ALISONGS' DIARY

[Alisongs]

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Friday 5 July 6pm
Feel like exploding. Sorry very upsetting call with hospital social worker, want to put OH in a home until blood sugars OK. Almost there.
If they move him he will get more confused and Parkinsons will get worse with stress and his sugars go wrong again.
Hospital never looks at whole picture but only bothers to tell me at 5 on a Friday so they've all gone home and I can't speak to the relevant staff yet I have to their bidding.
I'm not the patient but they interfere with my life 247 365 and they'll just do what they want anyway. Nobody available to be rung or ring me until Monday. Happens every time. I can't be available next week, having repairs done. If I do make time they'll probably cancel ten minutes before just like last time. Spoke to OH, increasingly confused, have not told him anything. I have put him on the list for mums old nursing home in Essex which was lovely. (That's for later on) I do wish hospital considered that families can't just drop everything. Even worse when you have no family to fall back. Does the hospital care? No. Feel like dogpooo under their shoes being wiped off with a sharp stick. And OH's best mate can't be asked to support me. Off on holiday. When I texted I hope you have a lovely time, he replied. We will. Obviously doesn't do irony
Nothing I can do but rant on here

 

[Bevhar]

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Friday 5 July 6pm
Feel like exploding. Sorry very upsetting call with hospital social worker, want to put OH in a home until blood sugars OK. Almost there.
If they move him he will get more confused and Parkinsons will get worse with stress and his sugars go wrong again.
Hospital never looks at whole picture but only bothers to tell me at 5 on a Friday so they've all gone home and I can't speak to the relevant staff yet I have to their bidding.
I'm not the patient but they interfere with my life 247 365 and they'll just do what they want anyway. Nobody available to be rung or ring me until Monday. Happens every time. I can't be available next week, having repairs done. If I do make time they'll probably cancel ten minutes before just like last time. Spoke to OH, increasingly confused, have not told him anything. I have put him on the list for mums old nursing home in Essex which was lovely. (That's for later on) I do wish hospital considered that families can't just drop everything. Even worse when you have no family to fall back. Does the hospital care? No. Feel like dogpooo under their shoes being wiped off with a sharp stick. And OH's best mate can't be asked to support me. Off on holiday. When I texted I hope you have a lovely time, he replied. We will. Obviously doesn't do irony
Nothing I can do but rant on here

That’s awful it’s almost as though they deliberately do this at the weekend so you have limited options Hope your weekend will be calmer for you & that your maybe able to take yourself out for a coffee I love my husband dearly he’s the love of my life I know some people on here have not had happy relationships before dementia I cannot imagine how awful it is for them I struggle & get impatient & bad tempered I always feel sad afterwards because he has always been there for me especially when I lost my parents I hope your weekend will be less stressful & you can regroup xx

 

[Alisongs]

That’s awful it’s almost as though they deliberately do this at the weekend so you have limited options Hope your weekend will be calmer for you & that your maybe able to take yourself out for a coffee I love my husband dearly he’s the love of my life I know some people on here have not had happy relationships before dementia I cannot imagine how awful it is for them I struggle & get impatient & bad tempered I always feel sad afterwards because he has always been there for me especially when I lost my parents I hope your weekend will be less stressful & you can regroup xx

Sorry just feel sick and totally depressed. I am going to bed and hope I don't wake up. Got to be better than this nightmare..... One small spark of hope. Dementia Carer's Café is held in a Charity Cancer Support Centre. I spoke to a lady who actually works in the Palliative Care department at the hospital, I've been trying to get a referral for months, OH's specialists refuse as he's not end-of-life. The Palliative Care Department mission statement is to make living palatable for those with chronic not just fatal conditions. They deal holistically and can appoint someone who will coordinate care of all three conditions, diabetes type 1, Parkinsons and dementia. She's done the referral and spoken to the in patients team. Won't be anything until next week. Meantime, sick, depressed and going to bed

 

[Bevhar]

Sorry just feel sick and totally depressed. I am going to bed and hope I don't wake up. Got to be better than this nightmare..... One small spark of hope. Dementia Carer's Café is held in a Charity Cancer Support Centre. I spoke to a lady who actually works in the Palliative Care department at the hospital, I've been trying to get a referral for months, OH's specialists refuse as he's not end-of-life. The Palliative Care Department mission statement is to make living palatable for those with chronic not just fatal conditions. They deal holistically and can appoint someone who will coordinate care of all three conditions, diabetes type 1, Parkinsons and dementia. She's done the referral and spoken to the in patients team. Won't be anything until next week. Meantime, sick, depressed and going to bed

So sorry I totally understand Many nights i
Go to bed praying to not wake up Your having it so much tougher than i am Life can be so unfair Hope you manage to get a good nights sleep x

 

[Alisongs]

11pm Friday 5 July
So I have slept. Very deeply. For a whole two hours.
Woke up with a headache, churning stomach, full fight or flight mode, wringing wet with sweat. Tinnitus so loud Ivve gone deaf.
You're never too old for a hot flush. (That is unfortunately true as female hormones fluctuate under stress after menopause. Mum had flushes in her 90s).
I have been cornered and I cannot do anything.
No legal right to have my husband home with me. He's effectively been confined at His Majesty's pleasure.
What about my human right to a family life?
I am going to proceed as if hospital social worker had not rung me.
If everyone does take the weekend off, they'll be no further forward Monday morning.
(But I expect I'll find they have been working overtime)
So, junk to charity shop and see what else can go to be recycled in Monday's refuse collection.
Complete Attendance Allowance forms as if OH at home and not readmitted.
Get a load of shopping done for myself.
Have supplies for OH already, as he wasn't here to eat all last week..
Try to get him a new jacket and trainers to replace what hospital has probably lost.
Try to get hold of GP and Palliative Care and Community Nurses Monday? Not contactable until then.
Got to be at home during the week for house repairs.
If they want OH in a nursing home it has to be the closest to home, ie within 2 miles and on our bus route. Check this out Monday as I know they take hospital cases. Make sure they can take OH even if we have to pay? Self funding seems to trump everything. Hospital DOLS will lapse when OH leaves hospital, especially if he comes out by a taxi I book. Cannot chase all over the show spending 4 hours a day going to and fro, let alone time with OH.
If OH ends up in the back of beyond, it would be kinder to kill him off as he'd be ever more confused, and blood sugars and ketones through the roof and permanent Parkinsons dyskinesias.
OH could have already suffered brain damage from out of control sugars and ketones in hospital earlier.
I am going to have to be at any Best Interests Meeting to witness what goes on. Must get Palliative Care rep in there too to cover coordinated care needs.
It's going to be a busy weekend.
And OH is not even here and the hospital has violated my freedom of movement as well.
Where's the county social worker? The community nurses?
#carersdon'tmatterifthecareeisnotathome
Sleep? Rest? Relax? Regroup? How?
OH yes and get the cooker repaired. Again

 

[Alisongs]

So sorry I totally understand Many nights i
Go to bed praying to not wake up Your having it so much tougher than i am Life can be so unfair Hope you manage to get a good nights sleep x

https://media.tenor.com/JtDkh1NgMKsAAAAM/insomnia.gif

 

[Alisongs]

Saturday 6 July 1am
There is a Specialist in Dementia, Parkinsons and Adult Care in another NHS area who shares my name! Cannot find an email address but have tried to be put in touch with her through one of the websites associated with her as I need support throughout the Discharge process. What do you think? I'd rather spend a fortune protecting Bill's total needs and both our rights, than pay for care that is not holistic
Have found following on Reaearch thread

Family Carers experiences of hospital admission research​

have contacted the researcher

 

[My Mum's Daughter]

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.

I'm confused. On this post you're considering putting your husband in a home 100 miles away but on your most recent update, he needs to be on a bus route and no more than 2 miles away.

As you have pointed out on numerous occasions, he's the responsibility of social services so whilst you may have some say in his placement, the finally decision is theirs.

Turning back to the placement in your Mum's former home and assuming that your husband has no means to cover an indefinite stay in a home, have you checked that social services will cover out of county fees? I've tried this as there was nothing suitable locally but despite being self funding for a considerable amount of time, I was told that cross county funding could present future problems if/when, the pot runs dry.

In placing your husband in a nursing home, you may also have to face a best interest meeting with doctors and a social worker. They may or may not, question if placing your husband 100 miles away from his loving wife, is actually in his best interest, especially as you're reliant on public transport.

 

[Alisongs]

I'm confused. On this post you're considering putting your husband in a home 100 miles away but on your most recent update, he needs to be on a bus route and no more than 2 miles away.

As you have pointed out on numerous occasions, he's the responsibility of social services so whilst you may have some say in his placement, the finally decision is theirs.

Turning back to the placement in your Mum's former home and assuming that your husband has no means to cover an indefinite stay in a home, have you checked that social services will cover out of county fees? I've tried this as there was nothing suitable locally but despite being self funding for a considerable amount of time, I was told that cross county funding could present future problems if/when, the pot runs dry.

In placing your husband in a nursing home, you may also have to face a best interest meeting with doctors and a social worker. They may or may not, question if placing your husband 100 miles away from his loving wife, is actually in his best interest, especially as you're reliant on public transport.

Got to have plans A to Z not just plan B. Yes there is going to be a Best Interests Meeting but these always seem to put the best interests of the hospital first, ignoring rights to a family life and my husbands holistic needs regarding three chronic conditions.

I have experience of and confidence in the home 100 miles away and would be prepared to move back to the area I grew up in, where I have family.
I haven't been given any information by the hospital social worker other than I'm expected to attend a meeting when it suits them.
If my husband can't be immediately local, he can be where I and other family members can get to.
Plan A is come straight home.
As the hospital and social services have assumed responsibility for my husbands welfare due to his complex needs and the DOLS, and seem determined to ignore our rights to a family life and my husbands needs for holistic care for three chronic conditions, I do not know why I am being included in the Best Interests and Discharge process. It is only to tick a box to say next of kin has been included. (And ignored and insulted). Also se my post of 1am 6 July

 

[jennifer1967]

Got to have plans A to Z not just plan B. Yes there is going to be a Best Interests Meeting but these always seem to put the best interests of the hospital first, ignoring rights to a family life and my husbands holistic needs regarding three chronic conditions.

I have experience of and confidence in the home 100 miles away and would be prepared to move back to the area I grew up in, where I have family.
I haven't been given any information by the hospital social worker other than I'm expected to attend a meeting when it suits them.
If my husband can't be immediately local, he can be where I and other family members can get to.
Plan A is come straight home.
As the hospital and social services have assumed responsibility for my husbands welfare due to his complex needs and the DOLS, and seem determined to ignore our rights to a family life and my husbands needs for holistic care for three chronic conditions, I do not know why I am being included in the Best Interests and Discharge process. It is only to tick a box to say next of kin has been included. (And ignored and insulted). Also se my post of 1am 6 July

the social workers tend to pay for their own areas and and the postal address that he was last and the home that best suits his needs. at least you are included for best interests and what will happen next. its no good placing in a home that cant meet all his needs because he would be moving again to another home. sometimes, its better to work with social worker rather than fight against them. if you have a problem with a social worker, you need to complain.
you say you dont want to visit, has his needs increased since you saw him last? sometimes they go down when taking different meds.

 

[Alisongs]

the social workers tend to pay for their own areas and and the postal address that he was last and the home that best suits his needs. at least you are included for best interests and what will happen next. its no good placing in a home that cant meet all his needs because he would be moving again to another home. sometimes, its better to work with social worker rather than fight against them. if you have a problem with a social worker, you need to complain.
you say you dont want to visit, has his needs increased since you saw him last? sometimes they go down when taking different meds.

They're only working on get his blood sugar and ketones levels down. Not quite stable yet. Should not have been discharged last time as he was not remotely stable.
It is not that I don't want to visit, I am not visiting so he doesn't think it's a cue that he's going home. He would get upset and ruin any progress. Going home is apparently what he constantly asks about but is not trying to leave, he wants to get better. The ward staff are aware and agree my absence is more productive than any visit.
It's a complex situation where his Parkinsons and diabetes make each other worse and his dementia means he cannot do his own insulin jabs or work out correct carb and protein loads for each meal to keep both diabetes and Parkinsons under control. Further complicated as the hospital only looking at his diabetes. The specialists have all told me the separate specialists do not and will not coordinate! (I asked) I have now managed to get a Palliative Care referral they will appoint a coordinator to get his needs coordinated.

 

[Alisongs]

3.30am 6 July. Waiting for daylight to start my day. Blueberry Magnum in bed. Decadent, silly and self indulgent for once. Otherwise OH comes first last and middle even when he's in hospital
***
Finding it impossible to cope with the constant changes of track by the various bodies.
OH only 67 very lively minded when it comes to News, Politics, Government Law etc. Lifelong diabetic did parachuting, potholing, designing and making the stunt Lotus cars for the Roger Moore James Bond films, and helped build the pre production Delorean. Keen DJ in discos and on air.....
He was more or less fine when we married in 2022 little more than a year after a much belated Parkinsons diagnosis. No prognoses , little support, no warnings of complications. Dementia diagnosis September 2023. No support forthcoming from anywhere at all, nobody wanted to know because of 3 chronic conditions, they all pointed elsewhere. Full circle and back again. It was only when I had to give up through sleeplessness and not being able to concentrate to do his jabs right, that he was eventually hospitalised. I refused to do anything medical and believed he'd be put in a home as we'd had no offers of home support. He came home after 8 weeks, with a care package, that hadnt even finished when he was readmitted for unreliable blood sugar levels. Well, he hadn't remotely been stabilised on a new regime before being discharged. The community nurses couldn't and didn't cope. The only solution every offered is.... Nursing home. God knows where as very few can take on all his complications. He's too young, too fit, too intellectual, still continent, still mobile, still enjoys going to the shops, the bank, the barbers. He knows he can't go alone. But he's not mentally, physically or psychologically ready for a nursing home. I cannot in all conscience, however awkward he is, support short or long term nursing home committal. Yet. I know it will come, he's still in denial. But if the force our hands with the DOLS and so called Best Interests he will die, either by suicide or by giving up. A long, slow incarceration would just be a cruel and unusual punishment. When the time is right I have local and more distant nursing homes in mind that would fit in with us both being satisfied he's in the right place that I can visit easily. If they take him away, the authorities will have two deaths on their hands.

 

[dq79]

3.30am 6 July. Waiting for daylight to start my day. Blueberry Magnum in bed. Decadent, silly and self indulgent for once. Otherwise OH comes first last and middle even when he's in hospital
***
Finding it impossible to cope with the constant changes of track by the various bodies.
OH only 67 very lively minded when it comes to News, Politics, Government Law etc. Lifelong diabetic did parachuting, potholing, designing and making the stunt Lotus cars for the Roger Moore James Bond films, and helped build the pre production Delorean. Keen DJ in discos and on air.....
He was more or less fine when we married in 2022 little more than a year after a much belated Parkinsons diagnosis. No prognoses , little support, no warnings of complications. Dementia diagnosis September 2023. No support forthcoming from anywhere at all, nobody wanted to know because of 3 chronic conditions, they all pointed elsewhere. Full circle and back again. It was only when I had to give up through sleeplessness and not being able to concentrate to do his jabs right, that he was eventually hospitalised. I refused to do anything medical and believed he'd be put in a home as we'd had no offers of home support. He came home after 8 weeks, with a care package, that hadnt even finished when he was readmitted for unreliable blood sugar levels. Well, he hadn't remotely been stabilised on a new regime before being discharged. The community nurses couldn't and didn't cope. The only solution every offered is.... Nursing home. God knows where as very few can take on all his complications. He's too young, too fit, too intellectual, still continent, still mobile, still enjoys going to the shops, the bank, the barbers. He knows he can't go alone. But he's not mentally, physically or psychologically ready for a nursing home. I cannot in all conscience, however awkward he is, support short or long term nursing home committal. Yet. I know it will come, he's still in denial. But if the force our hands with the DOLS and so called Best Interests he will die, either by suicide or by giving up. A long, slow incarceration would just be a cruel and unusual punishment. When the time is right I have local and more distant nursing homes in mind that would fit in with us both being satisfied he's in the right place that I can visit easily. If they take him away, the authorities will have two deaths on their hands.

Hi Alisongs, please please contact your GP, crisis line or Samaritans, or even dare I say it present at A&E if you feel unsafe mentally. You sound exhausted and at breaking point. If you were approaching this or exhausted at the point of your husband being admitted to hospital think of yourself now x A placement on discharge is more likely to be of a short term assessment nature, try not to think too far ahead which I know is easy for some random person on the internet to say.

 

[Alisongs]

Doing any if what you suggest would put OH in a home. Probably permanent ly as his conditions would be all over the shop for several weeks.
The whole point is to stop him being dragged between unfamiliar places, to give the best chance of all his conditions stabilising, not just his sugars and ketones.
If one condition isn't stable, the rest fall out of line. Just out of bed after 2 more hours of sleep. Blueberry Magnum did the trick

 

[Alisongs]

This is not sustainable. OH and I being bullied by the authorities. I hope OH dies soon so he gets out of this

 

[Alisongs]

And the GP is shut weekends and failed a phone appointment Thursday afternoon. I do everything I can do, everything I am asked, and OH gets Diabetic KetoAcidosis while already In hospital. I've asked and they've no idea if he's suffered brain damage......Nobody seems to have checked.....

 

[dq79]

Doing any if what you suggest would put OH in a home. Probably permanent ly as his conditions would be all over the shop for several weeks.
The whole point is to stop him being dragged between unfamiliar places, to give the best chance of all his conditions stabilising, not just his sugars and ketones.
If one condition isn't stable, the rest fall out of line. Just out of bed after 2 more hours of sleep. Blueberry Magnum did the trick

However the services involved seem to feel a care home on discharge until blood sugars have stabilised may be in your husband's overall best interests at least in the short term - and playing devils' advocate possibly yours reading back over this thread. Not saying this is right, or that you are wrong... However you're talking about the authorities having one or more deaths on their hands when the things you fear next haven't happened yet - which is extremely troubling and I hope is venting to manage those feelings. What if those fears don't happen.

 

[Alisongs]

Plans A to Z are being considered but I am being left up the Orinoco without a canoe and no proper advice and support for some 64 hours until the hospital staff who are involved in this decision get back to work 9am Monday. Nowhere is open over the weekend.
The social worker "wanted to let me know before the weekend". With no way of getting advice and support. That's another example of poor hospital decision making. Truly appalling.

 

[maisiecat]

I am afraid from my experience hospitals begin to close down on a Thursday evening until Monday morning. Many depts are closed on Fridays. However this does give you Saturday and Sunday now to try and regroup and rest a bit.
It wont be easy for them to find a Nursing home to meet his needs so they are not going to be able to do that quickly.
My husband was nowhere near as complex as yours but has late stage Parkinsons and there was only one that could manage his meds and night time disturbances.
I think it may be worth you talking to some of the helplines, I don't think they can resolve things for you but I sometimes think when we talk about things we find not necessarily solutions but it helps us discard some ideas.
Take care of yourself

 

[Alisongs]

I am afraid from my experience hospitals begin to close down on a Thursday evening until Monday morning. Many depts are closed on Fridays. However this does give you Saturday and Sunday now to try and regroup and rest a bit.
It wont be easy for them to find a Nursing home to meet his needs so they are not going to be able to do that quickly.
My husband was nowhere near as complex as yours but has late stage Parkinsons and there was only one that could manage his meds and night time disturbances.
I think it may be worth you talking to some of the helplines, I don't think they can resolve things for you but I sometimes think when we talk about things we find not necessarily solutions but it helps us discard some ideas.
Take care of yourself

❤️Thank you for very considered and constructive and heartwarming support. Off to the city now to get some errands done. Most helplines not open at weekends either! Distracting myself by getting things done. Very rewarding. Better than waiting for the authorities next idea