ALISONGS' DIARY

[Alisongs]

Oh @Alisongs what an amazing and dedicated champion of your husband you are. He has achieved so much. Do make this available to all the decision makers in the next meeting on his future. It’s an honest and passionate statement of who he was and still is; sometimes, maybe always, people need to be reminded of this. I follow your posts with admiration of the true warrior you are.

Thank you. This is what I intend to say at his Best Interests Meeting. With a portfolio of Dvds, pictures and newspaper articles. OH is frustrated and frustrating, awkward and in need of constant help and support and I'd love to throw in the towel, but we haven't even had the chance to get support mechanisms firmed up We weren't offered any until after his first hospital stay, and he was readmitted just over 4vweeks later. Everything stops while he's in hospital so I can't get things in place until he is home. Can't even get his LPAs signed, and solicitor is satisfied he still has legal capacity. Bank also satisfied he has financial capacity.
I agree my husband no longer has medical capacity. His dementia makes him unable to calculate or self administer injections, medication or an appropriate diet for his diabetes and Parkinsons. If OH only had dementia he would still be at home and would never have had any hospital admissions yet.
But the DOLS subjects both of us to the hospitals interpretation of Best Interests.

 

[Alisongs]

Yes @Alisongs , dementia is no respecter of persons, anyone can get it.
I could list the amazing things that OH has done, the awards he has won and the lectures he has given, but dementia changes everything. This amazing mind is slowly dying and disintegrating, brain cell by brain cell, like a jig-saw with pieces being removed bit by bit until the picture is obliterated

We all want the old person back and our lives to go on the way they always had, but it is not going to happen. This loss of our soulmate and the hopes and dreams for the future causes a lot of grief and anger, but it cannot be changed. I know from your thread that you have some hard choices ahead (not all of them your own). Please go back and read what you have written while he was at home and the way you wished that both he and you were dead.

If my OH did not have diabetes or Parkinsons he'd never have had the first hospital admission let alone the second. His mind is not ready for incarceration. So I cannot and will not support incarceration to watch him and me go slowly, truly mad.
OH has changed and will continue to change He could be at home if only we could get the support systems in place. That all gets paused when he's in hospital. Even if he was in hospital with a broken arm, all the pending support stops. We have community nurses in place for the insulin jabs but they don't actually do any associated nursing.
When OH is no longer self aware or continent then other plans will come into play.
If OH only had dementia the authorities would leave him alone with me until his mind was gone.
Incarceration is not yet the answer.

 

[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.

Sunday 7 July. Found the chequebook under the box of my financial affairs. Not bonkers

 

[Alisongs]

Destination Deolali

 

[jennifer1967]

does he stress at hospital about you not coming in? this can alter sugar levels as well.

 

[Alisongs]

does he stress at hospital about you not coming in? this can alter sugar levels as well.

Please read this again
Sunday 7 July 2024
5.30am. Hospital put my husband on the phone last night. I find it weird as he seems so disoriented without the visual body language cues. Then he can't find the right words, although he didn't seem to realise. I did say he's on a path to discharge, and the meeting would be in a few days, so get well, don't get upset, and I'd see him then.
He wanted me to visit. I want to visit. I must not. He'd get upset at not going home with me and that would upset all his conditions and destabilise his blood sugar and he'd have to stay in longer.
Bad enough that the hospital seems determined to shunt him off to a nursing home, supposedly temporarily. Another change would be so counterproductive. And then another change if he is allowed home. It takes at least six weeks to get OH into a routine.

 

[Alisongs]

I have emailed the manifesto and my ongoing misery to my solicitor, the dementia support workers and PALS.
And texted my sister and my brother in law, who have not commented. Now going to get rip roaring drunk and try and avoid the six cases of medication a bit longer

 

[Alisongs]

Destination Deolali

 

[jennifer1967]

Please read this again
Sunday 7 July 2024
5.30am. Hospital put my husband on the phone last night. I find it weird as he seems so disoriented without the visual body language cues. Then he can't find the right words, although he didn't seem to realise. I did say he's on a path to discharge, and the meeting would be in a few days, so get well, don't get upset, and I'd see him then.
He wanted me to visit. I want to visit. I must not. He'd get upset at not going home with me and that would upset all his conditions and destabilise his blood sugar and he'd have to stay in longer.
Bad enough that the hospital seems determined to shunt him off to a nursing home, supposedly temporarily. Another change would be so counterproductive. And then another change if he is allowed home. It takes at least six weeks to get OH into a routine.

i did read all your thread in the early hours in the morning. just thought if he was upset talking to you and wanting to see you, then maybe his levels will go up as a result. didnt mean to offend and did read all your posts. sometimes i agree and sometimes i dont but i read them all.

 

[Tabitha2]

I really don't think you should be considering the possibility of your OH being discharged home at this stage. I know hospital is no place for someone with dementia, and obviously you both want him to come home, but from reading your posts you had 4 carers a day, 2 nurses visits for insulin injections, you were run ragged, and still your OH had to be re-admitted to hospital. I don't think there is much more support you would or could be offered "in the community". This pattern will therefore continue ad infinitum, which is really hard for both of you.

Any purely physical illness, i.e. Diabetes and Parkinsons is going to be complicated when dementia is present. Your OH, imo, is never going to be able to manage these himself, so even with all the help available it will be down to you to manage all this, 24/7, 365, as you have previously stated. This is, indeed, a life sentence for both of you, and because he is so young it could go on for many years. Without support from friends or family (you do mention a sister, nieces, OH's brother, ex colleagues, etc.,? perhaps they are not able/willing to help?) I feel you will be unable to shoulder the enormous burden of looking after your OH - both of you will suffer, and clearly you are at the end of your tether.

I think Discharge to Assess is the best option for you both. It will give you a chance to re-charge your batteries, reflect on just how much you think you are able to do and come to a reasoned judgement of the best way forward for both of you. You have been battling all the time against things which you cannot change - illness, dementia, the support (or lack of it!) available - you can only do so much before you collapse. Your OH will not understand, and I know how hard that is.

Monday tomorrow. Talk to the Discharge Co-ordinator, the hospital social worker, PALS, etc., calmly and openly, and express your fears and concerns. I refused to have my partner home the last time they rang out of the blue saying they were discharging, until I had spoken to a doctor/consultant about my concerns (even though I was desperate to get him home, but this was the third time in six weeks). They arranged a meeting the next day.

You are not superwoman, just human like the rest of us struggling to do our best in extremely difficult circumstances, and it will be no help to your OH if you go under. You need to accept that you can't move mountains on your own - you need help.

 

[Alisongs]

i did read all your thread in the early hours in the morning. just thought if he was upset talking to you and wanting to see you, then maybe his levels will go up as a result. didnt mean to offend and did read all your posts. sometimes i agree and sometimes i dont but i read them all.

Thank you for your support. The nurses are aware I'm not going in so he stays on an even keel. Carting him off to a strange nursing home will probably upset everything again. And again if he's allowed home. And again of he's detained against his or my will. He's only 67. Like Tom Hanks or Teresa May. And she has diabetes too.

 

[Alisongs]

Still trying to get rip roaring drunk, still destination Deolali, but have been firing off emails, texts and answerphone messages to get my manifesto across. If only Bill were Tom Hanks or Teresa May (especially her as she does politics and has diabetes!) there'd be no question of a nursing home, temporary or otherwise. And you bet the community nurses would be more proactive with insulin jabs and diabetic management!

 

[Alisongs]

I really don't think you should be considering the possibility of your OH being discharged home at this stage. I know hospital is no place for someone with dementia, and obviously you both want him to come home, but from reading your posts you had 4 carers a day, 2 nurses visits for insulin injections, you were run ragged, and still your OH had to be re-admitted to hospital. I don't think there is much more support you would or could be offered "in the community". This pattern will therefore continue ad infinitum, which is really hard for both of you.

Any purely physical illness, i.e. Diabetes and Parkinsons is going to be complicated when dementia is present. Your OH, imo, is never going to be able to manage these himself, so even with all the help available it will be down to you to manage all this, 24/7, 365, as you have previously stated. This is, indeed, a life sentence for both of you, and because he is so young it could go on for many years. Without support from friends or family (you do mention a sister, nieces, OH's brother, ex colleagues, etc.,? perhaps they are not able/willing to help?) I feel you will be unable to shoulder the enormous burden of looking after your OH - both of you will suffer, and clearly you are at the end of your tether.

I think Discharge to Assess is the best option for you both. It will give you a chance to re-charge your batteries, reflect on just how much you think you are able to do and come to a reasoned judgement of the best way forward for both of you. You have been battling all the time against things which you cannot change - illness, dementia, the support (or lack of it!) available - you can only do so much before you collapse. Your OH will not understand, and I know how hard that is.

Monday tomorrow. Talk to the Discharge Co-ordinator, the hospital social worker, PALS, etc., calmly and openly, and express your fears and concerns. I refused to have my partner home the last time they rang out of the blue saying they were discharging, until I had spoken to a doctor/consultant about my concerns (even though I was desperate to get him home, but this was the third time in six weeks). They arranged a meeting the next day.

You are not superwoman, just human like the rest of us struggling to do our best in extremely difficult circumstances, and it will be no help to your OH if you go under. You need to accept that you can't move mountains on your own - you need help.

OH was readmitted to hospital for Diabetic KetoAcidosis, which had disappeared by the time he was admitted. It was dangerously high 3 days later, so even the hospital with all it's facilities, couldn't help. The Community or district nurses do all his jabs and diabetic management, which means they don't alter his doses every time, but they should, based on the numbers. Other nurses check later in the day if he is still high but it is left to us (me) to get his ketones down by drinking lots and lots. And staying with him. And if he's high on the weekend they call 999 and scarper. That is not nursing or diabetes management. And I'm not supposed to be involved in his diabetic management any more 😂 it's too early in his dementia journey for him to settle in a home. Others with worse dementia and incontinence are still at home. We can't get into a routine of care visits etc., if he keeps being carted off so all the care being planned just stops.

And I am sole carer noone comes nigh nor by, my family is over 100 miles away, and only one of OH's 7! Siblings has seen him in the last 2 years.

Yes it's a slog but it would be far easier if the community nurses actually did their job, and we could get permanent carers, finance and tech in place, but that process has been stopped by social services in the meantime. We don't have a social worker yet either

 

[jennifer1967]

Still trying to get rip roaring drunk, still destination Deolali, but have been firing off emails, texts and answerphone messages to get my manifesto across. If only Bill were Tom Hanks or Teresa May (especially her as she does politics and has diabetes!) there'd be no question of a nursing home, temporary or otherwise. And you bet the community nurses would be more proactive with insulin jabs and diabetic management!

i would either get drunk[not recommended] or fir off emails. not sure that mixing them would really be the best idea. might make the inhibitions less and the typing more so you dont achieve the best results

 

[Violet Jane]

@Alisongs, I've read many or possibly all of your posts but I'm unclear about what you want to happen. You are clearly struggling with your husband at home (not a criticism) but reject the idea of a care home. SS will only pay for four visits a day. If your husband is a self-funder then you can buy in whatever care you like but many hours of care will be expensive.

I think that you are railing against the system and the unfairness of your situation but that won't get you anywhere. Anything deemed social care has to be paid for. Only medical treatment is free.

Please use this time whilst your husband is in hospital to reflect on how best to go forward. There's no point pushing for something that's not possible or available,

With dementia you often have to accept the least worst option. Dementia changes everything.

 

[Alisongs]

@Alisongs, I've read many or possibly all of your posts but I'm unclear about what you want to happen. You are clearly struggling with your husband at home (not a criticism) but reject the idea of a care home. SS will only pay for four visits a day. If your husband is a self-funder then you can buy in whatever care you like but many hours of care will be expensive.

I think that you are railing against the system and the unfairness of your situation but that won't get you anywhere. Anything deemed social care has to be paid for. Only medical treatment is free.

Please use this time whilst your husband is in hospital to reflect on how best to go forward. There's no point pushing for something that's not possible or available,

With dementia you often have to accept the least worst option. Dementia changes everything.

My husband is not ready for a nursing home. If the community nurses did their job properly he would not have high blood sugars. We will be paying for any carers, and day care centre, but are also likely to get NHCC funding, and there is free tech on offer that will help with medication administration. Social services stops anything going forward during hospital stay, and I cannot get him a daycare place or much needed dental and eye care treatment either. Send him home or let him die. I know he'll need full time care eventually, but not while he's 67, engaged with the world, mobile and continent and has legal and financial capacity. If I could persuade him I would. But the hospital has taken it out of our hands, denying my right to a family life too

 

[Alisongs]

i would either get drunk[not recommended] or fir off emails. not sure that mixing them would really be the best idea. might make the inhibitions less and the typing more so you dont achieve the best results

Very hard to get drunk on M and S Bucks Fizz. Virtually no alcohol. Not drunk but social workers and medical professionals who admit they don't look at my husbands overall presentation are driving me to Deolali

 

[jennifer1967]

Very hard to get drunk on M and S Bucks Fizz. Virtually no alcohol. Not drunk but social workers and medical professionals who admit they don't look at my husbands overall presentation are driving me to Deolali

I'm teetotal so no idea butl wouldn't be a good mix. Monday start of the week. I hope you have the outcome that is best for both of you.

 

[Tabitha2]

OH was readmitted to hospital for Diabetic KetoAcidosis, which had disappeared by the time he was admitted. It was dangerously high 3 days later, so even the hospital with all it's facilities, couldn't help. The Community or district nurses do all his jabs and diabetic management, which means they don't alter his doses every time, but they should, based on the numbers. Other nurses check later in the day if he is still high but it is left to us (me) to get his ketones down by drinking lots and lots. And staying with him. And if he's high on the weekend they call 999 and scarper. That is not nursing or diabetes management. And I'm not supposed to be involved in his diabetic management any more 😂 it's too early in his dementia journey for him to settle in a home. Others with worse dementia and incontinence are still at home. We can't get into a routine of care visits etc., if he keeps being carted off so all the care being planned just stops.

And I am sole carer noone comes nigh nor by, my family is over 100 miles away, and only one of OH's 7! Siblings has seen him in the last 2 years.

Yes it's a slog but it would be far easier if the community nurses actually did their job, and we could get permanent carers, finance and tech in place, but that process has been stopped by social services in the meantime. We don't have a social worker yet either

Social Services come into play when he is "in the community", i.e. not in hospital. Whilst in hospital he could be allocated a hospital social worker. Talk to the Nurse in charge and ask for a social worker to be appointed, since his discharge should be classed as " complicated". Talk to PALS if you get nowhere (I was passed from pillar to post, so I understand). I thought you had 4 carers a day on his last discharge? This is the most that will be offered. I think your review was delayed. Shortage of resources is what everyone is having to deal with - as I said, not a battle you can win, so don't fight it.

Lots of people go into a residential care setting and don't have dementia - they have physical or medical problems which are hard to manage. You say you can't get into a routine of care visits if he keeps getting taken into hospital - and that is the point. It may just not be possible to manage his complex care needs at home, and if they can be managed YOU will have to co-ordinate it all. If he lived alone I don't think there would be any doubt that residential care was the only option - with you available and willing (?) to take on the role of full time carer 24/7 365, then it may be a possibility. You have to decide, calmly and rationally, what you can do, and I really don't think you are in a fit state at the moment to make that kind of decision. You are exhausted, and need to realise and accept that. I know it is hard, and heartbreaking, but that is the reality. Your wonderful, clever OH is slowly disappearing, and he cannot return, you can't turn the clock back. Because he still has cognition makes it much harder, but doesn't change the facts. Take time out, chill, try and relax, stop fighting everything and everyone, please, as I am really worried you will implode at some point.

 

[Alisongs]

I'm teetotal so no idea butl wouldn't be a good mix. Monday start of the week. I hope you have the outcome that is best for both of you.

Thank you very much