• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

This is hell...!

jenniferpa

Registered User
Jun 27, 2006
39,448
Kate is this the CPN or the consultant? And is this the same consultant who thought aphasia wasn't an indicator of FTD? Because if it's the CPN you should be able to find out who their boss is and make a complaint. The same goes for the consultant, although they tend to be a law unto themselves.

I don't know about insulting - I would say this intimation that your family are making this up is defamatory and as such actionable. My blood is boiling on your behalf. You deserve to have professionals around you who have some knowledge of FTD and that seems to be sadly lacking.
 

christine_batch

Registered User
Jul 31, 2007
3,388
Buckinghamshire
Dear Kate,
You must have the same S.W. as me!! The person with dementia are very clever in front of other people and I am speaking from my own personal experience.
It is so clear that you all need help. If you do not get a reply and the problem with your Mother continues, I would phone the Doctor.
Is it possible for you and your Dad to see S.W. or Doctor together ?
As your Father went to the Doctor's has your Father mentioned any of the problems to him/her?
I sincerely wish you all the best.
Christine
 

Kate P

Registered User
Jul 6, 2007
565
Merseyside
Well the update is this:

CPN going to see mum and dad on Friday - as far as I can see she's just going to do another memory test - this is of no earthly use but I've asked if she'll look at mum's meds while she's there so maybe some good will come from that.

She is then coming back again on Monday with a SW to do a carer's assessment for dad which is what we really need as there's no help available anywhere until we get that.

Explained all this to dad who suddenly went all weird and said "the problem is she needs something to do". I have no idea what to say about that. Someone from out church suggested to him that she goes to help out at the local nursing home to keep her ocuppied and this idea seems to have consumed him.

Given what's gone on over the last few weeks could you imagine...?

Sometimes it feels like banging your head against a brick wall - just as I get one lot of people on board the others jump ship.

What I will be doing is giving dad a copy of the FTD information I have and teling him to pass it to the CPN on Friday as they clearly have no clue what it is.

Nothing left to say just now but ... sigh...
 

germain

Registered User
Jul 7, 2007
342
Hello Kate P,

I am going to advise something very sneaky and underhand - please ignore if you think its too horrible !

A very very large and well known chain of stores that have big catalogues sell very small voice activated recorders really very cheaply.
They work in your pocket.

Just play it back to the CPN & SW if they don't believe you.

Regards
Germain
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Kate

Just caught up with your thread, and I'm horrified. I can't believe the CPN is so stupid. I think you must be right, your LA is the worst ever. How dare they think you'd make something like that up? If they've never experienced FTD before, they should be eager to learn.

I don't know if I've given you this link before, but it's something else to print out.

http://brain.northwestern.edu/mdad/frontal.html

It's from Northwestern University in the States, which is the leading research centre into diseases like FTD and PPA.

I know it's hard, but keep fighting. Someone has to start listening.

Love and hugs,
 

ElaineMaul

Registered User
Jan 29, 2005
333
60
Hi Kate,
Having been away for a few days, I'm horrified at your posts. This is way out of my experience but the advice from the others here is wonderful.
I just wanted to echo Nell's hug.
{{{{{Kate}}}}}
and send you lots of love.

Why oh why do these 'professionals' seem so STUPID at times?

Elaine
 

Scoop

Registered User
Nov 20, 2006
99
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.
How is it they do this! My Dad is the same, he can be hell for my Mum, then I walk in and he somehow makes more effort ( Occaisionally I get the full experience but usually he manages to hide it away). He gets very worked up too when the consultant comes but when she's there put's on a great performance almost making us look like we are lying or exaggerating!

Really hope you get this sorted ASAP, I think we are not too far behind you now but fortunately seem to have some very good mental health people working with us.

Scott
 

mrsspooky

Registered User
Jan 3, 2008
6
59
Brussels
Dear Kate,

I only understand what you are going through too well.

My mother just died (24th of Dec). She had Alzheimers as well. The beginning of 2007, we managed to place her in a retirements home, special ward for Alzheimers patients. Of course she refused, but we couldn't cope anymore. She needed full time looking after. And guess what ? She was actually happy that last year. She had people she could talk to and there was entertainment every day. And when we went for a visit she was always happily surprised that we had found her there (she thought she was in the pub).

I don't know how things work in the UK (I am Belgian) but if you can find a decent nursing home for your mum, do it ! When my mother was still at home, she was nasty as well. Once she had been in the retirements home for a while, she actually became pleasent. The people there have such experience, know how to handle them. But you must be sure you find a good place. I've heard other stories.

Yes, you will feel guilty in the beginning, 'locking her away', but you will actually be doing her a favour. That is my personel feeling. She will get proper care, by people who know what to do, and you can visit as often as you like and you will be able to enjoy your mother's company again.

How to get the care people (sorry I don't recognize all your local abbreviations)as far to understand how serious the problem is : I actually wrote down on paper all the little incidents that where an indication of her illness (like she went wandering around the neighbourhood not wearing a coat in the middle of winter etc)and we managed to organize a meeting with us (the children), her local docter and the care people. And then they finally agreed the situation was critical. It wasn't easy to do so, but if you keep bothering them, in the end they will agree on a meeting.

Good luck, and remember, you are not alone
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Mrsspooky

First of all, welcome to TP, and thank you for your post to Kate. It's kind of you to be thinking of helping others.

I'm sorry about the loss of your mother, but it was so good that her last year was happy. I hope you have found peace in knowing that you did your best for her.

Please psot as often as you want to, we're a friendly bunch.

All the best,
 

Kate P

Registered User
Jul 6, 2007
565
Merseyside
Thank you so much for the support and hugs - boy do I need them just now!

Mrs Spooky, I'm so sorry to hear of your mum's death and thank you for your opinion - I think it's a very valid one.

Well tomorrow is the first visit from the CPN - unfortunately I have to be in work so I have no control over what's going to happen at all. Maybe it's better that way because last time she saw mum she was at my house and she did say they wanted to see her in her own house next time.

I'm still kind of mad that they think I'm lying - what could I possibly gain from it?

I had a long talk with my dad last night and explained that no matter how uncomfortable he feels he must tell the truth or these people will walk away and he will get no help. He said he understood and would do what was necessary.

I actually had a peaceful nights sleep because I believed him (although others close to me have said he'll do what he did last time and say everythings okay when they ask him).

A conversation with him today made me think they could be right - as I was saying goodbye to him I said "I'll ring you tomorrow to see how it's gone. Remember it's important that you tell the truth so we can get help for you and mum."

His reply? "Hmmm."

Oh dear... His problem will be that if he bails again this time I will have no credibility with these people (not that I seem to have any now) and they'll never believe another word I say. In which case I'll have no choice but to say "here's the names and numbers, get on with it".

He may do the right thing - I can only hope so.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Oh Kate, what an impossible situation.

I do hope yor dad can bring himself to give the full picture tomorrow, but as you say, he's quite likely to duck it. You can only hope that your mum is in 'challenging' mode tomorrow.

Good luck, let us know how it goes.

Love,
 

Nell

Registered User
Aug 9, 2005
1,170
68
Australia
Dear Kate,

This will sound very cruel and perhaps you will reject it out of hand . . . .

If your Dad does gloss over things, I suggest you tell him there is nothing more you can do to help him.

Tell him that the officials do not believe a word you say because he is telling them otherwise and that they believe him because he is closest to your Mum.

Tell him that you know he is trying to protect your Mum but really he is not helping her or himself.

Then (if you can bear to do it) have no contact for 48 hours. :eek:

I know this sounds extremely hard-hearted but it is only "tough love". Until your Dad faces the need to get help, no-one will take any notice of you. If he has 48 hours in which to contemplate conrinuing as he is without help, and without the comforting thought that you are going to "do something" to fix things, he may start to realise he has to act.

At present he can continue with a form of denial by seeing you as his fall-back position. If you can bear to withdraw this for a short period, it may help him acknowledge he really DOES need help.

I know this sounds very hard hearted and you may well decide you cannot or will not do it. May I wish you the very best of luck, no matter what you decide to do?
 

Kate P

Registered User
Jul 6, 2007
565
Merseyside
Okay update time. On the good side dad did tell the CPN that everything I had said was true.

On the downside he couldn't provide a lot of detail about what had happened or what was happening now except that cognitive behaviour therapy had been mentioned (which aggitated my mum no end) and the possibility of mum being admitted to an assessment ward. What possible good would CBT be at this stage? None at all - it's ridiculous.

Dad was very annoyed that she got mum's name wrong and mine and other important details. It's so unprofessional - how hard is it to flick through the file in the car before you go in the house? It doesn't inspire confidence or feel like your case is of any importance at all.

Anyway, the CPN rang me to update me, which I thought was at least something. It would seem that mum was very aggitated about her presence there today and the longer she stayed the more annoyed she got. It's hard to pinpoint but I really don't like the way she talks to me.

She said she had discussed all this in front of mum because "there's no point in us all pretending she doesn't understand and doesn't get a say in what happens to her" - actually there is - she can't speak and doesn't understand us speaking to her so how is she expected to know what we're on about? For example when I've asked her to bring me a spoon she brought me a duster. Plus, mum seems utterly in denial about it all (not sure whether she doesn't understand or doesn't remember)and we were happy to leave it that way - they disagree, we must telk about it in front of her because she will then be able to make an informed decision.

Now, could be that at this point I'm feeling touchy but she said that mum put her own coat on because she wanted CPN to leave so she could go to Tesco (for the second time today!). CPN said "I explained to your mum that it was time for lunch - it's all about reminding her what time of day it is and what's expected."

Er, no it's not. I don't kow if it's different with someone with AZ or VD but with FTD this is pointless - she doesn't understand what we're saying and nor does she care - she has a compulsion to go to the shops and she's going - and if we don't take her the several hours of rampaging ensues.

I'm sorry this is such a long ramble but they just have no idea what they're dealing with - part of me wants to ring and say "shall I send you some information so you know what she has" but it feels like a very rude and disrespectful thing to do but they clearly have no clue at all and are treating her an an AZ or VD patient - SHE ISN'T! (Sorry had to shout there!).

Anyway, they're going to contact us again on Monday to arrange the time for the carer's assessment and to see about the admittance to the assessment ward.

I just don't want to deal with these incompetent people but what choice do we have? Eeven if we ditch our consultant we still have to deal with the same CPN and SS don't we?

I'm sorry this is such a long rant - I think my head's blue from banging it against the wall.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,399
Kent
Dear Kate.

The one and only time a CPN paid us a home visit was a disaster too. I had spoken to her about Dhiren, told her how private he was, what an introvert and how embarrassed he was about having Alzheimers and she was unable to take it on board.

When I showed her the door, I told her she`d been overfamiliar and intrusive, and then I phoned the consultant`s secretary and told her exactly what had happened. I received `tut, tuts ` and sympathy.

The woman was incompetent and I have been loathe to ask for someone else.

I was going to PM this message to you, because I know there are many wonderful CPNs out there and didn`t want to be too judgemental. But even if we are the only ones who have had to tolerate such inadequate service, we are two too many.

Sympathies and love xx
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Dear Kate

I think I would be inclined to send them the information you have on the basis that it can't get any worse, I wouldn't think. They won't like it, it's true, but they are actually being worse than useless at the moment. As for being rude or disrespectful - well that's how they're behaving towards you. I don't know - would you be better or worse off with a different consultant and CPN or even no consultant and CPN? Actually - surely there must be more than one CPN available - I'd still be inclined to go over their head and make a stink about all this since I would like to think they can't treat your family like this. I may be being overly optimistic.

How did your father feel about the assessment idea? I am wondering if that would be one way to try and get your mother to someone who actually knows something about this disease. Cognitive Behaviour Therapy? If you do complain I would definitely point this out as one of the ridiculous suggestions you have had to cope with.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
CPN said "I explained to your mum that it was time for lunch - it's all about reminding her what time of day it is and what's expected."
Dear Kate, this would be unbelievable, if I didn't believe it! I also think you should send them the information, with a covering letter highlighting your mum's symptoms.


Cognitive Behaviour Therapy? If you do complain I would definitely point this out as one of the ridiculous suggestions you have had to cope with.

Hear hear!

I think you should write to your mum's consultant, with a copy of the info sheet and your letter to the CPN. You deserve better than this.

If you're offered assessment, I'd go for that too. You and your dad need a break to sort your heads out.

Love and sympathy,
 

Mameeskye

Registered User
Aug 9, 2007
1,669
55
NZ
Hi Kate

Can't help the way the others can..but like you have seen that the medical professionals can get it so so wrong.

Thought I would jsut send some (((((((((((hugs))))))))))

Thinking of you and your family

Mameeskye
 

Kate P

Registered User
Jul 6, 2007
565
Merseyside
Well a new update...

The carer's assessment still hasn't been done despite the CPN and SW coming out to see mum and dad on Monday - what else did they come for? It's a mystery to me. I have asked them to arrange this as I can't contact Crossroads etc until it's done.

On the plus side mum was not at all happy about them being there and refused to acknowledge them other than to forcefully say "no,no,no,no" when they suggested bringing in a carer to help dad. I mean on the plus side because it seems they finally believe what I've been trying to tell them about her condition.

On the downside dad has decided he doesn't want mum to go into an assessment ward because it will upset her. I have no doubt that it will but I still think it may be better for her in the long run if we could get her medication sorted so that everyday is not filled with anxiety and upset for her. Maybe I'm being idealistic thinking they could achieve that? Either way it's his decision and I will respect that.

I do feel that he's taking a bit of a backward step if I'm honest but I guess that's to be expected sometimes. I'm going to be very selfish and have a bit of a whinge and say that I'm a bit sick of flogging my guts out day after day to get him help only for him to keep changing his mind when we find it. It's exhausting (as I'm sure you all know) battling for help to only get no end result anyway. Sorry I'm waffling a bit now.

I don't understand why he complains so much about how he needs help but then won't take it when it's offered?

Again on the plus side the POA finally came through so my sister and I are busy sorting out the relevant benefits and stuff. Dad wants me to get legal advice on what they should do about their savings and stuff - does the AZ society have a legal helpline?

I must admit as uncharitable as it is I feel like giving him the name and numbers of all these people and saying "here you go, when you can be bothered making a decision ring them".

I'm sorry I'm sick and doped up to high heaven on all sorts of pain killers that are making me whiny - I'll pull myself together again soon!;)
 

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