The EMI unit is good as it tries to manage behaviour and ensure that stimulation continues.

I hope that you have managed to get something sorted out.

Love

Mameeskye

 

[Kate P]

Hi everyone and thank you so much for the support. I haven't been able to get hold of the consultant yet and our CPN didn't leave any contact details so I can't get in touch with her - although she did send us some leaflets about AZ and VD - not a lot of use as mum has FTD! Nice to know they're on the ball.

Things have just gone from bad to worse since I last spoke to you all.

We've had an incident that went on for five days that we now refer to as "bra" gate! I won't go into all the details but mum has been so awful. I lost my temper and pushed her because she threw said bra in it's box at my daughter and I'm afraid I just saw red. Dad made her apologise when they came to my house for tea later and she did manage to behave for a few hours but it then it all started again.

I've mentioned the assessment ward idea to dad and he's so desperate now that he wants me to find out more about it. Can we request this? How long is she likely to be in? Would this mean she would be sectioned?

It's all just so difficult as I'm sure you all know. We know it's the illness and not her fault but you can only put up with so much hideous behaviour before you start to crack - I don't know how my dad's doing as well as he is - I've never admired him more.

I sometimes feel that maybe we're just not doing well enough - I know most of you have only admitted your loved ones to EMI or nursing care as thingshave deterioated physically and we're no where near that point - physically she's fine - it's just feels impossible to keep putting up with these terrible angry moods day in and day out. If there was just an occasional moment were the woman we once knew came through I think we could live with it more but there aren't any - none at all.

 

[Grannie G]

Dear Kate

You and your father need to contact your mother`s consultant and explain the situation, don`t hold anything back, ask for an appointment as soon as possible.

You are not at fault in any way, the behaviour your mother is demonstating shows she is completely out of control. I`m afraid I`m unable to give you any pointers on sectioning, it`s out of my experience, but the consultant will be able to answer your questions.

There may be some help for your mother, but you must ask for it.

I hope you get it.

Love xx

 

[Skye]

Dear Kate

You need to talk to your consultany about the assessment ward, hopefully he's be around again today or tomorrow. This long Christmas holiday plays havoc with us all, doesn't it? Someone should tell tham that dementia doesn't have holidays.

Your mum would only have to be sectioned if she refused to go voluntarily. It sounds as if your mum might refuse, but a section is not necessarily a bad thing.

If you're seriously thinking of long-term care, I'd start looking round now. Your mum doesn't have to have physical problems, but if she's aggressive, she'd probably need an EMI unit. Talk to the SW about this.

Don't be afraid to admit defeat. You've had a hard struggle from the beginning, and there's only so much you can do.

Love and best wishes,

 

[Christinec]

Dear Kate,
Reading your post and felt sad on your behalf. Just wanted to say that you should not feel that care homes are only required for physical problems. In my opinion behaviour problems and especially agression are as valid a reason to consider a care solution as physical incapacity.

Also pleased that Skye touched on the fact that sectioning is sometimes the only solution and this was the case for my situation. It sounds awful and many people seem to be against it on principle but in my situation it was the only way forward and the results although not perfect (what will be with Alzheimers)have been worth it.

As I am sure others will and have said you may need to be very forceful about the problems with your Mum be clear about how difficult it is for the family to deal with this. I have had to say often - "No I cannot do that"- in this area it can feel like a real fight to get services at times.Sometimes you really have to say no we cannot cope and you are responsible for dealing with this. Having said that I have great respect for the work of my Mum's CPN, home care staff and the staff at the residential home.

My Mum is in care now and although it has its own problems I feel she is safer there and no more unhappy than she was at home.

I have reread your posts again before sending this and agree with people who suggest phoning emergency social work and anyone else GP, CPN,NHS24 etc. it sounds like you really need the support of the services that should be there for this situation.

Wishing you all the best.

 

[Kate P]

Thank you so much for all your wonderful support and advice - it makes it all so much more bearable. I wonder whether all the wonderful people in the world are here on TP... certainly feels like it!

Progress so far is that after several hours of faffing about I have got the name and number of mum's social worker - they shall rue the day...!

He is going to ring me back, as is mum's consultant. Why am I not reassured...? I think we must have the misfortune of dealing with the worst LA in the country!

 

[Grannie G]

Kate , if they haven`t rung you back by 2pm ring again.

 

[jenniferpa]

Coming in late to this Kate, but I wanted to agree with those who have said that challenging behaviour is as valid a reason for residential placement as physical infirmity. Apart from anything else, physical infirmity can be managed with extra sets of hands and gadget such as hoists while these behavioural extremes are hard to manage at all.

I would agree with Sylvia - if they haven't called you back by 2pm call again, and then again every half-hour - they need to realize just how desperate you are and this is no time to worry about being overly pushy.

 

[Kate P]

Okay the update is this...

The consultant and social worker got on to the CPN who rang...

my mother!!!

Argh!!! What's wrong with these people??!!

Luckily, my sister happened to be at mum's house (dad was at the doctors) so she took the call and told her to ring me.

Anyway, the upshot of it seems to be this - they don't believe me. I explained everything that had gone on over Christmas - the wailing for hours on end, her throwing something at my daughter, her hitting dad in front of all the family, her turning up at my house in her nightie (she'd walked), not to mention the fact that her medication isn't making a dent.

Her reply was that when she saw mum she seemed slightly vague and forgetful but that was all.

I explained that mum puts on the performance of a life time when there are any professionals around (or the vicar!). She said she'd try and go round on Friday and would try to spend almost an hour there to see if she changed - I told her this was unlikely as it generally takes several hours for the pretence to crack.

I can't believe this at all - why would I make it up? Then again, given that they sent me information packs about AZ and VD when she has FTD I suppose I shouldn't be surprised. Surely a professional would know better than this.

I'm so mad!!

 

[Grannie G]

Kate,

I think they are being deliberately blinkered. The implication is that you are exaggerating, which is quite offensive. I don`t know what else to suggest you do. I know what I`d like to do, but it might get you in trouble, and I wouldn`t want that.

On second thoughts, I`d like to see the CPN by myself, and challenge her opinion. They all know better than this. I`m not surprised you are mad.

Try to persevere.

Love xx