Mum in Hospital, I'm at my wits end

[FlyingNut]

Hi,

I'm in probably no different a position to many others on here but I'm at my wits end and don't know what to do or how to get through what the next few weeks will bring.

Long story short, I have lived in my parents home since they bought the house late in life and my 'bed & board' paid to them helped fund their mortgage payments. In November 2021 my Dad died suddenly leaving me as sole carer for my mum who has terminal bowel cancer (with a stoma and anal bleeding from the tumour now requiring nursing care she can no longer attend to herself) and dementia. Under his will his 50% of the house passes to me but probate is yet to be finalised.

We have muddled by with me caring for mum for years but about a month ago my mum had a fall and split her head open necessitating a trip to A&E and an admission to hospital where she has been ever since. Whilst her Dementia was worsening with increased confusion and delirium prior to the fall, the 36 hours in A&E prior to her admission did not help and it was off the scale for the next couple of weeks. Unfortunately the ward mum is in is full of bed bound patients with no stimulation of any sort and on my daily visits I saw mum's mobility go from someone who walked in to someone unable to get from the bed to the chair unaided. On my daily visits I have taken her for a walk and I'm pleased to say she has regained 90% of it back to the extent that she's now wandering all the time and generally making a nuisance of herself both day and night.

After 3 weeks I'm told that medically she has now reached her baseline in their opinion and the initial diagnosis of delirium has been amended to 'confusion' as whilst it was delirium she was stuck between social services arguing she was the responsibility of the NHS and vice versa. She has been referred to the complex discharge team and I'm told that she has been referred to social services who will determine a suitable care package for her. I was assured that I would be consulted and involved in a meeting with the medical and social services team (with an advocate if I wanted) before any plans were decided but I was told tonight that social services have already been to the ward to see her.

As mum is now she is almost back to where she was prior to her fall but she does display very odd behaviours and her constant wandering and confusion has resulted in the medical team opining that she needs 24/7 care and would be unsafe to go back to her home where I live with her. Mum has savings above the £24K threshold and she own half the house so will almost certainly be assessed to be a self funder. My nightmare therefore is that if they 'force' her to go into a home, with the fees of circa £10K per month I am being quoted, they will soon burn through her money and I'm told will probably put a charge on her share of the house which I would then have to sell in order to pay this when mum dies.
Mum has been assessed and declined for CHC Fast Track as whilst her prognosis is 'poor' they have opined that she is not 'end of life' yet and as she is eating and drinking was considered unlikely to die in the next 12 weeks!

I am therefore stuck in limbo as Mum knows she is not at home and every night begs me to take her home and wants to know why I'm doing this to her. I feel very guilty about her spending her finite time trapped in a hospital ward that would drive anyone mad. I have asked if I could take her home for a day to see how she fares at home pre-discharge but I'm told this is not possible. Her nurses tell me that she wanders all night and can't be left so if I did push to get her discharged to me then on my head be it. I am struggling not to lose my full time job and I cant stay awake all night to supervise her so if she is at home she will have to be left alone for parts of the day which they say is unsafe.

What options do I have here, can I block her discharge if I do not agree with what they propose? Should I stop being selfish and devote myself to her for what time she has left (i.e. give up my job to become her full time carer but even then I can't do 24/7) and having multiple carer visits will make living here with her untenable.

I am facing life changing health issues ahead too and I am so overwhelmed with mental health problems at the moment that I am barely functioning and not moving anything forward. Quite frankly the option of not being around to have to deal with this is becoming an attractive one and I think maybe the best as it will remove any issues about the house etc.

Has anyone got any hints or ideas what I can do or should I step away and let SS look after mum without the issues that me being around brings? Can I hold out for CHC and refuse to pay for mum's care in whatever package the SS & NHS deem appropriate?

The killer is that I always promised mum and dad that I'd never consider a home while she had some cognition and there's the rub, she's bad about 60% of the time and like tonight for example, demonstrates challenging and aggressive behaviours, but the rest of the time she is lucid. The thought of not allowing mum back to the dead and lifeless house I now find myself living alone in is heart breaking and is not a life I think I can get through alone (my partner of 9 years dumped me on NYD due to the mental health issues the last two years of caring has caused me).

Should I keep pedalling or give up?

 

[Kevinl]

Sad fact is that dementia is seen as a social care issue not necessarily a health care issue, some piece of double speak I know but CHC is continuing health care and apparently a medically diagnosed condition like dementia isn't a health problem, load of rubbish but that is how it seems to be.
Never give up but don't expect too much.
Wife and mum for me, both sadly no longer with us both had dementia, it's hard but it's hard in an empty house too getting lonely too, me I'm just keeping on pedaling, who knows what tomorrow will bring. Time for bed. K

 

[Jessbow]

Dont keep tryiing to push water up hill, its not going to get any better

Admit defeat, and have her cared for , You wont be letting anyone down, imaging what your Dad would have thought- would he really want you to do yourself in looking after Mum? no

''Hanging out for CHC'' wont work- if terminal bowel cancer doesnt qualify her, nothing will, so that wont be forthcoming.

Press whoever is sorting out the probabte to get it finalised-

 

[skylt8]

You've just got to accept there's no great outcome here and just go with the lesser of the evils. But none of this is your fault, you've found yourself here through no fault of your own. Look after yourself first, Mum second. Maybe easier to let someone else take the weight? Doesn't mean you can't visit regularly, and take her out to see nice places. If you haven't already I'd speak to a financial advisor who specialises in dementia re the house. They may have some good advice.

 

[skylt8]

You've just got to accept there's no great outcome here and just go with the lesser of the evils. But none of this is your fault, you've found yourself here through no fault of your own. Look after yourself first, Mum second. Maybe easier to let someone else take the weight? Doesn't mean you can't visit regularly, and take her out to see nice places. If you haven't already I'd speak to a financial advisor who specialises in dementia re the house. They may have some good advice.

p.s. I think if we realised the pressure we put on loved ones by making them promise not to put us in care, we wouldn't do it.

 

[DollyM1]

Firstly, promises made to never put a parent or partner into a home is very rarely made with the knowledge of how much care the PWD will require, so don’t think you are breaking a promise, you aren’t. Your mum needs 24/7 care, something you, with the best intention, cannot provide as you cannot stay awake all day and night.
Secondly there is, in certain circumstances, a disregard made on property possession. I’m sure someone will come along with exact details.
And last, please don’t consider leaving your job. You need to have something that is ‘normal’ and constant in these unsettled times that you are going through. Xxx

 

[Collywobbles]

The promise not to place someone in a care home, is one made in good faith which simply can’t be kept a lot of the time.

We wouldn’t keep that promise to someone terminally ill with something else, who was in need of specialist hospice care to keep them safe and pain-free. Why would we think something different applies to a person with dementia?

As much as society tries to trick us into believing it’s just a social or care-based condition, it’s a medical condition and disease like any other. It will usually reach the point of needing specialist care beyond anything that can be provided by family.

Years ago, after my paternal granny went into a care home, both of my parents told us that we shouldn’t ever feel guilty about doing the same for them. Of course now they’re in their 80s and Mum has dementia, it’s their biggest fear. Life changes around us. All we can do or say, is our best at any given moment in time. And what that looks like will change as well.

 

[FlyingNut]

Thanks all for the advice. The scary bit is I keep finding myself thinking if only I hadn't woken up this morning this would all be over and I find myself drawn to researching ways to make that happen :-(

 

[canary]

The scary bit is I keep finding myself thinking if only I hadn't woken up this morning this would all be over and I find myself drawn to researching ways to make that happen :-(

You have reached carer burnout
Please get some help for yourself and don't even think about having her back home. You need space to recover
xxx

 

[FlyingNut]

Sadly its more than that - I have so much I cant face dealing with and living her alone while Mum deteriorates in a hospital is killing me literally and physically. Can stress pop you off?

 

[maggie6445]

The promise not to place someone in a care home, is one made in good faith which simply can’t be kept a lot of the time.

We wouldn’t keep that promise to someone terminally ill with something else, who was in need of specialist hospice care to keep them safe and pain-free. Why would we think something different applies to a person with dementia?

As much as society tries to trick us into believing it’s just a social or care-based condition, it’s a medical condition and disease like any other. It will usually reach the point of needing specialist care beyond anything that can be provided by family.

Years ago, after my paternal granny went into a care home, both of my parents told us that we shouldn’t ever feel guilty about doing the same for them. Of course now they’re in their 80s and Mum has dementia, it’s their biggest fear. Life changes around us. All we can do or say, is our best at any given moment in time. And what that looks like will change as well.

I remember well my mum saying to me,quite out of the blue, that I must put her in a home if or when the time came she needed care. She also added that if she kicked and screamed about it ,that I had to ignore her. That she was telling me now as her real self.
At the time I thought it was an odd thing to say as she was in her fifties but I'm glad she did and I've said the same to my daughter.

 

[maggie6445]

Sadly its more than that - I have so much I cant face dealing with and living her alone while Mum deteriorates in a hospital is killing me literally and physically. Can stress pop you off?

I'm sorry that you are feeling so hopeless at the moment. Please see your GP and ask if counselling would be helpful. My daughter has just had some following a miscarriage and she has found it really helpful.
Talking things through with someone trained to help you will put things into perspective.
Look after you x

 

[canary]

Sadly its more than that - I have so much I cant face dealing with and living her alone while Mum deteriorates in a hospital is killing me literally and physically. Can stress pop you off?

Yes, it can increase the risk of stroke and heart attack and lowers the immune system

I have been where you are now. Please go and see your GP. I found a course of antidepressants gave me the space to put in place other things to help me

 

[Bunpoots]

Hi @FlyingNut

The hospital social worker will probably find your mum a “bed to assess” in a carehome. This would give you 4-6 weeks where the care placement will be paid while you can decide what the next steps will be.

If you’re over 60 I believe the house would be disregarded in any financial assessment as it has been your home for some time now or if under 60 a discretionary disregard could be applied.

I too have been where you are now and I found that having a look for suitable carehomes and getting a real idea of costs helped. It also reassured me to see that dad would be well looked after when I could no longer cope.

The Dementia Support helpline is also available if you want to speak to someone 0333 150 3456

 

[Rainfalls]

Hi FlyingNut,
I feel for you, the whole system stinks so you are not alone and it's not your fault. If feeling low please try to get some professional help for your mental health, you can phone 111 for mental health emergency or contact your GP.
I think it's a disgrace that you and many other carers face loosing their home on top of everything else. Maybe contact CAB regarding the house, there is supposed to be a discretionary property disregard that can be applied for to protect family carers from loosing their home and becoming homeless, but it is unfortunately only discretionary.
I have been caring for my mum for 7 years and unfortunately also have the worry of knowing the home will be lost and I may become homelesss in the future.

 

[sue31]

Hi,

I'm in probably no different a position to many others on here but I'm at my wits end and don't know what to do or how to get through what the next few weeks will bring.

Long story short, I have lived in my parents home since they bought the house late in life and my 'bed & board' paid to them helped fund their mortgage payments. In November 2021 my Dad died suddenly leaving me as sole carer for my mum who has terminal bowel cancer (with a stoma and anal bleeding from the tumour now requiring nursing care she can no longer attend to herself) and dementia. Under his will his 50% of the house passes to me but probate is yet to be finalised.

We have muddled by with me caring for mum for years but about a month ago my mum had a fall and split her head open necessitating a trip to A&E and an admission to hospital where she has been ever since. Whilst her Dementia was worsening with increased confusion and delirium prior to the fall, the 36 hours in A&E prior to her admission did not help and it was off the scale for the next couple of weeks. Unfortunately the ward mum is in is full of bed bound patients with no stimulation of any sort and on my daily visits I saw mum's mobility go from someone who walked in to someone unable to get from the bed to the chair unaided. On my daily visits I have taken her for a walk and I'm pleased to say she has regained 90% of it back to the extent that she's now wandering all the time and generally making a nuisance of herself both day and night.

After 3 weeks I'm told that medically she has now reached her baseline in their opinion and the initial diagnosis of delirium has been amended to 'confusion' as whilst it was delirium she was stuck between social services arguing she was the responsibility of the NHS and vice versa. She has been referred to the complex discharge team and I'm told that she has been referred to social services who will determine a suitable care package for her. I was assured that I would be consulted and involved in a meeting with the medical and social services team (with an advocate if I wanted) before any plans were decided but I was told tonight that social services have already been to the ward to see her.

As mum is now she is almost back to where she was prior to her fall but she does display very odd behaviours and her constant wandering and confusion has resulted in the medical team opining that she needs 24/7 care and would be unsafe to go back to her home where I live with her. Mum has savings above the £24K threshold and she own half the house so will almost certainly be assessed to be a self funder. My nightmare therefore is that if they 'force' her to go into a home, with the fees of circa £10K per month I am being quoted, they will soon burn through her money and I'm told will probably put a charge on her share of the house which I would then have to sell in order to pay this when mum dies.
Mum has been assessed and declined for CHC Fast Track as whilst her prognosis is 'poor' they have opined that she is not 'end of life' yet and as she is eating and drinking was considered unlikely to die in the next 12 weeks!

I am therefore stuck in limbo as Mum knows she is not at home and every night begs me to take her home and wants to know why I'm doing this to her. I feel very guilty about her spending her finite time trapped in a hospital ward that would drive anyone mad. I have asked if I could take her home for a day to see how she fares at home pre-discharge but I'm told this is not possible. Her nurses tell me that she wanders all night and can't be left so if I did push to get her discharged to me then on my head be it. I am struggling not to lose my full time job and I cant stay awake all night to supervise her so if she is at home she will have to be left alone for parts of the day which they say is unsafe.

What options do I have here, can I block her discharge if I do not agree with what they propose? Should I stop being selfish and devote myself to her for what time she has left (i.e. give up my job to become her full time carer but even then I can't do 24/7) and having multiple carer visits will make living here with her untenable.

I am facing life changing health issues ahead too and I am so overwhelmed with mental health problems at the moment that I am barely functioning and not moving anything forward. Quite frankly the option of not being around to have to deal with this is becoming an attractive one and I think maybe the best as it will remove any issues about the house etc.

Has anyone got any hints or ideas what I can do or should I step away and let SS look after mum without the issues that me being around brings? Can I hold out for CHC and refuse to pay for mum's care in whatever package the SS & NHS deem appropriate?

The killer is that I always promised mum and dad that I'd never consider a home while she had some cognition and there's the rub, she's bad about 60% of the time and like tonight for example, demonstrates challenging and aggressive behaviours, but the rest of the time she is lucid. The thought of not allowing mum back to the dead and lifeless house I now find myself living alone in is heart breaking and is not a life I think I can get through alone (my partner of 9 years dumped me on NYD due to the mental health issues the last two years of caring has caused me).

Should I keep pedalling or give up?

Was in a very similar position with mum, the house, hospital too. Awful dilemma!!
They discharged mum to what they call a D2A placement. Discharge to Assess. As I said she couldn’t go home & the careers we had been paying for wasn’t working - due to her not letting them🤦‍♀️
They get up to 6 weeks free in a care home to monitor & let you know what care she will need.

Refuse to discuss your mums or yours financial position until this is done.

Once she’s in the home for assessment & they let you know her needs you can ask the home to refer her for a CHC assessment. Make sure they tell you when the social worker will attend as they can gloss over what the needs actually are. You know your mum best.
If half the property is yours (or will be once you have probate & notify land registry) plus if you are over a certain age it will be disregarded in any future assessment.
It’s a hard slog & heartbreaking knowing it’s best they don’t return home - much as they and you want them to - it’s accepting it’s not possible & being their voice to get the care they need.
Lots of advice on many posts here.

 

[SeaSwallow]

Hi FlyingNut,
I feel for you, the whole system stinks so you are not alone and it's not your fault. If feeling low please try to get some professional help for your mental health, you can phone 111 for mental health emergency or contact your GP.
I think it's a disgrace that you and many other carers face loosing their home on top of everything else. Maybe contact CAB regarding the house, there is supposed to be a discretionary property disregard that can be applied for to protect family carers from loosing their home and becoming homeless, but it is unfortunately only discretionary.
I have been caring for my mum for 7 years and unfortunately also have the worry of knowing the home will be lost and I may become homelesss in the future.

Hello @Rainfalls and welcome to the Dementia Support Forum. Thank you for offering help to FlyingNut, I am sure that it will be appreciated. If you want to discuss your own situation you might find it useful to start a thread in the - I care for a person with dementia - area. I have attached a link below.

I care for a person with dementia

This forum is for people who are involved in the care of a person with dementia.

forum.alzheimers.org.uk

 

[soguilty]

Sadly its more than that - I have so much I cant face dealing with and living her alone while Mum deteriorates in a hospital is killing me literally and physically. Can stress pop you off?

Hi Flying Nut
I have a mother with worsening dementia and I understand at least a little of how you're feeling and how horrendous your situation is.
But, I am very concerned with how you are feeling - so desperate - and how you said earlier you 'wished you hadn't woken up this morning'.
The advice and help on this site is brilliant, but, please consider ringing the Samaritans as another source of support solely for YOU. They are a wonderful outlet, purely a listening service, where you can offload and hopefully feel eased and a little calmer. They are literally lifesaving.

Look after yourself. You can't help your mum if you are going under.
Take care
xxxx

 

[FlyingNut]

Thanks again all. I think upon reflection its better to just withdraw from this all and leave SS to look after mum without me playing any further part as I only make things more complicated.

 

[canary]

Thanks again all. I think upon reflection its better to just withdraw from this all and leave SS to look after mum without me playing any further part as I only make things more complicated.

I think that is sensible - you need to look after yourself at the moment. When I reached that point SS found emergency respite for OH and I could recover and decide what to do from there