So bizarre !

[jugglingmum]

Well trying to catch up, and didn't have time to comment yesterday, no time to read this morning, still school hols here.

Ann - hugs - you have cared so tirelessly for her. The system has let you down big style. I'm wondering if he could see underlying agitation and realised she wasn't suitable for the bed he had booked or did he tell you before he arrived. Like others my jaw dropped as I read some of this, I want to cry for you.

As you are self funding( I suspect not but trying to offer something positive) is it worth looking at other dementia/EMI homes further away which may be able to take her, I know you'd have journey to visit her, but if say they were near the zoo than may balance out, I know my friend was told of one in Upton when trying to place her MIL (she got the local one she wanted near me), it sound like you need emergency respite and clearly you wouldn't want her to go back to the home she was in. I realise taking her out of area may cause issues with hospital as they then may try and say she is no longer in their area.

Whilst vastly different, I do know what you and Grace mean about not complaining about things as it may do more harm than good. There were issues with some boys behaviour when dau was first at high school and we later found out lots of other parents complained when we kept quiet.

I have made a formal complaint about the police officer who interviewed me after the incident I had the other day, as I don't want him spouting the same nonsense if he ever goes to see other cyclists about incidents. Felt rather stressed about it all and a few sleepless night, the inspector it has been allocated to contacted me last night and was appalled at what he said so hopefully some joy, I had to list on the form the outcomes I wanted and one of them I listed was ensuring police are suitably trained to deal with cyclists, which she thought was a valid point considering. Didn't feel up to saying on here I had complained until it had progressed a bit.

 

[tigerlady]

Ann - I have been ill in bed for a couple of days and so have only just caught up on your thread - I am so shocked and upset that things have turned out for you like this. I too am sitting here open mouthed and dumfounded!

And also the awfulness of the respite place - I would imagine most care homes are short staffed, but the non-caring attitude of the staff that are there is dreadful! You must kick up a real fuss to find her dentures. When I visited my mother once, she had her dentures in before lunch but they were missing afterwards. I made the kitchen people go through all the slops and sure enough they were found.

I cannot believe that a place cannot be found now for your MIL to be assessed. You have been doing everything by the book but I think it is emergency time now. Its no good just trying to find another respite home for her - she HAS to be properly assessed and meds found to ease her torment.

I suggest you ring whoever you can, and get the emergency assessment team out - it will mean a section, but I think in this case it is for the best. I'm sure they will find a bed for an emergency. Maybe they would allow you to take MIL in yourself - when my husband was sectioned it was all very calm (apart from me being in bits) and they allowed an Age UK guy who worked with the CPN to take him in.

My heart is breaking for you - to have to go through all this. Sending love and hugs xx

 

[RedLou]

Like Grace I think a complaint, very cool, calm, detailing why MiL needs assessment - a brief para of her behaviour - and the run-around you've been given - PLUS cc it to your MP and the local reporter you know - I'd bet there was some immediate action taken. I have a hunch if you don't kick up a stink you'll be given the runaround time and time again.
*huge hugs*

& well done Mr Mac, but he cannot leave you to cope on your own with his mum.

 

[1954]

I know this sounds awful but could you take MIL to a/e and leave her there? They would have to act surely


1954 x

 

[IzzyJ]

AnnMac, Iam so sorry and furious on your behalf (been out of contact for a few days, no landline or broadband). The whole situation is just appalling. I do actually think Tigerlady is probably right re the emergency team, but I am so so sorry that you, the most caring and forgiving and generous of women, have been put in this awful corner. Nobody seems to care what happens to carers, or to PWD.

 

[Moonflower]

I suspect that unless you are prepared to at least threaten to take MiL to A&E, contact the press, contact your MP etc etc then they will continue to give you the runaround.
MiL desperately needs proper assessment and treatment. And your family deserve a better life than this. But resources are scarce, and I think that a planned admission for MiL will keep being cancelled because beds are taken for "emergencies", probably often in cases where the PWD doesn't have family to care for them. Shamefully, I think you will need to make MiL and emergency before anything will be done

 

[jugglingmum]

I know this sounds awful but could you take MIL to a/e and leave her there? They would have to act surely

I do think this is an option, not a nice option, but it would get things moving, it doesn't mean you don't step back in once she has a bed, but forces them to find a bed, but obviously traumatic for MIL whilst she spends hours dumped in A & E

 

[cragmaid]

I'm not going into the political ( small p) rights and wrongs of the situation, now is not the time, but you need help now. Complaints to the CH SW and all do need to be made, but securing a safe place for MIL is paramount. You have passed any and all lines in the sand now in my opinion and to procrastinate now would be cruel to you all.
Have you got a list of homes with EMI capacity? I would start ringing them now. It would have been nice if she'd been able to go into the one home she is familiar with, however spacial familiarity is less important surely than safety. I honestly feel that she and you ( and that includes all the Macs) need serious, if not permanent, time apart and that distance should not play a part in the decision.

Her dentures may turn up, sadly they may have gone out in the waste too, lots of elderlies seem to wrap them in tissue and put them in their pockets which then ends up in the bin. I got new ones yesterday....she's more than welcome to my new ones, it might take some time before they are usable!!! I did have the last lot for 20 years( )

Thinking of you all.....Maureen.x.x.

 

[2jays]

Oh ann. I have no words to express how I feel about this hideous situation you are in.

A squishy hug is all I can offer xxxx

 

[Batsue]

Ann, you have my sympathy for the awful situation you have been left in, I hope that you do not suffer any fallout over the weekend caused by such callous treatment. Sending a hug xxx.

 

[Ann Mac]

A quick update . . .

Waited for the promised phobe call - by just after 3, we got fed up. I phoned, got consultants secretary. Initialy, she wasn't sure that he was 'available', from what she said - but I said that I was intending to phone the Health board complaints department and suddenly, he was on the line. There might be a bed - he said he was trying very hard. He would phone me back in half an hour.

An hour later, with no word, I phoned again - this time, he wasn't available. I told the secretary that I would give them just 15 minutes, then the complaint would be formal.

I phoned the health board exactly 15 minutes later - outlined the whole sorry tale, from the constantly changing consultants, diagnosis and meds, through to the fact that it was agreed 8 months ago that asessment would be the best strp, but how I had been fobbed off with how the ward was full with EMI patients waiting for placements, and I rounded it off with how we had now been let down last minute, the impact on Mil and how I was sick of having to scream and shout and complain to get basic, decent treatment for Mil. And that if this wasn't sorted then OK - I would scream and shout and I'd do it not only to the health board, but to any and everyone else I could summon up.

10 minutes later, and finally a call from the hospital - many assurances that they were looking for a bed, that they hoped to have one sorted soon - might be tonight, might be tomorrow. Or Sunday. Or Monday. But no later than Tuesday.

Not good enough - again, I made it clear that I wasn't happy, I spelled out the impact on Mil and us, and said if they wanted to make me kick up s**t then fine - I'd play their game and I would be screaming and shouting, just like I've had to before. Many promises about how they were trying. But as I pointed out, still we are sat here waiting.

I won't take her to A&E - I just can't. This is no more her fault than it is ours and I won't lower myself to their rotten standards and cause her more stress. She is currently completely off the planet, no links to anything like reality, coming out with all sorts and just on the edge of getting very agitated - there wasn't much of a link to reality when the consultant was here this morning, she told him that the dog had taken her to town yesterday and that the dog had kept her upright and stopped her falling. Her walking and balance today are terrifyingly bad, a huge deterioration to when she went into respite - we've contacted the respite home to find out (a) had they found the dentures and (b) could someone please let us know what the hell caused the head injury and had she been checked out when it happened, as we were concerned at how badly she seems to have gone downhill since we picked her up. They were also going to phone us back, They also haven't bothered.

So - sat by the phone waiting. Will let you know when the hospital/home/anybody bothers to get in touch

 

[Batsue]

Ann, if thing get too bad call 999, it may get you some help xx.

 

[RedLou]

I phoned the health board exactly 15 minutes later - outlined the whole sorry tale, from the constantly changing consultants, diagnosis and meds, through to the fact that it was agreed 8 months ago that asessment would be the best strp, but how I had been fobbed off with how the ward was full with EMI patients waiting for placements, and I rounded it off with how we had now been let down last minute, the impact on Mil and how I was sick of having to scream and shout and complain to get basic, decent treatment for Mil. And that if this wasn't sorted then OK - I would scream and shout and I'd do it not only to the health board, but to any and everyone else I could summon up.

Well done, that lady.

 

[jugglingmum]

Ann - just sending more hugs

 

[IzzyJ]

Dammit, it's the lies to get you off their backs that gripe me most. "We'll call you back - no really, we'll call you back, I promise faithfully". I've been there so many times, and shouted and complained. Keep going, Ann, we are all with you on here.
DC is disgusting though: follow up your (unreturned) call with an email, copied to the Care Commission, and the Health Board?

 

[LadyA]

Dammit, it's the lies to get you off their backs that gripe me most. "We'll call you back - no really, we'll call you back, I promise faithfully". I've been there so many times, and shouted and complained. Keep going, Ann, we are all with you on here.
DC is disgusting though: follow up your (unreturned) call with an email, copied to the Care Commission, and the Health Board?

Absolutely. Totally apart from your MIL, there is nothing that excuses what you described in the respite home when you went to pick up your MIL.

 

[Spamar]

OMG, just caught up.
Ann, I am so sorry for you, Mr.Mac, even mil with all this mess. There must be many more pwd who haven't got a person like you to protect them as much as possible. I only hope that consultant arranges something ASAP.
My thoughts are with you, just as we dash off to catch ferry!
Keep smiling, S

 

[annebythesea]

So so so sorry it has come to this. Must be appalling to consider whether mil and all other respite residents are treated so terribly whilst their carers are quite rightly 'not watching' as they are - by definition - having a break.
A desparate, probably vain hope, but can the emergency social work team (does this exist in your area?) arrange some external carers to support OH with mil's care over the weekend?
Hoping so hard that you have a resolution soon.

 

[Slugsta]

Oh Ann, I simply don't know what to say. I am both and at the way things are being handled (I certainly won't say 'managed)!

To have the prospect of help snatched away from you at the last minute like this must have been utterly soul destroying.

The situation with the CH isn't acceptable. Being busy is one thing, being careless is another thing entirely. The fact that an elderly lady can have sustained a head injury without anyone even noticing, yet alone getting her checked over, is unforgivable. However, I know that all your energies are focussed on getting MIL in for this assessment, which is as it should be.

Huge congratulations to Mr Mac, I'm sorry that it has been overshadowed by all this business with his mum. However, he simply cannot disappear to work all day and leave you to handle MIL on your own. If things carry on as they are you are going to become unwell, physically or mentally - and then what will happen to everyone?

I understand why you say you cannot/will not take MIL to A+E and I respect that decision. I just wish I could offer some helpful advice!

I do hope that you will soon be here telling us that a bed has materialised and MIL is where she needs to be. Remember that word - n e e d s, this is not about you copping out or doing things to make life easier for you (although, doG knows, I think that would be justified!).

Sending you lots of cyberhugs ((((((Ann))))))

 

[Ann Mac]

Morning everyone,

Firstly, huge 'Thank You' for all the support - my heads all over the place at the minute, and I don't think that I've properly said 'thank you' for all the hugs and good wishes and advice. It all helps and it all means a lot - so thank you xxxx

No word from respite. I actually didn't contact them to shout and bawl and complain. I phoned them because we noticed on the evening we picked her up that Mil was 'oddly' confused, speech quite garbled and nonsensical, walking really, really bad - and when all these issues were just as bad the following morning, we simply wondered could they tell us if perhaps they had noticed anything - had she been this bad right through the stay or could it be traced back to the head bump ? (whenever that happened?) Or some other date or incident? . Also, she was really struggling without her lower dentures, and we are absolutely stuck here because I can't sort out dentist's and new teeth when we are in limbo waiting for a hospital admission. We are also having problems with Mil having frequent bouts of panic because she seems to be fixed in the belief that she has 'swallowed' the teeth in her sleep and its going to make her 'very ill' So, when I phoned them, it was simply to get info that was needed for Mil's sake, and to see if her dentures had been found. I wasn't at all acusatory - we had decided we would raise our concerns with the CPN first. However, the assistant manager I spoke to actually seemed quite affronted with me - first thing I got was an 'The staff weren't expecting you to come last night!' in very frosty tones. It boils down to we caught them out, as far as I can see. Had they not got mixed up about when Mil was to go home, I am pretty sure that her hair would have been brushed, her clothes clean, an explanation ready to explain the bruising and quite possibly, an effort would have been made to find the teeth - and if not, an excuse prepared for when we arrived. They are not doing themselves any favours by being off with us though - I'm not sure how they are going to justify that even after we spoke to a manager, we have yet to receive any info to let us know when and how Mil got the bruising, much less whether or not she was checked out after a head injury (we know it must have happened just a day or two into her stay, because the bruise is very yellow now and starting to fade) or even when her dentures disappeared. It would be hard for them to present any good reason for not being able to give us at least that much info.

As for the hospital - at 8.30 last night, the ward sister rang - to tell us that they still didn't have a bed. She said she is back on duty again today and will ring again - I assume to tell us that they still don't have a bed I'm not sure how reiterating that they have failed to deliver on Mils promised care and treatment is supposed to either placate us or make the situation better? Meanwhile, though I have little faith that anything will happen till after the weekend at least, we are stuck in waiting for a phone call - just in case. Because if by some miracle they do find a bed and we miss any call, that would quite possibly give them a handy excuse to not have a bed for several days longer.

( As an aside, I do hope that the consultant is having a nice holiday - it would be dreadful if it was being spoiled by him worrying about the misery that has been caused here and the impact its had on poor Mil and us! It is - afterall - not nice when your break is interupted by having to worry about and sort out issues relating to care - as we have found out, being as we have had to deal with multiple phone calls and with making arrangements for Mil's hospital admission during the latter part of our supposed 'break' - the admission, that is, that didn't happen!)

I also forgot to say that the consultant was a little uppity when he visited Mil here yesterday, because he discovered that the diazapam dose hasn't been changed - OH fairly strongly pointed out to him that being as no one had bothered to tell us that the consultant had been to even see Mil at DC, much less inform us that he had changed her meds, then the fault for that lies with him. Maybe it would be an idea to put a bit more effort into keeping us informed in future?

Meanwhile Mil is in an odd mood, very morbid and tending to be quite fearful. We are hearing a lot of garbled questions and comments, but the main thing last night was her going on about graves - her mothers, her fathers - and mine! I'm apparently buried quite near to where her mum either has been or is going to be buried. She also told me repeatedly that she was scared because 'something' is going to happen and its not going to be good - every chance she got she was whispering to me about this 'something' and she was guenuinely quite distressed about it. It would be easy to speculate that its some fragmented recollection of the talk she had with the consultant about going into hospital, but equally it could have no link to that at all - impossible to tell. There's also one hell of a drop in her physical abilities, including her walking being suddenly massively worse - she is really struggling to either help with washing herself or dressing/undressing, in the way she did before going into respite. Partly its that she is struggling to coordinate, partly its that she can't seem to work out how to even approach certain physical actions, like taking her slippers off, and partly its that she is struggling to understand what it is I am asking her to do. She is also not eating well - some of that is to do do with the dentures, but also, she is insisting she isn't hungry - where Mil is concerned that really is scary and so unlike her. Last night, she barely ate any tea, managed a weight watchers low cal soft pudding - but refused porridge at supper! It isn't that she seems ill as such - its as though there has been a huge, HUGE decline in her condition.

I felt bad for OH, because all this has really overshadowed his success - he has worked so hard for this and I am really proud of him. He has basically pased all the requirements needed that now mean he is 'acredited' to work for the prison service. And that is a much tougher thing to acheive than I would have believed. It means he has the option to move to a job with security, better pay and conditions and one where hopefully, he'll get job satisfaction back. It also means up to six weeks residential training at some point - and thats the biggest drawback, but one we are going to have to work around - we have to think of life 'after Mil' too, as awful as that sounds.

If there is any news, I will let you know - but I'm not holding my breath or holding onto any hope that there will be.

Hope you all have a good day xxxxx