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I'm just desperate

DesperateofDevon

Registered User
Jul 7, 2019
2,742
So I’m new to joining this or any forum, but not new to avidly reading to gain any bit of insight or help from them over the years. Sound familiar?
So here I am with that horrid heart racing, bile in back of throat , continual headache & inability to function as a normal human being feeling that’s haunted me for almost a decade. Familiar ground I imagine for many who search through the forums when that rock bottom approaches as you plummet downwards.

Aged mother has undiagnosed dementia, recurring UTIs over the years that have only just lead to a hospital admission ( one month & counting) Now after having reoccurring UTI in hospital, ( Aged Mother been downing packets for cystitis for years!) suicidal thoughts & delusion, night time incontinence & urge incontinence ( this has all been ongoing for years) pneumonia - just finished treatment on Thursday when coincidentally she fell in hospital big bruise on head....... my aged parent is being discharged on Tuesday
Oh a care package ..yes 3 times a day
am/noon/tea
My husband ( I am to emotional- or so I am told! to be totally rational & not come across as mildly hysterical at times!!!! Really!!!! & breathe!) had a conversation with a nurse of authority shall we say who informed him that our aged relative is able to get out of bed, wash ,change their night clothes & bedding. Strange that Aged Mother was unable to do this 6 months ago let alone now with further cognitive deficiencies. Even stranger that nursing staff are still changing night clothes & bedding repetitively during the night in hospital.
But my life is weirder than that... oh yes friends .... if you’ve got this far in reading this post you are almost on my Christmas card list!!
On Thursday after being driven over the 125 miles ( each way!) to the hospital by my husband who didn’t finish work until 6:30pm ( sainthood in post!) I was greeted by staff ( yes I rang to ask if it was ok after hours to bring in clean washing) & informed by the lead nurse that she’d fallen & they suspected cause was TIA. Ah - not surprised as this has been happening a lot recently & yes hospital admission , GP informed. Infact it’s been going on for years ! She’s been through the fall clinic etc, & my Grandmother had exactly the same thing as did my Great Grandmother.

Reassured Aged Mother with big bump & bruise on head not being discharged anytime soon - nor the next week!

So the return journey home - (oh just to let you know folks my daughter drove me down the previous day to collect washing & visit Aged parent in hospital , & hubby soon to be saint did the Saturday driving to collect & deliver washing & visit. ) hubby & I we’re reassured that aged parent is in good hands

Imagine the next day receiving an email after office hours saying that same Aged Parent was going home on Tuesday!!

Another brief email if you can’t be there hospital transport will be provided!

Umm ... I’ve got the house keys, her purse & bag, plus we’ve cleaned out the fridge!!! It’s not like we haven’t told the hospital this or explained our situation
- I’m disabled & rely on others to take me on long distances
Plus I am self employed & working on this Fri/Sat/Sun with the aid of a support worker( hence hubby soon to be saint driving me & the clean laundry down!)
Hubby works during the week 200+ miles away
Daughter lives away & incidentally has a life of her own as she rightly should

So tomorrow I am working & mostly sleeping ditto Tuesday ( supposedly!) & Wednesday! How can I or my (soon to be ex) hubby ( if this situation doesn’t get resolved) be in two places at once?

Is it unreasonable to ask for a couple of days extension of care in hospital?

Ps
My aged father has Alzheimer’s & vascular dementia & was placed near me in a care home - Aged Mother wouldn’t allow anyone in to help him & wasn’t capable of feeding herself or him or giving him meds etc. Yes GP informed but Aged mother deemed competent by social services - What month is it? What is the queen called?

Ops I didn’t tell you Social services still deem her competent even though she has attacked neighbours & family verbally & physically, is found wandering not knowing where she is, has paranoia, delusions, hallucinations & has been deemed vulnerable by previous hospital admissions & won’t have tests done as is frightened of the results ! Our LPA might as well be used for toilet paper when we are cut short!!!

I need help & advice

Help!
 

Palerider

Registered User
Aug 9, 2015
1,932
North West
watkin.observer
I'm sorry I have just edited this to say welcome to the TP forum as a member myself.

Are you referring to the AMT test which is a short memory test and needs further assessment if she scores low, btw AMT is a valid quick test.

No it isn't unreasonable to ask the hospital to keep her, BUT you have to tell them that. Why don't you call the hospital and just tell them what you have said on here? If they don't give an answer tell them she can't come home until you have managed to put things in place, they can't go against that.


You seem fed up and angry, is there anything you can do to to help you?
 
Last edited:

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Are you referring to the AMT test which is a short memory test and needs further assessment if she scores low, btw AMT is a valid quick test.

No it isn't unreasonable to ask the hospital to keep her, BUT you have to tell them that. Why don't you call the hospital and just tell them what you have said on here? If they don't give an answer tell them she can't come home until you have managed to put things in place, they can't go against that.


You seem angry...is there anything you can do to calm yourself and make you feel better to cope?
Hubby has rung hospital & we have repeatedly explained our situation to SW, GP, SS, over the past month but no one seems to take notice.
Yes I’m angry but at the indignity of the situation that Aged Mother is put in.
How awful to have these delusions & be frightened & lack ability to explain this & be afraid of if you do what will happen. We have clauses written into the LPA to ensure Aged Mother is kept at home as long as possible- but her previous refusal of any care package for herself of my father led to hospitalisation for her & respite for him which he didn’t come home from.
Mums mental capacity fluctuates “hostess mode “ but the hospital have seen a full spectrum of all the issues
How can you discharge someone who cannot get in & out of bed without assistance etc

It’s cruel!
Plus she doesn’t want to move but is telling family & friends she’s moving near us & buying a new bungalow but not selling hers!
No she doesn’t have that sort of finances

I have been looking after my parents for 6 years with no help until 8 months ago when my mum attatcked my dad & his sister finally rang the Doctors & supported my previous claims. That my mum had denied & id been labelled a fantasist.
So if I come across as angry yes I am a little bit , more so I am devastated to watch my parents disintegrate with this disease. Frustrated that neighbours family & friends can see what’s happening & yet sw is more concerned with deprivation of Liberty issues than health, safety & duty of care.

A care home isn’t always the best answer but for my DAd - to quote my husband
It’s the best version of ****
 

canary

Registered User
Feb 25, 2014
13,384
South coast
Hello @DesperateofDevon and welcome to DTP

Well she isnt going to get in without keys! Find out what is happening about her TIA. It may well be that two people are not communicating with each other.

My OH had a stroke just before my mum died and was in hospital during her funeral. I told the hospital this and said that consequently I would not be available. Nevertheless the ward was extremely upset that i had switched off my phone and they therefore could not get through to me when they wanted to discharge him and for me to collect him............


BTW, tell people local to your mum to call the police if your mum attacks them, or is found wandering. Neighbours can also contact Social Services Safeguarding. All these things will be reported and there will be written evidence that she is not safe at home.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Hello @DesperateofDevon and welcome to DTP

Well she isnt going to get in without keys! Find out what is happening about her TIA. It may well be that two people are not communicating with each other.

My OH had a stroke just before my mum died and was in hospital during her funeral. I told the hospital this and said that consequently I would not be available. Nevertheless the ward was extremely upset that i had switched off my phone and they therefore could not get through to me when they wanted to discharge him and for me to collect him............


BTW, tell people local to your mum to call the police if your mum attacks them, or is found wandering. Neighbours can also contact Social Services Safeguarding. All these things will be reported and there will be written evidence that she is not safe at
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
I have asked her neighbours to do this but historically they have refused. They agreed to me passing on the phone no’s to SW but nothing ever happens.
They are not young & avoid my Mum at all costs.
She can be very awkward but also does amazing hostess mode for Drs etc
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Oh & hubby has now taken over all communication with hospital as I keep getting emotional & bursting into tears!
Hence battlefield sense of humour - if I don’t laugh I cry ..... alot
 

Palerider

Registered User
Aug 9, 2015
1,932
North West
watkin.observer
I have asked her neighbours to do this but historically they have refused. They agreed to me passing on the phone no’s to SW but nothing ever happens.
They are not young & avoid my Mum at all costs.
She can be very awkward but also does amazing hostess mode for Drs etc
No, this is about your arranegements for her to come home safely not her hostess mode or anyone elses ideas......she can't return until you are happy that the right provisions are in place, that is a conditional statement you need to make outwardly to the hospital and anyone else listening to you

I have to leave you now as i have to get up at 6 for work, I hope you find a resolution, I'll check to see tomorrow how you've got on
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
No, this is about your arranegements for her to come home safely not her hostess mode or anyone elses ideas......she can't return until you are happy that the right provisions are in place, that is a conditional statement you need to make outwardly to the hospital and anyone else listening to you
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
It’s time to get the big girl pants out
As the saying goes...
really appreciate the advice as before with Dad it got so bad as I didn’t know what to do. Just can’t face the same battle again in such a short time ... but want to get it right this time
Thank you
 

charlie10

Registered User
Dec 20, 2018
397
Dear @DesperateofDevon.....I'm sorry I can't give you any advice, I'm not in the Uk, but I had to stop and send you a hug, we're having the same frustration with authorities showing very little common sense (or even having actually listened to us!).....try not to pull too much of your hair out, it's not a good look! :eek::rolleyes:
 

Stripey3

Registered User
May 29, 2019
33
Hi there,
I found myself in a similar situation with my Dad.
Too cut a long story short I ‘advised’ the hospital that they couldn’t discharge him until an appropriate care package was in place for him. Then came the battle with SS. It prolonged his hospital stay by 5 days but the right care package was put in place.
You must stand your ground, both the hospital and SS have a duty of care to your mother.
It’s a battle and I was reduced to tears in many occasions but you have to persist.
Best wishes
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,758
Nottinghamshire
Welcome to Dementia Talking Point @DesperateofDevon

I’m sorry you’ve found yourselves in this situation. It’s one I found myself in last summer with my dad after he had a stroke and was completely unsuitable for discharge. The hospital said he was medically fit and discharged him anyway. He was then returned to hospital the next day...and again they tried to discharge him.

I got in touch with NHS PALS and they were very helpful in communicating my concerns regarding dad being discharged home with a care package of 4 visits a day as I felt that because he was getting up and falling, incontinent and unable to do anything for himself that this was not sufficient to keep him safe.

You are in a strong position at the moment so stand your ground and do not let them have the keys. It doesn’t sound to me as though your mum should be on her own but you will need to stay strong.

Have you spoken to the hospital social worker? (PALS should be able to help you with this too). I found ours to be very knowledgeable and helpful and she managed to get dad an assessment bed in a carehome which eventually lead to a permanent place although I had to fight for that too.

Make it clear that you are not able to look after your mum and you will hold them responsible if anything happens to her.
 

RosettaT

Registered User
Sep 9, 2018
508
Mid Lincs
I didn't have your problem with the hospital wishing to discharge my hubby with no regard to ongoing care but I did have problems with one ward in particular. TBH my hubby was in 7 different wards in 6 weeks as there was no where specific for him but this one ward had very little understanding of his needs even tho' I constantly told them they couldn't just place a cup of tea or meal in front of him then clear it away later (I saw this happen). In the end they raised a food and drink chart for him I filled it in at lunch on the Monday went in again Tuesday afternoon and nothing had been added to the chart, no supper, breakfast or lunch entries no drinks either. They were extremely embarrassed when I pointed out that meant they had either totally ignored his food and drink needs or omitted to complete paper otherwise the chart would have have some form of written entry.
In the end I went in at meal times to feed him.
It wasn't until I bandied phrases like 'vulnerable adult' & 'duty of care' & 'safe guarding' they actually took notice.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Thank you folks
Having battled over 2 years for care for my Dad , mum refusing it & sending them away - mums been deemed capable
I am to tired to fight anymore & poor health means that the system will have to deal with the consequences
We have made this clear
No dignity in old age but at least Mum won’t accuse me of interfering anymore & I can just be a loving daughter & not the whipping boy for all concerned.
I love my parents dearly but I can’t fight this system
It’s in place to protect - so let’s hope it does
Thanks again peeps
Xxx
 

canary

Registered User
Feb 25, 2014
13,384
South coast
I am to tired to fight anymore & poor health means that the system will have to deal with the consequences
We have made this clear
I think stepping back is a good idea, but you do have to make it very plain to the hospital social worker that you will not be there to care for your mum. Your mum is quite likely to say that you will do everything for her and she would almost certainly be believed,
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Have taken advice from the helpline. We have explored all avenues available & now will be resorting to letting what will be will be. Duty of care emails sent
Sw won’t take our calls, or phone when requested by SS ! Hospital are saying Aged mother deemed competent !
Even though she tells us the nursing staff are throwing stones at her husband when he comes to visit!
He’s in care 125 miles away !!
Hospital staff also told us we had to buy & incontinent pants !!!
Don’t know wether to laugh or cry as SW says we can’t use Mums account to purchase things as she’s competent!!!

I think I must be having a bad nightmare & will wake up one day !
Just when you think it can’t get any worse
 

canary

Registered User
Feb 25, 2014
13,384
South coast
Hospital staff also told us we had to buy & incontinent pants !!!
make sure that the hospital staff know that the SW has said that you cant use her account to buy things for her as she has capacity, so, no, you wont be buying the pants for her.

They are still assuming that you will be doing things for her. Keep telling them that you wont.