So bizarre !

[CeliaW]

Ann, that is dreadful, I have no answers but wanted to send you a hug. This is the type of thing that the Alz Society need to take to the press as I am sure this is happening all over the country - and stealthily, as this won't be publicised and others will find out as you have.

Maybe this is the point where you need to start researching a permanent care home? I know you have done your damnedest to keep her at home but, without the chance of a respite break, this will destroy you. Your MiL certainly has challenging behaviour - maybe it's time for someone else to manage that before you make yourself ill.

Take care xx

 

[1954]

Ann I really feel for because that is exactly where we are

The only difference is we get regular 2 week breaks throughout the year organised by the LA. We get the dates in Decemer for the whole year and are set in stone. So anything else that comes up for us to do is a complete no no".......

Sorry if I've missed something here but could regular respite be set up for you? I know it will not solve the problem your children's graduation etc but at least you would something to look forward to

Huge hugs xx

 

[Spamar]

I'm not surprised, it's the same in this county. One friend of mine threatened to leave her mother on SS doorstep if they didn't sort something out! That worked, but it could be a risk!
I was asked a few years ago what I would want ( local cottage hospital where OH goes to daycare) and that is what I, and a few others, said. It hasn't happened. I've been lucky in that OHs respite have been more or less NOW, and he's self funding. But there minimum is 2weeks. It also helped that the home is expanding, so they are not full.
I'm afraid I have no solution for you could any relations come or mil go to them? But I'm sure you've thought of that.
Lots of (((((hugs))))).

Gave up on phoning gp yesterday! Will try again this morning or go online.

 

[RedLou]

This is not good. Time for the AS to do something/publicise this! Surely they must have been aware of the change??

 

[Beate]

You have my sympathies. It's the same everywhere, they can't promise you a bed and even if you book the dates you want, they can cancel you at short notice if say the person who occupies the bed the week before your MIL suddenly prolongs their stay and it was the only bed.

Do you have charities around that could help? I've been told about one called TLC hat does night time respite for a few days but they only operate in East London and Essex, and I don't know where you live.

 

[Tin]

The problem of respite came up here a few weeks ago, I had decided to give it a go, just over night so I could get some sleep!! At the last minute they cancelled telling me the bed was no longer available. A carer overnight would cost £19p.h. Although I cannot afford this, thought I'd ask agency if I booked a few hours of day sitting can they guarantee it would be the same person doing the over night - no was the answer. My choices are very few with respite, because it has to be some where that will allow mum to take her small dog and within easy reach in case of problems. So conclusion is not going to bother with respite again, just not worth it. Will continue to push siblings to come here-far easier!!!

 

[Ann Mac]

Well - I've spent all morning on the phone! My local councillor, local MP, Adult Social Care . . . both the councillor and the MP say they had absolutely no idea about this situation (Why not?), the local councillor going so far as to tell me he was sure there was 'something' - he phoned Adult Social Care who told him that respite was available, he phoned me back and told me to contact them. Which I did, and got passed round 3 or 4 people till I landed up with a social worker who confirmed that all provision for bookable respite care in the county has stopped. The council is basically saying that they recognise the need for carers to have respite, they have provisions to help with funding should a 'client' need it (actually, latest buzz word here, for those that need it - there are no clients any more - our loved ones are now to be referred to as PWS - 'People we Support' - pronounced 'Poos' - which is fairly appropriate as they are treated like S***, I guess!) BUT they have removed the availability of all respite beds so actually, despite the fact they offer to fund and that reccommend respite - its actually not available. Confused? Me too

So, I've now phoned the local press - and at this point I doubt if anything will change, but dammit, I'm so hacked off that I'm doing a bit of screaming.

The SW has just phoned me and told me that Day care are happy to have Mil for the full day, for Daughters show and oldests graduation - its not what they will usually do, but to be fair, they are bending over backwards. However, long term, it just isn't good enough, is it?

 

[Beate]

You go and give them hell, Ann Mac! I am always so proud when I read of members not taking the status quo lying down. Good on ya.

 

[gmama]

Hi I have been having log on problems and now I have it sorted. I am playing catch up with posts. Ann Mac your MIL sounds like a carbon copy of mine, my MIL lives with us and we go through all these things you do. I am loving this it's so bizarre how alike, my strangest day with my MIL was when she thought she was dead and did I not mind seeing her in her ghost form, she was thinking and laughing that if she drank tea it would pour straight out of her. She wanted to let people know that there is life after death and wondered if she could just go off and give some people frights. i just let her talk and listened to it all, I actually found it quite fascinating. She pointed to an old photo of two of her grandchildren and asked if they were born yet in this life, to which I said yes and they both now have children of their own. She was so happy in this dream state and kept looking at her arms and asking how I could see her. Two hours latter it was all gone and back to do I live here how long have I lived here for ( 6 years now) . Everyday is different some good and some I want to run away from. I will be looking forward to more of your posts Ann Mac thankyou..

 

[RedLou]

Well - I've spent all morning on the phone! My local councillor, local MP, Adult Social Care . . . both the councillor and the MP say they had absolutely no idea about this situation (Why not?), the local councillor going so far as to tell me he was sure there was 'something' - he phoned Adult Social Care who told him that respite was available, he phoned me back and told me to contact them. Which I did, and got passed round 3 or 4 people till I landed up with a social worker who confirmed that all provision for bookable respite care in the county has stopped. The council is basically saying that they recognise the need for carers to have respite, they have provisions to help with funding should a 'client' need it (actually, latest buzz word here, for those that need it - there are no clients any more - our loved ones are now to be referred to as PWS - 'People we Support' - pronounced 'Poos' - which is fairly appropriate as they are treated like S***, I guess!) BUT they have removed the availability of all respite beds so actually, despite the fact they offer to fund and that reccommend respite - its actually not available. Confused? Me too

So, I've now phoned the local press - and at this point I doubt if anything will change, but dammit, I'm so hacked off that I'm doing a bit of screaming.

The SW has just phoned me and told me that Day care are happy to have Mil for the full day, for Daughters show and oldests graduation - its not what they will usually do, but to be fair, they are bending over backwards. However, long term, it just isn't good enough, is it?

Good girl!
Long term, no - it isn't good enough.

 

[CeliaW]

I wish you success Ann and applaud you for doing what you have. BUT - you already have so much "on your plate" that it is inherently wrong that you should have to expend what energies you have left in fighting and highlighting the system.

I wish I could send these in realtime along with a wish for a quiet evening for you and OH as you surely deserve some less stressful time, but one consolation...these are calorie free!

Take care xx

 

[Grace L]

I understand your frustration Ann, I had the same problems with getting respite for my husband.
My last year or so caring for him, I was close to getting carer-burnout. I NEEDED RESPITE.

I had added problems of husband's seizures (only had these after stroke) ... and his violence.
He needed specialist care during these episodes, and not everyone could handle this.

I had the Carers Assessment (PAH !!) ... sorry, but what a waste of space.
It was decided I needed regular respite, CPN, Psychiatrist, Psychologist and SW all agreed, and suggested
I have 1 week off in 6 ..... ha-ha-ha, forgot to tell me that 'back in the real world', there is none available.

Thing is.... as far as they (this is my opinion) are concerned, they have suggested something to me....
they have fulfilled their 'duties as SW's'.... its not their fault they cant help me.

Its the same situation when I asked for possible Daycare / respite ...
None available, might be available at a cost of £70 a day ... but husband needs to not have seizures, not wear pads/ be incontinent..... or be violent.... not wander... or at risk of falling.

I did have a few 'emergency days' respite, but they said they would not have him back.
Got a bit of a shock when they sent me a bill as I thought it was going to be free.
Legally, I think I am entitled to several free days a year.

Ann.... I don't know what to say, or how to help you resolve this.
I spoke to my MP (face to face) during a National Carers Week, and told them all about the problems
we face as carers. I mentioned respite being a big problem, and we all need respite breaks,
but there is nowhere to go. It does not surprise me that nothing has changed since my husband died.

 

[lizzybean]

This is dreadful! I have respite vouchers, so far I have only used them for carers twice daily when I have been on hols (pre shoulder break, she now has carers anyway) I know that in six months/a year, who knows, that in order for us to get away we will need the respite vouchers for, well, respite!!!

I'm guessing that very well may not happen.

MIL does not live with us but when you are caring 24/7 it is an absolute necessity.

Shame on this government, probably the next & all LAs.

But good on you Ann, go girl. The Alz Soc should start a petition.

 

[Spamar]

Hi Ann
I hope by now you are sitting down with a glass of your favourite tipple!
I hope you get some results, both for you and to stir up the situation nationwide! I was lucky, I needed my respite NOW and got in easily. This is one time it helps being self funding! The first time I was only going to my cousins, so timing wasn't critical. and the second time I hadn't planned to go anywhere.
But I do so agree that respite is so important and there should be some free for all Carers,, whether self funding or not. It's a total disgrace when they say you can have it, but there's nowhere to go. Underhand is one word for it. Most of the other words I can think of aren't fit for publication!
Get a good nights sleep. Tomorrow is another day!

 

[Ash148]

Ann and others, this is awful. I thought the UK system was so much better than ours here in Ireland but it seems it can be just as Orwellian. Makes you wonder whether our loved ones or the bureaucrats are the demented ones.

 

[Ann Mac]

Morning

Awwww - cheers for the flowers and wne Celia xxx

Reading everyone elses posts, I'm really disgusted by how many LA's have now pulled this stunt. Its absolutely incredible that they have been able to basically remove the availability and keep it quiet - especially at a time whe we have politicians spouting off about how 'dementia aware' they are and how more is going to be done to help I contacted a local organisation which is basically a support service for all carers - they were not aware of this. They managed to get hold of the Alzeheimers Societies local 'rep' (not sure if that's the right title) - who was also completely unaware that this was the case - I'll hopefully be speaking to her today. The councillor has told me that he will be tracking down the person 'responsible' for adult services for the elderly to 'investigate' this matter and will be getting back to me today or tomorrow. The local MP will be contacting me today - spoke to the secretary there yesterday, who was utterly disgusted and assured me that the MP will want to be involved - and the local press, who funnily enough were having trouble getting hold of anyone wo give give them any information at Adult services yesterday, will also hopefully be getting back in touch. I've had contact with BBC Wales and Radio Wales in the past, so will be contacting them today too, and seeing what I can stir up there. Its such a big issue, and one that has been already fully implemented by the LA, so I have no idea if there is actually anything that can be done - but I am going to try. And yep, I could really do without this, Celia and its wrong to have to do it, but I feel I have to try.

Yesterday was a bit on the tough side not only because of the respite issue. OH was on a 12 hour shift and I had the second of 3 treatments at the hospital that will hopefully decrease the pain in my hip. I was warned that the aftereffects in terms of pain would increase with each treament and that I wouldn't see the full improvement for about 6 - 8 weeks. First session I was a bit uncomfortable afterwards, last night it was really, really sore and I was trying to follow the instructions to 'rest' - unfortunately Mil was unable to see the need for this, and we had an evening of lovely delusions that made the idea of rest an absolute joke She started when I picked her up, going into a flat spin panic 5 minutes into the car journey - she was sure that my son had been to day care and left a note on the table in the canteen where she works and that she must give me this note, but she had left it 'back there in work'. And she wanted me to turn round and go back so she could look for it. She was livid when I told her not to worry, I didn't have time to go back now but she could pick it up tomorrow - it just wasn't 'good enough' she insisted and I must go back NOW! Back home, the delusions continued - she had to go home to help decorate her street for that 'thing', where had she put that box with the mechanical things in it? - and she also had incredibly foul flatulance, which for once she was actually aware of. She kept going up to the loo 'to trump' she said - and I would hear the flush, so just in case I was asking her to use the hand gel - but she would flump down on the sofa and refuse to come to me, or even pick up the gel herself so I was up and down taking it to her and making her use it. About 8pm, she leapt up and headed for the kitchen - she had left the kettle on the gas, she said. I told her we didn't have gas and asked her to sit down, I really didn't want to be having to get up yet again to have to show her all was safe, but she nagged and chunnered about it being my fault that the pot would have no bottom left and how I was going to be responsible for letting the house burn down. In the end, up I got and showed her our ELECTRIC cooker, switched off and nothing on the hob - and she still wouldn't believe me, firstly insisting that there was another kitchen and then saying 'OH, I know where that other cooker is' - and opening the fridge to look in there! How could she think that there was a cooker hidden in a fridge??? Not quite as bizarre as Gmama's Mil, thinking she was dead (bless her!) - but pretty close.

Just before 9 she began to sundown, but thankfully, OH was back soon after and he talked her into meds and bed.

Right better roll up my sleeves and prepare for battle again - firstly, in getting youngest and then Mil out of their beds, and then with Numpties in the council!

 

[Spamar]

Good morning, hope the sleeves are rolled and you are ready for battle!
Fortunately OH is ok nothing untoward, unless you count a whole bar of li..dt chocolate. I dislike dark chocolate, but he loves it!

My annoyance is with the vascular clinic. It's a year after his ops and checkup time. I had to cancel first one,
OH was not very well. I had to cancel second one, I wasn't very well. Third appt came, at the main hospital instead of our local cottage hospital, 16:30 on Friday. OK, just take him out of daycare early. Yesterday, new appt for 12:20 Friday! Phoned to complain. Apparently an afternoon clinic has been changed to a morning one and there are no vacancies until 27th March. I would have put it off once again, but his foot has gone very cold again and I want to know what's what!
That means he will have to miss Friday daycare, an hour in the morning and the same in the afternoon is just not worth it. Also the timing means we shall gave to get dinner out. As you know, meals come at a certain time! Appts are usually at the local hospital as well. 12:20 there would be no problem, that's where daycare is held!

Ann, hope you have a good productive day and get things moving and people aware!

 

[RedLou]

Wow, Ann! Just wow! They should make an applause emocion for TP.

 

[Onlyme]

Perhaps we need another evote thing.

It's all very well expecting carers to almost kill themselves (it's not, sarcasm) but to stop respite by stealth is shocking. I will be buttonholing the manager at Mum's to see if our council has done the same.

 

[sinkhole]

Perhaps if everyone here were to write to their LA asking them to confirm their current policy in regard to respite care, we would have more information to then approach the Press, MPs etc. with and it could have some real impact.

Also, don't forget if you get ignored by these people, we have the Freedom of Information Act to help us.