ALISONGS' DIARY

[Alisongs]

Not trying to leave the ward itself doesn't mean he isn't however deprived of liberty and requiring the protection of the DOLS safeguards. You or I could be in hospital and walk out if we have capacity to make that decision. As could you husband without the DOLS, which clearly would place him at risk if he lacks the capacity to consent to his hospitalisation. The DOLS is intended to protect the right to liberty of people living with impairment, I think on that score we seem to agree PALS may be useful if needing some support and assistance. Am unsure why having a DOL would be of concern in hospital to be honest apart from the security aspect and having the DOL authorisation doesn't give carte blanche for assault from security. Look after yourself first and foremost x

Bill does not have medical capacity so cannot self discharge. He is not objecting to treatment or being where he is. He has a right not to be assaulted by Security if he does try to leave. See post timed 9.30pm

 

[Alisongs]

The DOLS does not mean security can or will manhandle him, the ward will determine if there is a need for DOLS. Please try and rest x

Bill does not have medical capacity so cannot self discharge. He is not objecting to treatment or being where he is. He has a right not to be assaulted by Security if he does try to leave. See post timed 9.30pm

 

[Alisongs]

The DOLS does not mean security can or will manhandle him, the ward will determine if there is a need for DOLS. Please try and rest x

OH and I were dragged to the ground and he was given Chinese burns to make him let go of me when we tried to leave hospital during his previous stay. I was no aware even of what a DOLS was, nor that he had one!
We opted to leave because of increasing worries that his 3 conditions and diet were being erratically 'managed' and I'd actually done a lot better at home. Last straw was a strange, new discharge worker flatly telling him he was going to a distant nursing home next day for assessment for a permanent place. Not as per two week old discharge plan agreed with someone else. We left, were assaulted by Security to stop us. Something to do with "dolls".
I rang my solicitor, she explained what a DOLS was and did I have a copy. First I d ever heard of one.
They'd put a DOLS on him for walking round the ward fully dressed, talking to everybody and asking to go home.
Three days earlier.
I was named as person of interest but never consulted or advised.
I was reluctantly given a copy of the DOLS when I pointed out that my solicitor was listening and had asked for it.
It was full of factual errors, not least because I had not been consulted.
My fears of abuse of process and abuse by Security are well founded.

 

[dq79]

OH and I were dragged to the ground and he was given Chinese burns to make him let go of me when we tried to leave hospital during his previous stay. I was no aware even of what a DOLS was, nor that he had one!
We opted to leave because of increasing worries that his 3 conditions and diet were being erratically 'managed' and I'd actually done a lot better at home. Last straw was a strange, new discharge worker flatly telling him he was going to a distant nursing home next day for assessment for a permanent place. Not as per two week old discharge plan agreed with someone else. We left, were assaulted by Security to stop us. Something to do with "dolls".
I rang my solicitor, she explained what a DOLS was and did I have a copy. First I d ever heard of one.
They'd put a DOLS on him for walking round the ward fully dressed, talking to everybody and asking to go home.
Three days earlier.
I was named as person of interest but never consulted or advised.
I was reluctantly given a copy of the DOLS when I pointed out that my solicitor was listening and had asked for it.
It was full of factual errors, not least because I had not been consulted.
My fears of abuse of process anare well founded.

Hi Aliscongs, apologies if there are things overlooked or previous clarifications. I haven't exhaustively read this thread only dipping in and out. Clearly there's backstory and dare I say possibly mistrust based on what's happened in hospital before, which is understandable. Please do seek input from the PALS team, ward manager, council DOLS team if you have any concerns or if you disagree. Ultimately the DOLS is there to safeguard your husband's right to liberty in hospital and restrict it lawfully if he is deemed to lack capacity regarding his care by the ward - the lack of objection to being where he is or to his treatment is not itself relevant but what actions would staff do to maintain his safety were he to leave.

 

[Alisongs]

4 July 7am
Here's my high blood sugar and ketones protocol for OH.
Have a bag ready of all OH's and my needs for a day's stay in A and E.
If he has high ketones, don't wait for an unfamiliar and disconcerting ambulance transport and crew.
Advise Community Nurse.
Advice Note on door for any ambulance that arrives.
Use a familiar and trusted taxi company and I'll go with him with the bag(S) of needs.
Take a drink so OH is hydrated to lower ketones on way to A and E.
Much more organised and far less disruptive for a dementia and Parkinsons victim.
Small suitcase packed and Advice Note for door written. And photocopied in case of repeat trips
*****
Our house is full of stuff dedicated to his needs as everyone gives us more and more and says I have to keep for him. They won't.
OH has no medical capacity. Lock box for meds about 6 x 8 x 12 inches. Large open cardboard box of Community Nurse paraphernalia. Bag of discharge and meds paperwork for my benefit with bottles of the meds I have to administer at 7am as Support Workers won't start until 8am.
Also daily record book of his sugar levels that I am doing so I can calculate his meals and if he's too high or too low and deal with it 247.
OH has no medical capacity. 999 have told me not to call unless he's unconscious, claiming he won't die. ( Let's not mention potential brain damage)
111 won't send anyone at all at night.
Hospital diabetic clinic out of hours emergency number only manned Monday to Friday 9 to 4.
Box of biscuits and jelly babies for emergencies. Can't just have one of each as no idea when I can get more shopping. Delivery unreliable as items can be 'out of stock'
Bag of support worker and social services bumf.
All behind door in smallest bedroom as OH lacks medical capacity and his dementia usually means 'out of sight out of mind'.
Lockable cashbox top fridge shelf in kitchen for insulin pens. Out of sight out of mind?
Six further bags and boxes in another small bedroom, of more spare supplies that keep being supplied. Out of sight out of mind?
OH has no medical capacity. We have the largest lockbox available....
OH's original discharge plan from hospital was supposedly designed to absolve me of any medical involvement.....You saw it here first.......
Let's see what today brings.
Solicitor coming for my LPAs. Hope to make a plan to get OH's done, even in hospital.
Doctor supposed to give me a welfare call.
Sister should receive the signed probate and house selling papers and my IDs
*
Made a plan for me to relax in the bath. Every morning. Bliss! 🛀
*
Just found dried up orange peel hidden amongst bag of dead batteries awaiting recycling.... OH obviously aware he's not supposed to binge or eat between calculated meals and snacks. And last night he said he's only eating what he's given. Can't help himself in hospital. Still very much self aware
*
10.30am
Hospital Dementia Support Worker rang me. From their own visits to OH, he is definitely and constantly asking to go home so a new DOLS is indicated.
Why haven't the nurses said this? Just as well I'm not going in, not giving OH cues he might be discharged.
Repeated concerns over use of Security to prevent patients leaving ward or hospital, as Security use wounding force to control vulnerable patients (and visitors....) Assault is illegal. That's my concern.
It will be reiterated in notes that use of Security personnel and tactics is not appropriate

 

[Alisongs]

Hi Aliscongs, apologies if there are things overlooked or previous clarifications. I haven't exhaustively read this thread only dipping in and out. Clearly there's backstory and dare I say possibly mistrust based on what's happened in hospital before, which is understandable. Please do seek input from the PALS team, ward manager, council DOLS team if you have any concerns or if you disagree. Ultimately the DOLS is there to safeguard your husband's right to liberty in hospital and restrict it lawfully if he is deemed to lack capacity regarding his care by the ward - the lack of objection to being where he is or to his treatment is not itself relevant but what actions would staff do to maintain his safety were he to leave.

They call Security if a patient has a DOLS...... Less safe than no DOLS.
PALS are now dealing with concerns from his 8 week stay.

 

[maisiecat]

You mention that your husband does not have medical capacity but you are doing POA because he still has legal capacity.
Are the two seperate things? I always assumed that they were grouped in together about lacking capacity to see an issue in the round and any eventualities that might arise.
Might it be problematic if he does a POA in a medical setting where he has a DOLS and is known to not have medical capacity

 

[Alisongs]

You mention that your husband does not have medical capacity but you are doing POA because he still has legal capacity.
Are the two seperate things? I always assumed that they were grouped in together about lacking capacity to see an issue in the round and any eventualities that might arise.
Might it be problematic if he does a POA in a medical setting where he has a DOLS and is known to not have medical capacity

No. Each capacity is dealt individually by the relevant expert on a per occasion basis. Solicitor cannot determine medical matters capacity. Medical staff cannot determine legal matters capacity. And so on.
Social Services determine capacity, by a potentially at risk person, to refuse Social Services intervention.
(Last year, Mum kept refusing to go into a care home. Told them to leave. They left. Family frantic, couldn't manage. Finally agreed to care home at 103, four months before she died. Admitting diagnosis: Full blown end stage dementia.)
Solicitor is a specialist in Legal matters capacity, DOLS and Court of Protection legislation. My OH has rights that I will make sure are protected and maintained

 

[dq79]

They call Security if a patient has a DOLS...... Less safe than no DOLS.
PALS are now dealing with concerns from his 8 week stay.

To prevent the patient leaving in their best interests if they are deemed to lack the mental capacity to understand the risks in leaving the ward. Would you have concern if your husband did leave the ward, with purpose or not, would he be safe, or is it the fact that the DOLS prevents he or you from discharging him in the event of you wanting him to leave that is of concern? I ask that neutrally and without judgement, The ward ought to be using all proportionate and least restrictive measures before calling securitybeing on the DOLS does not give carte blanche for assault. If hospital stay goes beyond the period the hospital can self authorise the DOLS for he'll get an independent assessment from a best interest assessor and a mental health assessor, they'll determine if the DOLS criteria is met and if so will appoint someone to represent his rights in that plus will give access to court process if objecting to the DOLS. Hope PALS are supportive and you get some rest x

 

[Alisongs]

To prevent the patient leaving in their best interests if they are deemed to lack the mental capacity to understand the risks in leaving the ward. Would you have concern if your husband did leave the ward, with purpose or not, would he be safe, or is it the fact that the DOLS prevents he or you from discharging him in the event of you wanting him to leave that is of concern? I ask that neutrally and without judgement, The ward ought to be using all proportionate and least restrictive measures before calling securitybeing on the DOLS does not give carte blanche for assault. If hospital stay goes beyond the period the hospital can self authorise the DOLS for he'll get an independent assessment from a best interest assessor and a mental health assessor, they'll determine if the DOLS criteria is met and if so will appoint someone to represent his rights in that plus will give access to court process if objecting to the DOLS. Hope PALS are supportive and you get some rest x

Bless you. Thank you.
Ward day sister said she wants DOLS in place in case OH mentions or tries leaving ward, so she can call Security.
Security have previously manhandled and assaulted and visibly injured OH both on and off the ward.
That's illegal. That's the problem.

 

[sdmhred]

“The ward ought to be using all proportionate and least restrictive measures before calling securitybeing on the DOLS does not give carte blanche for assault.”

you’re absolutely right @dq79 …but unfortunately this is where hospitals and other facilities lack the trained staff and time to follow this measure….which in 99% of the time is likely to be effective too. I have witnessed a DOLS patient being stopped from leaving on 2 occasions. It was heavy handed and for you and I we would have very much felt assaulted and normal staff often step back to allow the security to do it as they’re not trained enough.

It is another example i think of where the system which is designed as you say to protect the vulnerable- actually can often do the opposite,

🙏🙏🙏 Bill continues to be settled and doesnt try to leave so this time all this is in theory only 🙏🙏🙏

 

[Alisongs]

“The ward ought to be using all proportionate and least restrictive measures before calling securitybeing on the DOLS does not give carte blanche for assault.”

you’re absolutely right @dq79 …but unfortunately this is where hospitals and other facilities lack the trained staff and time to follow this measure….which in 99% of the time is likely to be effective too. I have witnessed a DOLS patient being stopped from leaving on 2 occasions. It was heavy handed and for you and I we would have very much felt assaulted and normal staff often step back to allow the security to do it as they’re not trained enough.

It is another example i think of where the system which is designed as you say to protect the vulnerable- actually can often do the opposite,

🙏🙏🙏 Bill continues to be settled and doesnt try to leave so this time all this is in theory only 🙏🙏🙏

That's why I'm staying away, so OH doesn't interpret a visit as a cue to leave.
All three nurses I have spoken to, say he's not approaching the exit (off a side corridor that leads to the main ring of bed bays and facilities).
OH just wanders round this main ring of facilities to keep himself entertained.
He doesn't even know that there's an exit button on the wall in the exit corridor.
His diabetic control is stabilising.
I don't want his conditions upset so he has to stay in longer

 

[Alisongs]

7.15pm 4 July. Summary verdict of today.
Bill much better, diabetes stabilising but not good enough yet to make discharge plans. Everyone well aware that assault by Security is not an appropriate measure for a vulnerable patient to be prevented from leaving or being returned to the ward.
OH has apparently been annoying everyone by repeatedly asking to go home.
OH also engrossed in today's election coverage in the media, engaging everyone in discussions (and probably boring their pants off...). That's what you get with a dementia victim who has a degree in Politics and Government, and stood for election as an independent MP three times
Solicitor has done my LPAs. Waiting for OH to be discharged before completing his. Going into the hospital to discuss and sign him up might stress him and send his diabetes haywire again.
Definitely going bonkers myself.
Put down my brand new cheque back to make a phone call. Gone. Disparue. Vamoosed. House now a lot tidier, but no cheque book.
And the promised doctors callback hasn't happened yet.
Probably going a Carers' Café tomorrow.

 

[Alisongs]

5 July 3am
So knackered after not finding chequebook, I had no oomph for anything. In bed by 9, dead asleep by 9.30pm. Jerked awake by loud crashes, bangs, light flashes before 10. That stopped as soon as.... Put it down to some miscreant Fourth of July celebrant or Election misadventure.
Did briefly think someone had put fireworks through letterbox. Too tired to care or investigate.
Forgetfulness, fatigue, disorganisation, ennui, inappropriate behaviours, constant underlying fear, distress and depression. Awake after 5 hours sleep. Groundhog day.
Was Bill Murray's film Groundhog Day inspired by dementia?
The Carer's worst nightmare. Flogging yourself almost to death, no life of your own, then you get dementia.
Two years in prison for assaulting an emergency worker will get me out of this.
In the meantime I'll take a bag of stuff to a charity shop on my way to the Carer's Café.
Seems like too much effort.
No idea where chequebook is. Don't care. It's in the house or the dustbin. I can get another if it becomes an issue.
Back aching and stomach churning from ingrained fight or flight mode.
Waiting for light, will start the day with a bath, take junk to charity shop and go to Carer's Café.
Why is my life defined and confined by OH's dementia, diabetes type 1 and Parkinsons even in his absence?
And there's a whole load of rotting salad stuff etc in the fridge as he's in hospital and I've been to busy or frazzled to eat. Got to throw that out too. Constantly wasting money on things OH then won't or doesn't eat or drink.
And the doctor didn't ring me yesterday.
Not heard anything from Carers or Community Nurses even though I kept them informed about OH.
It was the Admiral Nurse told me we've been allocated a Social Worker. I've heard nothing.
Bill's appointments and support all now on hold until he's out of hospital.
Everyone has cast me into limbo, then I have to contact them when OH is out of hospital.
My so called life, my needs, my wants and hopes and fears, my time don't matter.
I'm the mad puppeteer behind the scenes keeping everything going, and the audience has scarpered while the principal character is off stage.
I don't have my own life, and my assigned raisond'etre is so far off everybody's back burner it's fallen down the back of the cooker
#carersdontmatterifthecareeisnotathome
*
I'm being careful of the whispers and rumours and earwigs on OH's ward. During his Spring admittance, we chatted on his mobile as I hadn't been to visit that day.
Due to Ward noise, and OH's declining comprehension and conversation skills, he misheard me say " I haven't been anywhere all morning" as " I've been in A and E all morning". OH panicked and blurted out what hed heard for the whole ward to heard. I corrected him, reassured him and conversation moved on. Well...... Several hours later, when I was already in bed at home, 8 miles from the hospital, I got a welfare check by the police. Over the following several days, the nurses on the ward were wanting to know if I was alright after my A and E visit. Must be in OH's notes. Beware hospital inaccuracies and presumptions and intrusion. Funny but distressing *

 

[Alisongs]

5 July afternoon. Went to Dementia Carer's Café. Nice people, nice to chat, takes 1.5 to 2 hours on 2 busses one way. Can't do that when OH comes home. Went to bank and post office.
Left junk at home will take to charity shop tomorrow.
Couldn't find a new pair of the track shoes OH likes for his misshapen feet.
Got to find time for Attendance Allowance forms before OH comes out of hospital.
It'll be Carer's Luck that the Hospital chooses this weekend to start weekend discharges.
Even when OH is not home he has to come first
*
On the plus side I sprayed weedkiller on the patio this morning, and the weeds have! obliged.
Also found some cheap, dishwasher proof, recycled plastic soup bowls in a kitchen shop. Dark blue but smaller and much lighter than our existing earthenware . Everything I do comes back to OH's declining potential. Not quite..... Treating myself to roast duck for lunch. OH can't have that as protein plays havoc with his Parkinsons meds

 

[Bevhar]

3 July 7.30am
I'm not normal any more. I'm stuck 247 365 for Life. OH is only 67 so I've potentially got a longer solitary confinement sentence in my own home, than if for murder
*
Can't get thru to OH's ward, hospital switchboard extensions faulty. Not going to visit, bad mentally for us both. Has to be stabilised.
*
So I'm going to make myself go out and do things that used to be normal. I don't look normal. (Black Eyes from losing Battle of the Chest of Drawers last week)
I don't feel normal. I don't know what normal is any more. And I'm on bail for assault on an emergency worker. That's definitely not normal

That’s terrible your on bail unbelievable it all sounds so awful for you Makes me feel bad to moan about my circumstances

 

[Bevhar]

3 July 7.30am
I'm not normal any more. I'm stuck 247 365 for Life. OH is only 67 so I've potentially got a longer solitary confinement sentence in my own home, than if for murder
*
Can't get thru to OH's ward, hospital switchboard extensions faulty. Not going to visit, bad mentally for us both. Has to be stabilised.
*
So I'm going to make myself go out and do things that used to be normal. I don't look normal. (Black Eyes from losing Battle of the Chest of Drawers last week)
I don't feel normal. I don't know what normal is any more. And I'm on bail for assault on an emergency worker. That's definitely not normal

3 July 7.30am
I'm not normal any more. I'm stuck 247 365 for Life. OH is only 67 so I've potentially got a longer solitary confinement sentence in my own home, than if for murder
*
Can't get thru to OH's ward, hospital switchboard extensions faulty. Not going to visit, bad mentally for us both. Has to be stabilised.
*
So I'm going to make myself go out and do things that used to be normal. I don't look normal. (Black Eyes from losing Battle of the Chest of Drawers last week)
I don't feel normal. I don't know what normal is any more. And I'm on bail for assault on an emergency worker. That's definitely not normal

This all sounds awful for you Being on bail must be extremely stressful Can I ask are you younger than your husband I feel bad for moaning reading what your going through x

 

[Alisongs]

This all sounds awful for you Being on bail must be extremely stressful Can I ask are you younger than your husband I feel bad for moaning reading what your going through x

He's 67, I'm 65, he got sent home from work as a Health and Safety risk 3 years ago, about 6 months after tentative Parkinsons diagnosis. We married April 2022, just a few Parky problems but memory dodgy since Lockdown. I got made redundant Autumn 2022 and he couldn't do host mode in front of me 247. That's when I realised how bad he was. I chased all the referrals, dementia diagnosis September 2023. Not even got to his first annual review yet. Lifelong diabetic Type 1. Everything clashing and out of control, hospital can't deal with it all. So what they drop, I carry the can

 

[Alisongs]

I have made tentative enquiries to the home my mum was in last year. Lovely. 100 miles away near my nieces. They'd take him but have a long list. I would be happy if OH ended up there but he might not be! Have to wait until he doesn't really know, is less mobile, probably incontinent. Very sobering. He's still in dementia denial. This slalom ski race is far too fast and complicated.
Went into kitchen to check on roasting duck breast...... Er.... Resting....... Cooker electrics have packed up, we're only repaired in May. Canard au Four Microonde instead.

 

[Bevhar]

He's 67, I'm 65, he got sent home from work as a Health and Safety risk 3 years ago, about 6 months after tentative Parkinsons diagnosis. We married April 2022, just a few Parky problems but memory dodgy since Lockdown. I got made redundant Autumn 2022 and he couldn't do host mode in front of me 247. That's when I realised how bad he was. I chased all the referrals, dementia diagnosis September 2023. Not even got to his first annual review yet. Lifelong diabetic Type 1. Everything clashing and out of control, hospital can't deal with it all. So what they drop, I carry the can

That’s so tough Your so young to deal with all this I’m 70 my husband is 68 he’s not got any other health issues thank goodness I’m a type 2 diabetic which I’m not controlling well I also have high blood pressure & cholesterol & Bad arthritis We make a right pair my husband with his memory & other dementia related problems and me with my mobility problems I’m forever falling which is making life a bit difficult I’m seeing the doctor Tuesday I worry for our eldest daughter as she lives near us She’s a single mother of 8 year old twins & works full time My other daughter lives 2 hours away I’m really getting worried about being a burden to her My own mother died at 70 she looked after her mother & never wanted me (I’m an only child ) to look after her my father passed away 18 months later he was broken-hearted losing my Mum Your husband really has got a lot wrong & you need help from the hospital & other professionals Even though I have my daughters I still feel so alone My husband is not too impacted at the moment He has been put on Memantime Im hoping this will slow things down You get the diagnosis & then sent on your way with no help or advice I have had to find all the support I can Somedays i just feel I don’t want to
go on We we’re doing ok before I fell & broke my hand & cracked my ribs & couldn’t drive I really hope your able to get the help you deserve take care xx