We Dont Stand a Chance

[steve58]

We went to a meeting with Moms Psychiatrist yesterday. The Nurse looking after Mom was also there.
The Psychaitrist knows how much we want Mom home . Her Vascular Dementia is quite advanced but she knows and still loves us being with her. The Nurse said it would be impossible for two people to look after her. We had no one to speak for us (our advocate couldnt make it, although she is not really helping. Her collegue is Moms advocate who strongly believes Mom is happy and would be fine in a care home. No one seems to understand just how much we are willing to put up with all the trials and tribulations that would happen if Mom did come home. We dont have anyone on our side as they all seem to think a Home is the best place for mom. I admit she has great needs. She is doubly incontinent and cant really walk as she had a fractured hip that never healed properly. The hospital were not Dementia aware and treated her very badly. She has never been the same since. Also she has had two massive seizures in the Psychaitric Hospital which I think caused further damage. They dont have an in-house Doctor so it was a bad affair. They keep saying about a home is the best place for her and we will be able to just have the best times or quality times as they put it. NONE of them seem to grasp that we want her home while it is still possible. We have no power over what they say and we just are so helpless and at the stage where we have given in and its making us so sad and ill.
The Psychaitrist said that she will arrange a Best Interest meeting but that is going to be a waste of time as we have no one on our side. The CPN and Social Worker thinks its for the best, and from what we gather, so does everyone else. They are not taking into account that we WANT to look after her and KNOW all the dangers and toll it would take on us. But we love her and want her home but have no power. We dont know when the Best interest meeting will take place but we know its more or less a waste of time as they have already made up their minds. Its so cruel. Why cant they see that sometimes they get it wrong? They said we wouldnt have a life, but they know she is our life.
She did come home from the medical hospital but it was only for a week as she was discharged in such a terrible state. We didnt stand a chance. Its all so wrong. We dont have the fight in us anymore. No matter what we say or do, they are adament that she goes into a home. We know she is not at that stage and we know she misses us being with her all the time. Its a cruel disease and I think the people who make the decisions can be so heartless and they should really question their decisions more. What if it was one of their loved ones? I wonder what they would do. We just dont have any support from anyone now.

 

[Vonny]

Steve, I'm sorry things aren't looking good for you.

I actually agree that you probably couldn't manage with just the two of you because you'd both be on your knees, but the two of you and a decent care package is a different story.

Did you raise the idea of getting extra care in? If not, is that something you could raise at the Best of Interests meeting? Although my mum's GP, DN SW and CPN all said mum should really be in a home, they all rallied around to get a really good care package in place which took some of the pressure off the family.

However, each case is different just as each sufferer is different. I do think, though, that you'd stand more chance of getting your mum home if you had that vital care package. Could you discuss offline with your SW prior to the BOI meeting?

Vonny xx

 

[danny]

Hi Steve,people can and are nursed/cared for at home with very dependant needs,however,it needs lots of planning and a very competent team of carers to work with you.It is not an easy task for any family to undertake.You will need an array of equipment including a hospital bed,pressure relieving matresses,hoist etc etc.You will need the support of the district nurse team to advise on continence care etc and a very understanding GP.Sooner than later you will need some form of respite break ie sitters etc.This type of care package can be set up but everyone needs to talk it through,maybe at the Best Interest meeting,you also may be entitled to fully funded care!!!!You need to think about all of this very,very,carefully,your lives will change drastically.Sometimes,a care home really is for the best.Hope things work out for you,regards,Angela.

 

[lesmisralbles]

Want your Mum at home

OK.
Said I was leaving TP.
****** that, sounds like "udder" that, udder as in a cow.

Get the district nurses on your side, get mums doctor on your side.

PROVE, you can look after mum
I looked after Ron.
I was on my own.
He got the best care, the love,the attention he could have not received anywhere else. And he was happy XX loved untill the end, and beyond XXX

FIGHT.

I am here if needed.
Barb X

PS
Do not let SS tell you they cannot, they can.
Stand your ground.
You are entitled to help at home.
Barb X
As for two of you, well thats good, there was only one of me.
I did it.
So can you.

 

[foxhound]

The other posts have said pretty well everything in the way of practical advice. Getting your MP involved might help, but my guess is that they will sympathetic but not want to override the collective weight of pro opinion. Worth a try, though?

Otherwise, just to say all my sympathy in a horrible situation. One possibility - if you don't win at this stage, go all out to make sure the best home possible is chosen, see if she stabilises and then try to have things reviewed and her brought home then.

Good luck.

 

[Padraig]

Who's in control?

Steve,
Reading your post gets me mad. When will these people learn? What gives them the right to rule that you could not cope. The peace of mind of both the patience and family members should be paramount by respecting their wishes.
There was a time they convinced me I could not care for my wife at home and followed the professionals advice. Though I attended my wife every day at the NH, the expense to me of keeping her there proved a waste of money. We were both depressed, which resulted in both our healths being affected.
By the time I decided to take her home I was in such a rage that I was not prepared to let anyone stand in my way. I'd had enough difficulty restraining myself when it came to dealing with some members of staff in the 'Home'.
Yes, I was apprehensive about the action I took to care for her at home. I can still recall venting my feelings to our daughter; "I've had enough of all the so called system. I'm looking after your Mum on my own and I don't want any interference."
It took just the one night of having her home to realize that I had done the right thing by the both of us.
One can never know their capabilities without giving it a try.
If asked to describe Alzheimer's, I'd say it's a fearful disease.

 

[Norrms]

Hiya Steve

My heart goes out to you and your family, i know one of my biggest fears is beng away from my darling family and for them to have no say in the matter frightens me to death!! I hope and pray tyou can get this resolved in your favour and show them that sometoimes, LOVE is enough, best wishes, Norrms and family xxxxxxxx

 

[Jaye]

It often feels like you are not listened too, but the professionals must have their reasons why they feel that going into a residential/nursing setting is in your mum's best interests. Have you had anything in writing as to what those reasons are?

If you feel that it is in your mum's best interests that she comes to live with you, then I suggest that you need to put together your own list of reasons as to why this is. Not just that it is because you want her to. Of course one big reason could be that she would be cared for by people she knows.

A good start would be to go through your mother's current care plan and think how you could show the professionals that you can care for her appropriately in you home setting. You would also need to think about her future needs and how you could accommodate those.

Examples might be: Can a wheelchair be used in your home (ramps/wide enough doorways/everything on one floor)? Do you have space for all the extra equipment your mother will need? Do you have sit down shower/bathing facilities with room for assistants to work? Do you have experience/training of toiletting an incontinent immobile person every few hours (use of hoist)? How would your mother's care fit in with your current lifestyle? etc etc

If you can prove that you can do everything as well as a care home can, and more, then you would present a good case for your mother to make her home with yourselves.

Alternatively, you may choose to make sure that wherever she is, she still knows she is loved and can enjoy having you spend your time with her.

Good luck with the meeting, from Jaye

 

[Margaret W]

Whilst I fully appreciate everybody's sensible suggestions that it is going to be difficult, and all the extra equipment that is needed, and possibly training in its use, I do think it is extremely wrong that when a family is ready and willing to look after their mom that they are told they can't. In this day and age it is rare to find such a family, and they should be encouraged and supported.

Our care homes are already choc-a-block and anything to relieve the pressure on them is to be welcomed. Leave them from people whose relatives can't/don't want to cope with them at home.

I know of several people who cared for severely ill people at home, and whilst I don't know how they did it, well they did. They had beds and hoists and shower rooms, and lots of assistance, and it was cheaper than that person being in a care home, and gave both the patient and the family a sense of belonging and love. Ain't that what it's all about?

I hope you win your case Steve. You sound a lovely person, and one to be admired - and your views respected.

Love

Margaret

 

[steve58]

Thank you

Thank You for all your supportive and informative replies to my post. You are all such amazingly kind and understanding people. As it stands , we have had no further news/advancement on Moms position. Unfortunately, as the Psychaitric Hospital is so short staffed, Moms leg has become a lot more painful as she is not getting the physio we were told that she would need when she fractured her hip. They are just giving her the usual painkillers and not treating the leg itself. We did manage to get the Consultant who originally diagnosed Moms Vascular Dementia to see her at the Hospital and treat her for her seizures which were becoming more common. He has raised the dose of the anti-seizure meds quite high which just goes to show the neglect of the medical/Psychaitric profession Its so hard and such a battle to get care when needed and we are worn to the ground trying to fight every step of the way. Obstacles are put in place everytime we try. We have written a letter to the Consultant looking after Mom to ask if she can be looked after at home on compassionate grounds. Due to the nature of the disease we know how time is limited and we want her to be cared for by the people who know and love her. We know she would want that. We were told that carers could only come in 4 times a day and that we would be left all night without help to change Mom. My Aunt has written a letter asking the Consultant if she would be willing to let her come into the Hospital to see if Mom would let her change her. We also stated that we looked after her for 4 months when the onset began and before she was sent to Hospital and was Diagnosed with Vascular Dementia. We had no carers and my Aunt had to change Mom then. It was only a year ago and the Dementia has been rapid so things have naturally changed. Also with Moms fractured hip the care needed is greater. BUT, we still want her home where we feel she belongs. She has a lot of lucid moments when we visit her and she tells us how scared and lonely she is and wants to come home.Even though we know to her, home means being with us. WE know her best of all, and we know , in spite of what is said, she is lonely, very, very scared and desperate to be with us. Unfortunately because the rehab hospital was not dementia aware, she was treated very badly and went rapidly downhill. So when she eventually did come home, she was in such a terrible state and we did not stand a chance of looking after her needs. Every Doctor who came in that week was puzzled by her torment. It was a nightmare. She was inconsolable. This is when she was sent into the Psychiatric Ward for assessment. Now, we dont have the Social Worker, CPN or even Moms Advocate on our side. When they have visited her in the Hospital, she puts on a brave face and they are really fooled thinking that she is happy. She is not! She is terrified and the other night she said she was trying to work out what has happened to her and how can she get her life back?. The Consultant has left it being that a best interest meeting with the above mentioned be held sometime in the near future. We dont stand a chance. What if we outright refuse that Mom should be in a Nursing Home? How bad could things get. Our Advocate advised us against that and said things could turn nasty. Unfortunately she is very close with Moms Advocate who has only visited Mom a few times and really believes she is happy and enjoys watching television. Mom doesnt even understand the Television!. In other words, we seem to be fighting a losing battle. The letter is really a last ditch attempt to try and get Mom home but we have little hope. We all know how cruel all forms of Dementia is and how precious time with our loved ones is. Apart from the changing in the middle of the night, we cant see how we could not give her the care and love she needs. The Nurse in charge of Mom was at the meeting and said He couldnt do it and he would have no time to himself. We were so worn out at the meeting otherwise we should have said "No, but then you dont love her". So, as it stands, we are waiting to hear about the best of interest meeting where everyone will be saying she should go into a home, including the Advocates. We are going to be like Lambs to the Slaughter. No one is prepared to listen to us and we are not at our best as most of the fight has been knocked out of us. BUT , when it comes to it, we want her home and know she would get the care needed and just as importantly care given by the people who love her. To us she is not just a patient with Dementia, she is a person who is greatly loved and deserves the respect and dignity she has been denied over the past year. I wont go into detail, but I am sure many of you have had similar experiences.
We dont know what to do now. Its a given that the so called experts want her in a home. We, who love her, know being with us is what Mom would want. Various people in Authority said we would become worn out and ill looking after her. Well, we have become worn out and ill fighting to get her home. These so called experts just see mom as another Dementia Patient who just should be bundled off into a home. Im sorry if I havent been very clear in my Post, Im just so upset and angry that we seem to have no say or control over the future of my Mom
Once again , you are all amazing and caring people and you are a lifeline to us. Thanks to all of you

Steve

 

[mowood]

Hello Steve,
I've just picked up your thread. Has your mum been assessed for NHS fully funded continuing care? I believe that if somone is terminally ill this process can be 'fast-tracked'. If your mum does qualify for this funding the PCT should be able to put a care package together to enable you to look after your mum in your home.
I'm really not an expert on this but my mum does get the funding and we have a care package; 4 nights where a carer comes in to look after mum throughout the night and then we have another carer who comes in 3 afternoons for 4 hours each time. We have also been provided with a proper hospital bed and a commode and incontinence pads are delivered regularly.
I think it would be worth asking about.
Even with all this support it's very hard looking after my mum and I'm often exhausted. Despite this I don't feel as ground down as I did when she was in a 'care home' and I was watching her being neglected.
Good luck with this. I hope you get the outcome you want.

Maureen

 

[steve58]

Thanks

Hi Maureen

Our Advocate said the continuing care was being looked into but would take a very long time.
I know exactly what you mean about being ground down more watching your Mom being neglected in the care home than being looked after at home. That is how we feel, seeing Mom treated so badly in Hospital and the lack of compassion and lack of dignity she has. We have so many bad experiences fighting for her rights its worn us down to the ground. We know she would be better at home but for some reason non of the "team" think it is in Moms best interest. They said the double incontinence would be a major problem. My Aunt would be able to do this for her. Also they said she needs a routine and enjoys the company of others. In her lucid moments she tells us how scared she is of the other people and wants to come home. Its a long hard battle and when the best interest meeting comes, it will only be my Aunt and myself who think its in Moms best interest to spend her days at home. Everyone else , the CPN, Social Worker, Psychaiatrist, even our own Advocates are against the idea. Its so difficult when we leave her in the hospital after visiting is over. She is wheeled back into the lounge and sat in a chair staring blankly .
That is what would happen in a home no matter what they say, and to us thats not in her best interest. We dont know what to do to get her home now.
Thanks for your support
WIth very best wishes
Steve

 

[Solaris]

Steve, this link might be useful: http://www.hopeforhome.org.uk/about. I haven't contacted the organisation myself, but it's encouraging to read accounts of other people who have successfully cared for a dementia sufferer at home, and maybe they might have advice for you.

We took my mum home after 8 months in care. The nursing home staff supported the idea as they knew how distressed she got by disturbance from the other EMI patients, and thought she'd be more settled at home. The consultant was neutral on the idea but willing to let us try.

We originally put mum into nursing care as she was mobile but falling, and my dad couldn't cope when on his own. As the dementia progressed, her mobility went and it became possible once more to care for her at home. She lives with my dad, and I "take over" in the evenings and at weekends. She is doubly incontinent, but we get a pair of carers in 4 times a day to wash and toilet her, and get her into and out of bed. She isn't toileted during the night but wears a high-capacity all-in-one pad, gets a good night's sleep and her skin condition is fine. She isn't bathed or showered due to practical reasons with the design of our bathroom, but gets a full body-wash every morning, and her general hygiene is very good, and better, infact, than when she was in the home.

She is on NHS continuing care, so the carers, hoist, commode etc are paid for.

She has been back with us a few months now, and it is working out fine. Of course, it's hard work for us, but a lot less stressful than worrying about how she's getting on in the home while we're not with her! More importantly, my mum is more settled and better cared for. Naturally, every case is different and only you can judge if it could work out for your mum and your family, but don't be deterred by professionals or friends who doubt the feasibility of the idea based on their opinion of your capacity to care.

Don't give up!

 

[steve58]

Desperate for advice and help

Firstly I want to thank you all for your amazing support. It never ceases to amaze me how supportive and generous you all are to fellow carers.
Things have changed since my last post , and its been quite unexpected. Out of desperation I wrote to the Consultant after the meeting, giving the full history of the last 12 months as I dont think anyone had grasped the full situation even though Moms notes were all there to see!
My situation is similar to solaris in many ways. There are two of us (my Aunt and myself) to care for Mom.
I left the letter for the Consultant on Tues and by Thurs when we went to visit Mom we had a message from the Consultant passed on to us saying she is willing to give us a trial with Mom coming home. I wrote straight from the heart of all the suffering mom has had in the various hospitals etc and due to the evil nature of the disease we know that time is limited. The Ward Clerk said the main concern was how we were going to cope with the changing in the middle of the night and wants us to submit a plan for the rota we would intend to use so that none of us becomes ill and above all Mom wont suffer. We were told Mom had no problem with eating although it takes about an hour for her to eat a meal as she loves to talk non-stop, her liquid intake also is no problem and she takes her medication which is all in liquid form without any problem. The main problem is the double incontinence. We would have carers come in four times a day but the Consultant is concerned how we would cope with Mom after the last visit. She wants us to submit a plan/rota by Monday as she is going away on the Tuesday. This is where we are completely stuck. Apparently Mom needs changing twice in the early hours, about 2am and 4 or 5 am and the Consultant wants to know how we can achieve this without making ourselves ill and not having sleep. This is a problem we havent faced before and not sure how to make it successful. She wants us to take it in turns to look after mom in the small hours but how would we go about this. I know it may sound a daft question but its very serious to her and we dont know how we could do this, ie: If one of us is on duty so to speak for a couple of days that person would have to FORCE themselves to sleep the day after???? This must sound a really incoherent post but we are absolutely shocked in the first place that she is going to allow mom home and also we were totally unprepared for this even though we have fought all the way. How could we make a success of this. We desperately dont want it to fail as Mom needs us so much as we do her. We have an air mattress for bed sores and a air cushion for the chair. But are totally clueless as to what else we would need. Like Solaris we dont have a walk in shower and mom is too frail to get into the bath. I remember once a social worker said so what, in the old days no one had showers and had to have a strip wash or blanket wash. I hope they realise that. Moms in a very advanced stage of her Vascular Dementia but thank god she still knows us and loves being with us. We want all three of us to have some time together. Mom doesnt speak much sense but her eyes light up when she is with us and we all laugh and joke about absolutely nothing. The love hasnt gone and she knows that.
We just dont know how to go about submitting a rota that would be passable and feasable not having had to face the situation before. When Mom came home briefly , discharged from the medical side, she was only home a week and we were both up all night with her and at our wits end. The hospital had let seizures go on for too long and they caused such further damage to her so we didnt stand a chance then. Also with her frailty the Consultant wants to know how we would get her into bed. She doesnt need a hoist, although we have one on loan but we dont quite understand what she meant. I think basically she wants it to succeed for us and wants us to be aware of the pitfalls with the lack of sleep if we didnt have a rota. We realise we have to be as strong as possible as Mom will need 24 hour care , but we just dont know the best way to get around the problem of night time when she will need changing twice and that it wont affect our health.
We would be so grateful for any help or tips anyone can offer us
We believe a lot of it will be trial and error but we have got to submit something that sounds feasible and something that would be successful

Thanks to all of you amazing people

Steve

 

[jenniferpa]

I'm not sure what the rationale is for a change being needed at 2am and 4am. A middle of the night change, yes, quite possibly, but 2? Also, is she being changed this frequently in hospital (I doubt it, frankly). Anyway, parents do this all the time, and while changing a baby is considerably less labour intensive than and adult, they don't necessarily breakdown.

As to shifts - my daughter works very variable hours (anywhere from a start time of 5 am to and end time of 11:30 pm) and it really is a case of making up your mind to go to sleep. The reality is, though, that you could either have someone staying up to do the 2 am change and then going to bed while the other person took the next change, or you could have one person who took primary responsibility throughout the night while having a nap (or an extended nap, in fact) during the day, and I think that could work because the person during the night changes doesn't actually have to stay awake from change to change.

With regard to bed baths, someone actually posted on this forum that they had got an inflatable bath that goes onto the bed - I can't remember who but I'll see if I can find the link.

This is the thread http://forum.alzheimers.org.uk/showthread.php?t=19674&highlight=inflatable+bath

 

[steve58]

Thank you

Thank you Jennifer for your reply. I cant understand the rationale behind it either and we also couldnt understand the insistence that Mom has to be changed twice in the night. The Consultant obviously knows how serious we are about giving the right care but with all that mom has been through, broken hip, seizures that were allowed to go on for longer than was safe (they dont have an in-house Dr) it seems strange that she is insisting that we submit a plan for changing her twice in the night. I too doubt that they do this. I think she must want to test us to see how resourceful we are. Your ideas are most appreciated. It is a very good suggestion that we BOTH do a early morning change amdist naps. I dont see how she could argue with that
We so desperately want it all to go right and not fail. Mom has been treated so badly for a whole year and we want her remaining days to be with us. We are still reeling from the shock that she has agreed after being so adament about mom having to go into a care home that we havent even managed to plan anything ie bedding, diet etc let alone a rota so your help is truly appreciated
thank you Jennifer
Steve

 

[JPG1]

Well done to you for getting the Con to do a bit of lateral thinking and to give you the one chance you and your Mum need.

It makes me angry that a Consultant can ‘demand’ a response from you by Monday because she is going away on Tuesday!! And, I hate to say it, but the Ward Clerk should not be involved in this at all! A Ward Clerk is an admin role – not a health care role, so unless he/she was merely passing on a message, then don’t concentrate on the Ward Clerk.

The Consultant is supposed to advise you. The Consultant should be prescribing – that’s what they do normally, isn’t it – the required schedule for you. Then it’s up to you to try it and make it work. It takes a while to get used to ‘shift work’ – about 3 months normally, before your own body clock adjusts to it. And even years later, your own body-clock may not have quite accepted it all! (But don’t tell the Consultant that!)

Are you supposed to set your alarm clock for the required hours? Didn’t the Con explain that one?

Or you could just alternate – that would be easiest. Or one night on; one night off. Or two nights on; two nights off. Most shift-working is based around ‘half-a-week on; half-a-week off’, or used to be when I was on shift-working. So that your own body-needs can catch up. But ... ... it’s all down to personal preference. I’d ask the Con what she would recommend as the ‘ideal schedule’ and say you’ll work to it.

How many people dealing with dementia are ‘required to submit a schedule’ as to how they would deal with night-time incontinence? Never heard of that one before, so you’re perhaps the first.

Ask for that assessment for fully-funded NHS Continuing Healthcare to be speeded up – it should not, and does not, take a long time. Ask again for it to put through, because chances are it hasn’t been processed yet.

Good luck!

 

[Winnie Kjaer]

Hello Steve,
I am absolutely appaled at reading your thread, all this about rotas and night changing sounds totally unresonable. I care for my husband who is totally dependable 24/7 (he is paralysed completely on left side) and I have carer's in to assist me just 2 hours a day. One hour in the morning, and 1/2 hour afternoon and bedtime. My husband does not get changed in between, and does not need to be. He wears maxi slip pads and a convene at night with a night bag. But if he gets a bit sore from the sheath he only wears a pad with an extra liner and is perfectly alright with that too. My husbands bottom is as clear as a baby's bottom and he has never had a bed sore. I have 3 hours a week free respite through carers link and I pay for a further 2 1/2 hours most weeks plus a few extra hours once a month for a sitting service to enable me to go swimming and attend a support group. I manage perfectly well on this support and I am sure you will once you have got yourself a routine. OT should arrange for the equipment required. I.E. commode, electric bed, airmattress (I believe you said you already have one),hoist with a sling if necessary and anything else you may need including a wheelchair if required. I too met with a negative response when I insisted on having my husband home, but once they realised it was not up for negotiation, they soon accepted and gave me unconditional support.
Incidently my mothers NHS continued health care took less than 2 weeks to come through and was backdated to the date we applied. Unfortunately she only benefitted from it for 6 weeks before she died. I hope you succeed with your mission.

 

[steve58]

Jpg1

JPG1, thanks for your reply. I'm glad we are not the only one who thinks it ridiculous for us to submit a rota for the Ward Clerk to pass on to the Consultant. It came as a complete shock that she has had a turn around and is willing to let us have a trial with Mom. The Consultant has always been the same though, and passed messages on to us and has not 'invited' us to meetings etc. We really were at breaking point and were giving in, well in truth, we gave in. Everyone is in awe of this Consultant and what she says is law, believe me. So, we have had to toe the line to a certain extent even though , like yourself, we feel it should be the Consultant giving us the News and how she thinks we should go about caring for Mom, we are just so glad she has given the go-ahead we so badly wanted. The Ward Clerk said the Consultants main concern is the night-time changing. So thank you so much for your ideas. I will be writing them down and copying them. Its all so sudden and unexpected , we are actually in shock!. I agree about the body clock and certainly wont be telling the Consultant!!!!!!!
We had a phone call from the CPN yesterday who wants to come to see us next Thursday with the Social Worker. I expect they will go into more detail, again, we will be getting the information second hand!!!!!!

Its so strange, just when you think one is focused on what they want and how they will cope, the reality is that now we know we are getting Mom home, we haven't a clue on where to begin to get things in place. One again thank you so much for your suggestions. Im going to have to print them out as my mind is all over the place at the moment (I wont be telling that to the Consultant either!!!)
WIth kind regards

Steve

 

[steve58]

Winnie

Hi Win

Thanks for your reply. Im glad we are not the only ones appalled by the demands . We have had a living Hell for a year trying to get Mom the care and RESPECT she deserves and we realise it will only be at home that she will get it.. We were deeply shocked at the turnaround of the Consultant. She and the rest of the team played on our ignorance and vulnerability but I sent a letter asking for Mom to come home on compassionate grounds and two days later she said yes. But we are left in the dark. Having to submit a rota to her for her approval is unreasonable and we think she should be telling us what she expects. For some strange reason, she is not bothered about Moms diet, liquid intake or meds but seems obsessed with the fact that Mom will need to be changed or checked twice in the night and wants us to submit a rota by Monday (she is away on leave Tues) for her approval. She really should be telling us what to do. We are complete novices. Unfortunately, a lot of fight has gone out of us and we are doing our best to get Mom home and are putting up with unreasonable demands etc just so we know Mom will be home with the people she loves . Although her Vascular Dementia is advanced and she doesnt make much sense when she talks, she still knows us and loves us and most importantly she knows we love her. Our heads are buzzing at the moment, Its all been such a shock and such short notice. Im going to have to get my printer out and copy the replies as we dont know whether we are coming or going. About the equipment etc win, we only have a basic bathroom. so Mom would have to have bed baths. The ward clerk knows we live in a housing association home and told us to get a shower put in quickly. What planet do these people live on. Also thanks for the tip about the CHC. We get told so many different things by different people (social workers, advocates etc, they really dont want to help do they?!!)
You are a good friend win and thanks for your reply.
Hopefully, I will have calmed down a bit tommorrow and things will look more in perspective (but I doubt it !!!!!!!)

Steve xx