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Don't think I can do it again.

Spiro

Registered User
Mar 11, 2012
522
Have just spoken to the lead on the discharge team who wanted to send her home today. He said that a care package had been put in place (nobody has told us). I asked about the stairs because they are very steep and since her collapse she has been very dodery. Told that she would be sleeping downstairs. Asked what was to prevent her climbing them but he said that he did not think was an issue.
Do you have POA for Health and welfare and Finance and property? I would suggest that is one of the main priorities while she is still in hospital, but don't say that to the medical staff.

I have known people to arrange for a solicitor to visit the hospital.

You don't mention if she is on any medication for her dementia. If she definitely has Alzheimer's, as opposed to any other type of dementia, then I'm surprised.

Why not ring her GP and explain the situation and ask for a re-referral to the memory clinic.

One other thing, how good is her eyesight? People with dementia need three times as much light. Maybe improving the lighting in her home would help.

Regarding the care package, I would want to know who her named social worker is and the details of the care package.

Either that, or re-ablement, up to six weeks at a local hospital - that might be a solution.

Ideally, she would have been seen by a physio and an OT before discharge.
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
witzend
thankyou for the message. I am not allowed by the forum to pm back as I do not have enough posts.
Did you, I wonder get a curling pit of dread in your tummy at the thought of doing it all over again? That, and my guilt, is keeping me awake at night.

I was going to write that its nice that so many other people have been there and done that, but perhaps "nice" isn't the word!

Thanks again for taking the time to pm, it all really does help.
Now off to do battle at the hospital.
x
No, I didn't get that feeling, because my previous experience of 24/7 care meant that I knew I was never going down that path again.
But I did often feel still feel guilty, even though I knew my mother would have been the first to say, 'You all have your own lives to lead.' Her own mother had dementia towards the end, and she only ever had her to stay for a few days at a time, but even that drove her up the wall. I remember all too well the state she'd be in - she had less patience than I do!
All the best - do please keep us posted.
 

haribocrazy

Registered User
Jan 8, 2016
38
thank you for the replies
Spiro--mum does not own anything. She has only her state pension, so not a lot to control. All her bills are on direct debit, but I will have to do something about her money because I cannot afford to do all her shopping etc. Also the cost of travelling each day is very expensive, but I don't feel that I can ask her for petrol money. She would hate anyone else to have control of her money and I feel that POA would be another big fight.

As to medication--not entirely sure what she is on now. I know that it has changed from what it was when she went in. I do know that she has to see her gp when she is home. I asked about referrals to clinics etc and was told that we had to do that via the gp when she went home. I am going to ring the gp and discuss this. Even this worries me now, not the appointments but how I am going to arrange it all. It would mean me taking more time off work--and this is not just a bit of the day, but because of the travelling it means nearly ALL of the working day.

She has been seen by ot and physio. My brother has discussed her care package but was told that there was nothing for him to "read" at the moment. Hopefully it will be ready when she leaves.

Did not know about the eye sight and light levels, although that does explain a great deal, so thankyou very much for that. She has been complaining recently that her glasses are not strong enough, but when I took her for a test a couple of months ago the optician said that they were fine. It would also explain why she can read perfectly well sometimes and not others. Thank you for that and I will change bulbs etc.

Would she come out with a named socail worker? I speak to different people every day and have not been able to pin down one person.

Feeling a lot better about everything today. Slept well last night, first time for a while. We have sorted out her sleeping arrangements for downstairs, but still worried that she will go upstairs when she is not supposed to. We talked about maybe getting stair gates but in her lucid moments she is quite capable of undoing them and I am scared that they will just be more of a hazard.

Hopefully her key safe has been fitted and she will be home. Thank you alll once more and I have picked up some very useful info on here and the support has been invaluable.

Witzend--I too have little patience! I am quite good at doing stuff, such as arranging appointments, sorting housing shopping etc, really bad at just sitting talking or repeating the same conversation several times. I already find it difficult and so am avoiding spending "quality" time with her.
 

Pickles53

Registered User
Feb 25, 2014
2,474
Radcliffe on Trent
thank you for the replies
Spiro--mum does not own anything. She has only her state pension, so not a lot to control. All her bills are on direct debit, but I will have to do something about her money because I cannot afford to do all her shopping etc. Also the cost of travelling each day is very expensive, but I don't feel that I can ask her for petrol money. She would hate anyone else to have control of her money and I feel that POA would be another big fight.

Feeling a lot better about everything today. Slept well last night, first time for a while. We have sorted out her sleeping arrangements for downstairs, but still worried that she will go upstairs when she is not supposed to. We talked about maybe getting stair gates but in her lucid moments she is quite capable of undoing them and I am scared that they will just be more of a hazard.

Hopefully her key safe has been fitted and she will be home. Thank you alll once more and I have picked up some very useful info on here and the support has been invaluable.

Witzend--I too have little patience! I am quite good at doing stuff, such as arranging appointments, sorting housing shopping etc, really bad at just sitting talking or repeating the same conversation several times. I already find it difficult and so am avoiding spending "quality" time with her.
Your last paragraph could have been written by me! I was doing 120 mile round trip at least once a week, so frankly I did not feel bad about petrol money coming out of mum's funds either, particularly as my two siblings were dong literally nothing to help. (I did have sole POA which mum had set up quite a few years before she got ill, and thank goodness for that.) If you were not helping out, most likely it would cost more of your mum's money because extra career time would be needed. It may b a fight to get POA but maybe if you can present it as 'helping you while you can't get out to the bank' you may get her to agree. If not, or as an interim measure, perhaps you could become an 'appointee' for all her pension income; contact the DWP and this can be set up quite quickly.

I'm glad that you are feeling better; a good night's sleep always helps. Hang in there, and keep standing your ground about the amount of help you are able to give; do not be bullied or guilt-tripped. Hopefully once the care plan is in place things will settle down a bit.
 

arielsmelody

Registered User
Jul 16, 2015
516
Spiro--mum does not own anything. She has only her state pension, so not a lot to control. All her bills are on direct debit, but I will have to do something about her money because I cannot afford to do all her shopping etc. Also the cost of travelling each day is very expensive, but I don't feel that I can ask her for petrol money. She would hate anyone else to have control of her money and I feel that POA would be another big fight. ...
For her shopping - would doing it online with one of the big supermarkets be an option? If you can't organise power of attorney, maybe you could get her to 'help' you set it up, then at least you could get shopping delivered relatively easily.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,134
Yorkshire
Hi haribocrazy
you're doing a grand job organising everything - I guess the more there is in place asap the less there will be to sort out later, but it is a whirlwind at the moment
glad you slept well - tired out, no doubt

I'm concerned about the stairs too - does your mum have any need to go upstairs, or will anyone who visits? - I'm just wondering if you could have a carpenter round to fit a temporary 'door 'across the opening, if this is possible, if necessary have it on hinges with a padlock so you can gain access - I agree a baby gate wouldn't be a good idea, best to not be able to see the stairs or climb over a barrier

but is the bathroom upstairs? - I guess there is a downstairs loo at least, but are the carers going to help your mum have a 'slipper bath'?

would your mum be happy to write a letter to her GP to confirm that she wants you and your brother to be involved in her medical affairs, so that you can make appointments, be informed of her medication etc? I hope she will agree to POAs eventually.

I really hope all goes well and she settles back at home - so that you can all have a rest
 

Spiro

Registered User
Mar 11, 2012
522
Did not know about the eye sight and light levels, although that does explain a great deal, so thankyou very much for that. She has been complaining recently that her glasses are not strong enough, but when I took her for a test a couple of months ago the optician said that they were fine. It would also explain why she can read perfectly well sometimes and not others. Thank you for that and I will change bulbs etc.
The RNIB shop sell some suitable lighting - you can buy battery operated motion sensor LED lights which are suitable for hallways, etc.

http://shop.rnib.org.uk/catalogsearch/result/?q=lighting

If a domiciliary OT does a home assessment and recommends installing additional stair rails and provides bathing aids/seats.

Then maybe your Mum could use the stairs and continue living as before.

This book is very useful - you can buy it online.

http://juneandrews.net/dementia-the-one-stop-guide/

One last thing, the discharge planner should ideally be a nurse.

If you can, keep records of who you spoke to and when. Tedious and time consuming I know.:)
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
Haribo, welcome to TP. There is such a lot of good advice, information, and support on here.

I'm sorry as I've not read your post as thoroughly as I might have, and this is a bit rushed. I am sorry to hear about the situation with your mother. You have a lot going on and the hospital is clearly not communicating with you well at all, which makes everything harder. I am sorry.

I want to say that you should not beat yourself up for feeling overwhelmed, especially as you've been a carer before. Sad facts about dementia (Alzheimer's or any other type):

-it will get worse over time, but nobody can predict exactly what will happen or how long it will take
-it does present a lot of challenges with daily living and behaviour
-in addition to the symptoms a lot of us know about, like memory problems, there are things not all of us know about ahead of time: delusions, sundowning, agitation, sleep disturbances, incontinence, eventual inability to learn new things, problems with UTIs, et cetera.

There is a lot of good information available from the Alzheimer's Association. When you have time, which is probably not right now, you might explore their website.

Another thing you should know right now about dementia is that it will eat as much of your time and energy as you throw at it. You can budget your time and energy and get help, or you will spend an awful lot of your time dealing with it one way or another, in ways both big (medical appointments and emergencies) and small (too many to mention).

I hate to be the voice of doom, but you are right to be concerned about taking this all on.

Don't lose sight of the fact that you are important, you have a right to your own life, and in the UK, you cannot be forced to be a carer.

Having said all that, and if I haven't totally frightened you off, some details.

While I am in the States and have a very imperfect understanding of how a lot of things in your system work, I do know that you should be able to ask any nurse or staff member at the hospital for a list of your mother's current medications. You can politely but firmly ask, and just stand there until they print it out and hand it to you.

I would also not agree to your mother's discharge from hospital until they have a discharge plan in place and you have clear information, in writing.

If you don't already have PoA, get on that, because you are going to need it.

In the meantime, I'd contact her GP and although they may say they cannot talk to you without your mother's permission, you can talk to them. Tell them what is going on and see if they can get written or verbal permission from your mother to talk to you. A helpful GP will know how to do this.

I'm not sure how you arrange visits to the house from OT and the falls team, but someone here will know. This is important for her safety. The stairs are a huge hazard and the OT/falls people would have suggestions about that, I am sure.

Don't beat yourself up or feel guilty about not being good at patiently sitting there and listening to the repetition. It's enough to drive a saint mad in minutes! If you are more comfortable with the paperwork/administrative side of things, give yourself credit for that. It needs doing and it is still caring for your mother.

Don't forget about support for YOU. TP is a great resource. There are also carers cafes and support groups and you may want to find one of those in your area. It can help to be with other people in a similar situation and have a coffee and a chat. You might also tell your GP what is going on.

Finally, please do try to be as kind to yourself as possible, and sleep and eat properly and so forth. Also please remember that the enemy here is dementia, it's not your fault, you've done nothing wrong, and you are not a terrible person.

Best wishes to you and your family.
 

velocity

Registered User
Feb 18, 2013
175
North Notts
Dont think I can do it again

I am sorry I haven't read all the accounts but if you feel you cannot do this then don't, nobody can make you or guilt trip you into taking this responsibility, it would not be right for you or your Mum. xx
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
Re repetitive questions, I do think this can be one of the most mentally exhausting aspects of dementia. With FIL I once counted 35 times in one hour - mind you this was the only time I actually counted.

When we were very new to it all (and blithely confident that there MUST be an answer - ha!) - we thought that if we printed nice, big, clear, simple answers to the ?s he was asking over and over, and laminated the A4 sheet, and gave it to him so that he could always see it, that would solve it.
We hadn't yet realised that his memory loss meant that the instant he had turned his eyes away from it, he would forget and ask again.
The only way I found to cope without going off my head and screaming, as I have said here before, was to make a sort of separate compartment in my head, where I could go on answering nicely, but mechanically. Any hint of irritation was liable to send him into a furious rage, so I just couldn't risk it.
 

haribocrazy

Registered User
Jan 8, 2016
38
So many helpful replies. Thank you all.
Just a quick update.

Sorted out her downstairs living arrangments. Shopping done and house as safe as we can make it. Brother and I went to pick her up from hospital. Before we left we phoned the ward and said (again) that we were not happy taking her home with the arrangements that had been made, but if the discharge team were content that she would be safe then we would have to accept thier decision. We did ask for the name of the person who had signed off on her care and asked that they put this conversation with us in her notes.

When we arrived we were met by the ot. He said that he had never said that she would be safe , did not know which person had said that she should go home. He said that the key safe was essential and they should have fitted it and that there had obviously been a breakdown in communications. He apologised. Turns out that she should have more in place thanhas been arranged.

So--now not home until tomorrow. will be accompanied by ot who will assess her safety at the house. As it is a HA house we are not keen to make holes to put up a door across the stairs and as she is physically well we feel that a stair gate would be even more of a hazard, if she tries to climb over it or pull it down.

We also have a name now who will sign off the discharge plan--this was not completed yesterday and I think that because we kept asking for it and it had not been done was one of the reasons she has been kept in.

She is also meant to go home with a 7 day ecg and this had also not been arranged.

we had a look at mums notes as well. Many of the calls from the hospital to us demanding that we take her home have not reflected the conversations we have had. Much of the info--we saying about stairs, safety etc, has either not been documented or phrased ina way that does not seem to be us saying " this is unsafe". Don't really know what to do about that.

Anyway--she will be going home tomorrow with 4 care visits a day for the next week, perhaps the next 6 depending on her health. The hospital has arranged transport and has said that one of us can accompany her on the transport. We did not even ask for this!!
We are being sent appointments for memory clinic. I have contacted ageuk about maybe going to the lunch club and transport.

TBH I am a bit fummoxed. Seem to have spent the last few weeks fighting for someone to listen and now that someone has I don't really know what to do. The discharge planner asked us what we would like--I said that I know its impossible to prevent harm, except by locking her in a room and only letting her out with someone with her. Not only is that impractical but she would hate it. I don't want to take away all risk because then she would have no life at all.

She still enjoys a lot of things and I want her to have those things for as long as she is able. I just don't want to go over and find her with a broken neck at the bottom of the stairs or have blown up the gas cooker etc. So--now we have visits x4 each day, a lunch club and memory clinic. The ss also said that they would support a house move to more suitable housing. I think that at the moment this is as good as we can get. She will still have a bit of an independent life, someone will see her and the stairs are now an imprtant issue in the care plan.

Many thanks to all on here for the support to keep fighting and to keep saying no. If we had said "yes" when first asked to take her home she would now have the added support of a raised toilet seat and nothing else.

It is very difficult to say "no" in the face of 2 or 3 calls a day asking why we are refusing to take her home. This should not be fight. I really feel for those older people who have no one to fight thier corner. Not the one with dementia so much (mumhas no idea why there is a fuss and is very angry about the arrangments) but the elderly carers who feel that they have no right to say no. Forums like this and the kindness of strangers is invaluable.

And I have no doubt I will be back for more advice--perhaps tomorrow when it does not turn out as expected!
 

haribocrazy

Registered User
Jan 8, 2016
38
Forgot to mention in my previous massive post that we had a phone call in the morning to say she had been reassessed and did not need any care or a key safe and so if we did not take her home the hospital would just send her. When we arrived this was apparently from a physio who said that she meant that mu did not need physio rehab--which she never HAS needed. It would save so much time and effort of different departments talked to each other.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
9,134
Yorkshire
Hi haribocrazy
your tenacity seems to be paying off - you've done good :D
as to the notes - if you have the energy, type out a more accurate record of the calls and have them added to the file - maybe even staple it on yourself (not really allowed!)
I agree it should not be a fight; it should be teamwork - however, the more those who can make clear what is an expected and acceptable level of care do fight their corner, hopefully the more care will be put in place as a matter of course - so you've done well for others too
I really hope this works for your mum and for you
 

angelface

Registered User
Oct 8, 2011
1,085
london
Hi haribocrazy,

Now comes the really hard bit for you. Can you stand back and let the paid carers look after your mum? As far as I know, 4 visits per day is the most you can get.

If that does not work,then SS will have to find a placement for mum. For your own sake please dont visit more than you can cope with.

Hoping things will somehow work out well for you.
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
Haribocrazy, I'm amazed and impressed by what you achieved with your tenacity.

Regarding the gas cooker, there have been other threads on here about a way to lock the gas so that the PWD (person with dementia) can't leave the gas on and blow up the neighbourhood, but so carers can still access the cooker for meals, etc. I will see if I can find you a link (or nitram or someone else here might beat me to it).

I have no idea what to suggest about the stairs, that's a tough one. Even in a care home or with closer supervision, someone could fall, and all living carries some risk, as you rightly point out.

I hope the discharge today goes as well as possible and that you are, as others here have said, able to step back and let the care package kick in. We know this is very easy to say and very difficult to do. Just the paperwork/administrative stuff alone, plus things likes doctor's appointments and the phone calls and so forth, can be a full-time job. Don't kill yourself.
 

Spiro

Registered User
Mar 11, 2012
522
Pals

I think now would be a good time to see the PALS team at the hospital and register your concerns/complaints. The PALS officer you speak to should be your named contact. PALS should contact the ward manager/senior nurse who should investigate why you have received such unhelpful service.

I know this means more work for you, but it is far better to take action while your mum is an inpatient. You don't want to have to chase things up that you thought were in place, after she has been discharged
 

RedLou

Registered User
Jul 30, 2014
1,162
I hope the discharge today goes as well as possible and that you are, as others here have said, able to step back and let the care package kick in. We know this is very easy to say and very difficult to do. Just the paperwork/administrative stuff alone, plus things likes doctor's appointments and the phone calls and so forth, can be a full-time job. Don't kill yourself.
Haribo, it may help if you set in your mind the number of hours you can spare in an average week and try to stick to that. You won't manage some weeks because of crises but if you can manage it most weeks, it will help to keep your own life and priorities in tact. Frankly, if you moved in with your mother and stayed awake 24-hours, you might still be unable to satisfy dementia so don't let it consume you. Well done on everything so far and on repelling their appalling blackmail attempts.
 

Pickles53

Registered User
Feb 25, 2014
2,474
Radcliffe on Trent
Haribocrazy, I'm amazed and impressed by what you achieved with your tenacity.

Regarding the gas cooker, there have been other threads on here about a way to lock the gas so that the PWD (person with dementia) can't leave the gas on and blow up the neighbourhood, but so carers can still access the cooker for meals, etc. I will see if I can find you a link (or nitram or someone else here might beat me to it).

I have no idea what to suggest about the stairs, that's a tough one. Even in a care home or with closer supervision, someone could fall, and all living carries some risk, as you rightly point out.

I hope the discharge today goes as well as possible and that you are, as others here have said, able to step back and let the care package kick in. We know this is very easy to say and very difficult to do. Just the paperwork/administrative stuff alone, plus things likes doctor's appointments and the phone calls and so forth, can be a full-time job. Don't kill yourself.
This is the lockable gas valve we had fitted at mum's house. Cost about £100 with fitting.

It worked very well except that mum kept phoning me to tell me the cooker wasn 't working and could I get someone in to fix it.

http://www.gasproducts.co.uk/acatalog/Full_Bore_Lockable_Gas_Ball_Valve_3_4_.html
 

haribocrazy

Registered User
Jan 8, 2016
38
Again---many thanks!! Am casting around for different ways of saying that, but please believe that its very heart felt.

I have already spoken to PALS about her teeth. My brother really does not want to take this any further and I can see his point. But I keep thinking about those without a voice or what might have happened if I had not told the ward that she had had a drink on the day of her echo-cardiogram. So, I think I might have to do something.

On a similar note--I went to visit her yesterday and she was in fine form. When I got there she was busy feeding the lady in the next bed fruit pastilles and both were laughing and very happy. Unfortunately, this lady was also due to go for an endoscopy. The staff had removed her drinks and food and had told mum not to give her anything. Its very odd that they do not seem to think that someone who cannot remember the start of a conversation by the time they get to the end will remember instructions about food! The 2 old ladies thought it was very funny and had the ward in stitches -- not sure that the staff found it funny but it was great to see her laughing and tbh I thought it was funny as well!

I am going to have to let the carers get on with it because i don't really have the time to be there, unless I give up work and the days I look after my grandson. And I am not prepared to do that (and cannot afford it either). I am going to see her one day a week and leave it at that. My brother will have to deal with most things because he lives in the borough, but he is moving even further away in a few months and so she will be really alone down there. But thats a worry for a different day.

I have not done anything about the gas--meant to look at that and totally forgot. will have to do that tomorrow. Thanks for the reminders.

We cared for mums husband (she remarried after I left home) as a family and he was ill for several years, the last few almost completely housebound. However, he never suffered from dementia. He was always himself. This is so much harder.
 

fizzie

Registered User
Jul 20, 2011
2,730
Hospitals lose teeth hearing aids glasses and older people on limited incomes are having to replace them. The hospital have a duty to replace them and I think they have a duty to respect people's dignity. I understand that people might not want to take things further but to be honest for some people it causes real financial hardship and for others they simply cannot get to the optician or dentist and so it causes a life of social isolation and discomfort and more people that take them to task then the less likely it is happen. So I would beg you on behalf of all the people that every hospital treats in this slap happy fashion to write a letter demanding that they replace them.

I think that was very funny about the endoscopy but I suspect they now have to keep your mum's new friend in another day which is why they won't find it at all funny but serves them right

Good luck , your mum sounds a real character - she would be well loved at a day centre if that is possible, everyone needs a bit of fun in their lives and she does sound as though she would be a great addition to a day centre/lunch club. We have one that people can go to 3 or 4 times a week and it makes a huge difference to their lives, just a thought. I have visions of her leading them into all sorts of mischief!!