Follow
Share
Read More
This question has been closed for answers. Ask a New Question.
Find Care & Housing
1 2 3
Jude I can't offer you help :~( What I can offer is my thoughts and my empathy.
Being in England too I know sadly too well the garbage you've been getting.
I was told today (I asked Nov 20th for an assessment) that after a "multidisiplinary" meeting it was decided that I don't need psychiatric support. Nov 11th 2014 diagnosed with MPD/DID, was seeing a psychiatrist and the specialists advice was that given the level/extent of trauma I should be on 6x more the support I was getting, but as I was managing with what I was getting don't change anything. Feb 4th 2015 "timed out" with psychiatrist, so end of support 50 mins 1x a month!
No one has seen me/spoken to me about my issues since Feb 4th 2015 so how they reached their conclusion is baffling.
My Dr. told them I now have dementia, response "Oh well, she'll soon forget the trauma then won't she? There's no point in getting her into support for such a short time." Now I don't know if they've a direct line to the book of life, because no medical professional I've spoken too can tell me how fast this could/will progress. A Social Worker though has written me off in a very short time!
Back to you, keeping everything crossed for you. If you want to talk to someone outside who won't give you platitudes and walks a similar path message me privately.
Take as much care of YOU as you can
Helpful Answer (2)
Report

Well well well they have come back to me with an alternative suggestion. I can have 'in house care' they will send carers in to look after Mum at home.....breathes deeply erm thats the whole point.... there won't be a home. Ah no but that will be the situation next time you want respite.

So if I want to go away for a weeks respite the ONLY care option I am being offered (which Mum will have to pay for is 168 hours home care using 4 carers to cover the round the clock care and it will cost Mum £18.50 an hour so thats £3108 (4514.99 $) plus they don't shop, clean, do laundry. They will cook (oh thats good of them)

On the face of it I can see why they charge that much but is does strike a chord when that is almost exactly the same kind of money that the govt consider I am worth for caring for Mum for the entire year
Helpful Answer (4)
Report

Do you not have the option of private pay respite? Most nursing homes here keep a bed or two open for that, it is what we used for our respite stay and was a whole lot more practical than paying for in home care. Of course the spaces are usually booked well in advance.
Helpful Answer (2)
Report

Apparently (and it will become worse very soon) care homes in our area don't keep beds available for respite. We had a home that ONLY had respite and rehab but they are closing it - damned intelligent move given the baby boomers are just to explode on the care needs scene
Helpful Answer (4)
Report

Oh Jude--Oh my. You were so helpful to me a month or so ago. I wish I could be helpful to you. Just know as you somehow get through this frustrating, unbelievable, unfair, and unjust mess, (and you will!) that you have a lot of people rooting for you. I think we need a sort of miracle for you.
Helpful Answer (4)
Report

People I will be fine - I just needed to vent in a big way. The road for carers is made so much harder by the people in power and that is what absolutely P155E5 me off.
Helpful Answer (5)
Report

Do you know what - I will actually be glad when I don't have to deal with Social Services any more. UK here so bear that in mind. Today I rang to arrange a seamless transition between this house and new apartment. yes we will need a new assessment, yes we also need a carers assessment, no we haven't got a date for moving but apart from all this can I have a bathing assessment please for my Mum

There is a long waiting list. A long waiting list huh....she's 93 and with very limited mobility. Well that means she could be seen sooner. So what are we talking roughly? 6 months. So 6 months without a bath or shower then ?
You do realise that very elderly people with dementia are a high risk when you move them don't you? Well sorry we are busy.

I can't even speak I am so angry. Service? my backside? total lack of service.

So then I asked well what about rails - oh we can send an assessor out for that in about 3 weeks - so not mobile for 3 weeks then but thats better. Is this the same assessor as the bath assessor? yes but she won't be doing a bathing assessment at the same time........GIVE ME STRENGTH. All I want is advice - I don't want them to provide anything. Just as well because there is over a year long wait for a bath lift - I was a bit unpleasant Im afraid. I just said she will probably be dead by then but I imagine that would suit well wouldn't it and put the phone down.

How is that support supposed to actually HELP caregivers?
Helpful Answer (3)
Report

It's disgraceful! Yes, with the near (or are we already in it) explosion of baby boomers who are going to need respite and all sorts of other care services, one would think that respite exclusive homes would be popping up all over the place, private homes even, as there is obviously great monies to be made doing so! And to hear those services being cut? It make No Sense! I'm sure you are pulling your hair out at this point! I guess I'd probably should get on a list somewhere, if I might want a vacation in the far away future! I'm sorry you are having all sorts of problems! I wish I could help in some way, if only you lived a little closer! HUGS!!!
Helpful Answer (1)
Report

I think that if anything happens to sorry WHEN anything happens to Mum I will offer my services out as a live in respite carer - I would only have to do about 1 month a year to make some serious money at it at the rates we were quoted. Crazy world, crazy days. I know my stress levels are up daughter came today with a half hour pamper session with elemis - she was giving me an hour off for good behaviour. Got down there had an immediate allergic reaction to the first product I now look as though I have been in the sun all day (and that was the products that are allegedly used on babies!!!!
Helpful Answer (1)
Report

I am sat here wondering how much more stress my heart can take. Just spent the whole night from 12 until gone 5 at the hospital. In the end I overruled Mum because I was absolutely certain I was seeing cellulitis (not that I have one iota of medical training in the doctor type sense) and took her to Accident and Emergency. Well that was interesting. Apparently a lot of students have just finished their exams so were out on the lash last night (UK expression meaning getting drunk) Of course they ended up in the Emergency department and of course had to be in the bed next to Mum (albeit with curtains drawn) throwing up the said alcohol using language that quite frankly I don't want to hear and certainly KNOW mum doesn't want to hear.

Security were called (I thought they might eject ME!!!) My god I am disgusted they have to be even treated. If you choose to get so blind drunk that you CANNOT get up off the middle of the road then I am sorry you deserve to get run over (preferably by something very heavy like a steamroller....that way you won't do it again and cost the government even more money.)

I personally think we should fine them - awwwww I hear them say the poor students don't have money - well they had enough to get blind drunk - rant over!! We are home now with meds and mum is confined to bed with legs raised for 24 hours and I am enjoying a little peace.
Helpful Answer (2)
Report

It is hard when in A&E for non self inflicted problems to have to wait with people who are obnoxious because they are drunk.
Glad Mum is home safely, sorry you've had this as an extra to deal with :~(
Helpful Answer (2)
Report

Well despite them telling me I would probably be bringing her back in of IV drip because it was unlikely I would get the inflammation down well enough to stop it taking hold I have found that half hour cold compresses and the antibiotics seem to be working the inflammation is almost gone and her leg isn't looking a ghastly bright red any more. I am totally knackered - what is this sleep you all talk about!!! but she is on the mend - I hope
Helpful Answer (1)
Report

While I think about it thank you all once again for being my rock - you just don't know how much it means to me xxxxxxxx
Helpful Answer (1)
Report

Oh and just to amuse you

I clearly had a bowl of stupid for breakfast this morning. After I had washed and creamed mums body I realised that I had inadvertently taken off most of the line the docs drew round the cellulitis - its the only way I have of knowing whether it is getting better or not and they said even when it start to get better keep it marked just in case. So off I went, got the marker and marked Mums leg again ....only to look down and realise it was a permanent marker - oops!
Helpful Answer (1)
Report

Well you won't have to worry about washing it off again ;P
Helpful Answer (2)
Report

Glad to read your Mum's on the mend. Hope you get quality rest soon.
Helpful Answer (3)
Report

Nothing wrong with a permanent marker. Very enduring and it will make you smile! :-)
Helpful Answer (2)
Report

Lol you lot xxxxx
Helpful Answer (2)
Report

Jude, it's always amazing to me how sometimes we just tip over into the realm of "did i really just do that?"

OTOH, I really think you and CountryMouse should get together and start a UK carer's respite house.
Helpful Answer (4)
Report

You can't do everything. For everyone. Someone is bound to be unhappy. SO BE IT! You do your best, and if your mom is going to make a stink please read the helpful advice offered here by others. Your mom can scream and shout, but you are the one with the burden, and you have the power. You can't do everything all the time, trying to make poor old mom's life happy. Do what you have to do. God bless.
Helpful Answer (3)
Report

Lassie--right on! We can do triple somersaults trying to please our mothers and even that is not enough. I have been making huge progress, frequently reminding myself that I am doing a truly great job helping my mother, but I am also entitled to space, peace and freedom. I am not responsible for her happiness--just my own. That doesn't mean I am unkind or anything else; just protecting myself from frequent meanness and verbal abuse. If I don't protect myself, no one else will.
Helpful Answer (0)
Report

Right I am not going to be guilty of not completing the circle so here is my final update:

Surprisingly I took your wonderful advice (sort of) mixed it up a bit and came up with if you don't put Mum in respite when we move then I will be forced to bring her to the town hall, leave her there in her wheelchair and you can be certain I will call the press first.

That very afternoon I managed to get 2 weeks respite for Mum and on the right day - they tried to offer it me for after mum moved but no dice I was not playing that game. I just lost my temper and decided enough was enough - I take enough off mother without them chipping in their two cents worth.

So now I have a date and I have respite and now all I have to do is arrange with 51 yes 51 different people to let them know we have a change of address - the first 15 have all asked to speak to her to confirm it is ok for me to speak on her behalf - either that or I have to send in a POA copy for each of them - I refuse to play that game either. So calls 1-3 were fine. She told them her name and her date of birth all well and good and that yes I could speak for her. Then we started getting 'ornery.

Call 4 - the caller didn't speak particularly good English and is a Filipino so she also speaks very quickly, Mother is immediately rattled and I can see the face change that tells me this is not going to be good. her responses went along the lines of:
Hello? Hello?
Speak English
Well its not my English
Speak slower
Cant hear you
You've asked me that
Ive told you that
Jude who is this stupid woman she keeps repeating herself

So I apologise and the woman decides she doesn't need to ask the questions Call4 sorted
Now I thought the next call was going to be really tough but it was a man so she was lovely - to quote - Oh he's a nice doctor (didn't tell her he wasn't the doctor)
Calls 6-12 went fine then boredom set in.
She told the next person she was Hiawatha - lets not even go there
Call 14 she said her age was private and she ought to know better than to ask
Call 15 she point blank refused to say anything to them other than hello

I can see this is not going to be quite as simplistic as I thought but hey ho we are moving and we now have a date for the move

Oh and because I know she will look Happy Birthday Stacey xxxx
Helpful Answer (3)
Report

Well done Jude!!!! Sorry it has to be sooooo hard but well done and to Mum too!
Helpful Answer (1)
Report

After the move: "To everyone who's hit their limit,
It's not over yet!
To everyone who thinks they're finished,
It's not over yet!

Song from: For King & Country

Keep on trying, from grandma to grandma.
Hugs for Jude today!
Helpful Answer (1)
Report

Hugs for all who care, should definitely be
one of our 5 a day!
Helpful Answer (1)
Report

LucyCW, Hugs for you too!
I am not sure what the 5 a day references. Did you need 5 hugs?
Helpful Answer (0)
Report

:-) in UK we're advised to "eat 5 a day" as in 5 fruit a day.
Helpful Answer (2)
Report

or veg Lucy xxx have to say I prefer the fruit version

PS for anyone who hasty heard of this they don't mean
1 strawberry pavlova; 1 banana cheesecake; 1 apple pie; 1 pumpkin pie and 1 black forest gateau with black cherries!!!!!

UNFORTUNATELY
Helpful Answer (2)
Report

mmm veg too :~) love the fruit idea PheonixDaughter, strawberry pavlova and a hug ~ a little glimpse of heaven lol
Helpful Answer (1)
Report

Are you seriously trying to tell me my slice of apple pie doesn't count as a serving of fruit? LOL
Helpful Answer (2)
Report

1 2 3
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter