• 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.

So bizarre !

Ann Mac

Registered User
Oct 17, 2013
Thanks sue xxx

Go autocorrect!

Having sat in a meeting while NHS and LA played funding table tennis I was totally expecting this. I got so flipping mad I could have slammed their heads into the table. :mad: They seem to have lost sight of real people being effected by this and see it as a goal scoring exercise. I had the double wammy that after all of this they then thought they might want to conduct another capacity test. :eek:

I really hope you scared the **** out of the ward manager; he totally deserved it.just think how much NHS money has been used up keeping MIL in hospital already.
We, yep - I think I scared them - because OH has just come up to the office to tell me that (magically) Mil is now being transferred this afternoon.

And neither he nor I believe for one minute that this would be happening if I hadn't lost it yesterday - and once again, so disgusted that this is what it takes, every damn time :(

I feel for you, we had the same thing with the capacity test - that and yet another best interest meeting :(


Registered User
Jan 5, 2014
Ann - hope the move goes ahead, fingers crossed.

It is so annoying when we have to rant to get action. Hospitals seem to work to their own bureaucratic rules.

Even though it's a while ago I know I will have to rant when something happens with mum.

Just found out (via a FB post of a club I belong to) that a friend of mine died on Tuesday. He was 87 - I first met him when I was a teenager at a canoe race and then moved up here and he was part of the same club so he came to our Christmas parties etc. He was often the one to knock the Jenga over. 6 months older than my mum.


Registered User
Oct 5, 2013
Another one with fingers crossed - are we going to get anything done this afternoon ladies?!

Sorry about you our friend JM.

I found out yesterday that my friend who died isn't going to be cremated until 21st! Apparently she wanted the service conducted by a friend - and she's just gone on a fortnights holiday!! Glad I didn't have to wait that long when OH was cremated, I would have been in pieces!!


Registered User
Jan 5, 2014
Some people want to wait until everyone can get there.

My friend died on Tuesday and his funeral date is already announced as 15th. Think the children may want to go to this one, they've never been to a funeral before (well dau went when she was small to FILs - but no idea what was happening then) - funeral is at 3.30 so logistically not too much time out of school and I presume school uniform is the appropriate attire for children to wear.


Registered User
Jul 30, 2014
Fingers and toes firmly crossed, Ann. --I shall probably fall over! ;)

JM - so sorry you're having the loss of another friend to deal with.

I've spent today organising the final resting place of my father. My beloved elder sibling has firm views but as is pretty typical it's us spending considerable time, a big steaming portion of stress and a lot of money sorting it out. :eek:


Registered User
Sep 10, 2013
Lytham St Annes
Anne, I don't think I have ever posted on here but I read every day and just want to say how wonderful you are doing managing all of this - your MiL is very lucky to have you all on her side.

Of course you can't help but feel for all the poor people who are facing this alone and are not up to the tremendous fight it takes when dealing with these people.....so sad.

I'm crossing everything now for a good outcome and news she is in and as settled as can be x

Amy in the US

Registered User
Feb 28, 2015
Yes, Ann, all digits and extremities are so firmly crossed my husband will come home to find me in a twisted heap tonight. Hooray for the straight talking manageress; sounds like she will be MUCH better to deal with than the hospital. Not that it's much of a comparison.

JM, I'm sorry to hear about your friend.

RedLou, sending a big squishy hug and I'm so sorry. I don't know why this stuff has to be so difficult, but it is. I imagine this stirs up all sorts of emotions for you. Sigh.

Ann Mac

Registered User
Oct 17, 2013
Morning everyone - and thank you to you all for the crossed fingers and good wishes! Amy - I hope that your DH didn't come home to find you in too much of a twisted heap! :) And Hello Diane - nice to talk to you x

PC has been repaired, thank goodness - simply the 'button' to turn it on needed re-setting. Very glad - having to constantly check the auto correct was a pain!

At last, Mil is at the home (Can hardly believe that I am finally typing that!). We phoned just after 6pm last night - the home having asked us to give her just a few days to settle before we visit - to find that she had been very tearful initially, but that she was now busy 'looking after' one of the other ladies there and seemed quite calm. Its possible that you heard mine and OH's large sighs of relief - given the behaviour of the last couple of weeks, we were both worried that she might really kick off from the start. The plan is to phone daily for the first few days, visit Saturday or Sunday, then try and establish a routine of visiting 2 - 3 times a week. I have no idea what belongings she took with her from the hospital, I don't know if the missing items have been found, so I guess after Saturday/Sunday, one of the 'to do' items will be chasing that up.

Oddly, both OH and I are just feeling relief. There is no guilt and not even much sadness at this point - I think its because we both feel that this has to be better than her being in the hospital, that it has to be an improvement. Whether we will stay feeling like that once we visit, is anyones guess. (Not that I'm having a go at the hands on staff at the hospital, btw - as I've said before, 99% of the time we found them really great with Mil - its all the other issues, primarily the poor communication and organisation that are glad to say goodbye to!)

JM, I'm so sorry to hear about your friend xxxx. Yes, I think school uniforms are acceptable - certainly that's what my daughter wore to my Mum's funeral - though we did swap the deep redyy-purple uniform jumper for a plain black cardigan.

Red, so sorry to hear of the hassle your older sibling is putting you and your OH through over your Dad's ashes. I hope you guys are able to stand firm and not be dumped with all the stress and expense xxxx

Yesterday afternoon, we hovered around the phone till after 2pm, just in case there was yet another last minute hitch. Once we were sure that the move had gone ahead, we decided to head out for a couple of hours - I think we both felt that being busy would help - and I actually made a start on the dreaded Christmas shopping. OH and I did a lot of talking, and we both realised that we felt that this was finally the start of a new chapter. We don't kid outselves that its plain sailing from here on in, but by comparison to the way we were living this time last year, we both acknowledged that the current situation has to be better for us - and that its probably better for Mil too, as for her to be cared for by people who are not constantly on edge and exhausted has to be an improvement. We are actually making plans - including talking about the possibility that we (as in OH, youngest and I) may be able to get abroad for a holiday next year, for the first time since before Mil's diagnosis. Thats a very giddy thought, not something that we believed would be possible for probably several years to come . I know Mil hasn't been here for several months, but its only now we have her safe in the home that we feel we can accept that things have changed permenantly. I don't know if that makes sense - but we both feel like a massive weight has lifted, that we have made the right decision, for everyone involved.

Supposed to be my day off today, but I'm going to have to put in an hour to sort out a couple of things that I want to get finalised before next week, when it looks like I am going to be extremely busy. Then I intend to tackle the mallen streak (yup - again - had my hair cut earlier in the week and it really needs doing!), pick up my train tickets for next weeks gallivanting - and chase up the school issues.

Hope everyone has a good day xxxxx


Registered User
Jan 29, 2009
So pleased to read this. Let's hope the majority of the hassles have done a runner and things start to become less stressful and tiring.

Here's to a good new chapter for all of you xx


Registered User
Dec 21, 2015
Hi Ann - been following this ridiculous bureaucratic rollercoaster and just wanted to say YAY.
I hope you have an enjoyable weekend x


Registered User
Jul 30, 2014
I echo the yay! Fantastic that you are feeling relief and a sense of moving on. Cheerleaders united are shaking their booties. :eek:

2jays -- I'm fond of both my siblings but lordy! is my brother officious and bossy sometimes! He loathed our mother and I do believe it's because he fears he might be like her. :) --However, if anything goes wrong with our arrangements I am telling him to take over!

Grace L

Registered User
Jun 14, 2014
AnnM, I'm so happy for the Mac family. I hope MiL settles in a few days.
I'm cross on your behalf with all the missing laundry. Careless that sooo much is missing.

JM, sorry from me too about your friend.

Wellll.... I'm still ignoring 'begging' messages / calls from family for me to apologise to SiL.
.....'sigh, oooohhhh, You know what she's like.... do us all a favour, and just apologise' ....
SiL is still pestering brothers/ SiLs about my being 'off hand' with her.

I had a similar problem when she was snooping in my cupboards looking for 'evidence' of a man...
(For those if your who don't know, Sil thinks I'm hiding a man in my home).

I told SiL off for snooping, and she 'flipped'.
Forget about the fact she was going into wardrobes and cupboards.... 'on a mission'...
She complained to her family, who then rang me asking me (several messages) to apologise.

Anyway..... the other day I didn't know it was going to be SiL when I opened the door.
Thought it was someone else who rang to say they were on the way.
My heart sank when I saw her, but hard to turn her away when she is over the threshold.
Pharmacy are still delivering me meds till my knee is better.
They knock the door, SiL jumps up.... I think she thought she was about to meet my man.

I'm staying strong, though yesterday felt lousy. Not sure if I had a bug, or was just sick with stress.
I still feel drained, really really tired, and now I've got a bit of a cold....
I did nothing yesterday. Nothing at all. Even having the TV on irritated me.

I don't think I have much choice other than to step back from doing anything with, or for MiL.
InLaw family are not capable of hearing 'no from me'.

I'm sure the ONLY reason they want her to move in with me is to preserve their small inheritance.
I have 5 Bil/Sil (plus spouses) = 10 angry people , that without me giving into bullying will most definitely lose out on any inheritance.

MiL is going to be one of those EMI residents that has to give up their home.
There is no other way, they wont have Mum live with them, neither will I .

In law relationship breakdown. No other options. I am the 'key' to them receiving inheritance money.

I've not said anything to anyone else (not even my sister at this point), but it looks like that is it ....
I do not need the stress, bullying, trying to control me.
There are a few more things they have tried, I've not told TP about.

My dear late husband would be so sad at his family 'fighting' over money, MiL is not even in a care home yet.

Its not even New Year and I'm thinking about starting a new chapter in my life.

Take care xxxxx

Amy in the US

Registered User
Feb 28, 2015
Grace, it's amazing how people count on "their inheritance" and manage to overlook the fact that there is no inheritance until someone actually dies. Until then, it's their money, not their kids'! (There is an old saying about not counting your chickens in advance of the eggs hatching, which is applicable here.) Such a strange mentality, but then, nothing you can tell me about your outlaws shocks me any longer.

Ann, massive cheers and much relief that the move happened. I know it likely won't be completely smooth sailing but I feel that anything has to be better than the stressful limbo of the hospital. I also feel that visiting the care home is likely to better, at least from the standpoint of parking. I think it's smart not to visit for a few days.

While the care home will still likely misplace some clothing now and then, I can't believe it will be on the scale of the hospital. I hope they will be doing the laundry and that will be one less burden for you, Ann.

Go ahead and make those plans for a holiday, Ann. It will give you something to look forward to and build some good memories for you and OH and youngest.

It must feel disorienting, MIL's sudden move, after all the waiting and let down and frustration. I do think it's a positive for everyone, including MIL, but it's still a massive shift. You have had a lot going on, with MIL, and the job change for OH, and the new job for you, and your youngest at school, and your older daughter moving into her own flat, and, well, that's just a lot to be coming to grips with.

I think we are all very pleased and relieved for you that MIL finally has a placement, and at least in my case, it's hard to articulate how pleased and relieved, because there has been so much stress and waiting!

Someone tell me where to line up for the cheering section!!


Registered User
Aug 25, 2015
South coast of England
Another one here for the cheering section :) I am so very glad that MIL is finally in the home, after all the fuss and false starts. I hope she settles quickly and is as happy there as she can be.

Ann, I'm not surprised that you feel relieved. You have had so much messing around, false hope and broken promises :mad: I am also relieved. I'm also glad that the home has some sensible, down to earth staff who will be open and honest with you.

I wonder if you will ever find the lost belongings??

Grace, I guess you must feel sad that things have come to this with the outlaws. I truly believe that you have done more than any reasonable person could ask to help MIL and appease the others. The thing is that they are not reasonable! Please allow yourself to rest and heal, your body has gone through a lot.

Red, I'm sorry that your bro is making things difficult for you. We had something similar with regard to some sort of memorial for my MIL.

We took Mum to the dentist today for 3 fillings. She was very stoical but it can't have been pleasant! She seems to have accepted me going into the loo with her. Before we went to the dentist I said we should go and she insisted she was fine. We went anyway and she was both wet and soiled :( I really need to get my head around how much time we need to locate Mum, take her to the loo, do any clean-up and changing needed before we go out. We were a minute or two late for our appointment which I find very stressful.

Ann, thanks for your comments about respiradone. Mum isn't on anything else that might be causing the problems - but thanks for thinking of it. She has nearly 5 weeks of meds in blister packs, so nothing is going to happen quickly but I do think it is worth a try.

No word back from SS, the staff where Mum lives are going to put in a referral form too. Can't remember how long it is since the pull-ups were ordered from the continence service, buying them is costing Mum a fair amount :(

I'm wondering what on earth to get Mum for Christmas :confused: I'm wondering about one of the dementia specific jigsaws that we could do together. Not sure what level to pitch it at though - I don't want to insult her with one that she considers far too easy. On the other hand, there's no point in upsetting her with something she can't manage . . .

Hope you all manage to do something that you enjoy over the weekend xx

It's hubby's birthday on Monday, son is coming down for the day on Sunday. Son is off to New Zealand then for 2 weeks with work - lucky lad!

Ann Mac

Registered User
Oct 17, 2013
Hi everyone,

2jays, hun - no apologies, you have more than enough to think about at the moment - sending you massive {{{{{{{{hugs}}}}}}} and thinking of you xxxxx

Believe me guys, I so appreciate the cheerleader boogies - thank you:D Its odd, but there's this feeling that she is 'safe' now we have a permenant place for her, and its a weight lifted. OH phoned again yesterday evening, she'd slept well the night before, no major problems during the day and when we rang she was 'having a cup of tea and nattering with one of the other ladies'. And we were told how lovely she is. Which was great to hear. But, OH and I are both very aware that Mil's ability - even now - to turn on the hostess mode when she finds herself in a new situation or meets new people, is still pretty good. We're not being pessimistic (I don't think) rather just realistic. It took a while for the staff at the hospital to start commenting about how difficult Mil can be, ditto with each of the two day care centre's she attended before that - we are prepared for it to be the same with her new home. Just hoping that the 'hostess mode' lasts long enough for the staff to see glimpses of the lovely lady that she was and (sometimes) still can be, as I think if they see that, then perhaps it will be a little easier to deal with her if/when we do see the paranoia, aggression and demanding behaviour return. Though wouldn't it be fab if it didn't? Can't help but hope.

Grace, I wouldn't be surprised if you feeling 'lousy' didn't have a lot to do with the awful pressure those foul out-laws of yours are currently putting you through - Oh, I would love to give them a piece of my mind, I really would! Glad you are staying strong, and think you are right to step back entirely. I will be so glad when you are fit enough to tackle moving away from that poisonous bunch! xxxxx

I'm not holding my breath over Mil's lost possessions, Slugsta. I've been through all her clothes now, weeded out anything at all tatty looking or now unsuitable, and she has about 8 pairs of trousers, a dozen tops, approx 8 bra's, a couple of cardies and about 10 sets of nightclothes, even if the missing stuff doesn't turn up. I will chase it up, but even if they don't appear, she has enough there that she shouldn't be short.

Ouch for your Mum at the dentists, bless her for being so brave x Its a hard balance, allowing enough time to get somewhen ready for an appointment or outing, I used to find - had to leave enough time 'just in case' there were any problems, but not so much time that you have the person ready so early that they then had time to get wound up :rolleyes:

Mil spent a small fortune on pull ups as it took the clinic here so long to amend her order - I found buying in bulk off the internet was far, far cheaper.

Had a busy day yesterday, which included me putting in an hour or so at work, running errands etc. The tumble dryer also died on me - beyond repair, so OH and I had to go buy a new one - not what we needed with just a couple of months to go till Christmas, but hey-ho:rolleyes: Now I'm not going to be doing Mil's washing, lets hope this new one lasts a lot longer! In the middle of all that, I was determined to take an hour for myself and head to Moss Valley, a near-by nature reserve, where you can always count on the Autumn colours being spectacular - so me and my camera had a lovely hour wandering round the lake and through the trees - Mother Nature has outdone herself this year, I think!
Adding a few pics - hope you all enjoy and have a peaceful day xxxx


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