ALISONGS' DIARY

[Alisongs]

New trainers, hoodie and joggers for OH in his favourite black. (Lets not mention he's finding trousers, belts and braces difficult.)Joggers just pull up and down and have a tight waistband. Look smart too. Adapt and survive. ☑
That's what annoys me about medical protocols. They don't look at the whole person.
Give him four jabs a day at the right times, and support with mealtimes and pill routine and he can stay in privacy at home until he doesn't recognise his surroundings or becomes incontinent. That may not be long, given the speed of decline and lack of holistic support. In the meantime he'd feel safe and comfortable and save the NHS and Social Services a fortune

 

[Alisongs]

Duplicste deleted

 

[Bevhar]

New trainers, hoodie and joggers for OH in his favourite black. (Lets not mention he's finding trousers, belts and braces difficult.)Joggers just pull up and down and have a tight waistband. Look smart too. Adapt and survive. ☑
That's what annoys me about medical protocols. They don't look at the whole person.
Give him four jabs a day at the right times, and support with mealtimes and pill routine and he can stay in privacy at home until he doesn't recognise his surroundings or becomes incontinent. That may not be long, given the speed of decline and lack of holistic support. In the meantime he'd feel safe and comfortable and save the NHS and Social Services a fortune

Well that’s been a productive morning Hope your feeling well rested Such time

New trainers, hoodie and joggers for OH in his favourite black. (Lets not mention he's finding trousers, belts and braces difficult.)Joggers just pull up and down and have a tight waistband. Look smart too. Adapt and survive. ☑
That's what annoys me about medical protocols. They don't look at the whole person.
Give him four jabs a day at the right times, and support with mealtimes and pill routine and he can stay in privacy at home until he doesn't recognise his surroundings or becomes incontinent. That may not be long, given the speed of decline and lack of holistic support. In the meantime he'd feel safe and comfortable and save the NHS and Social Services a fortune

So tough for you I feel there
Is no real help for the carers I’m early on in this journey but I’m already struggling feeling hopeless and alone This forum is really a lifesaver Hope you have a restful nights sleep x

 

[SAP]

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

And yet society workers assume they can determine both as it suits them. I have had experience of both situations. My mum was deemed not to have financial capably the sw which was the correct assessment imho and so they let me make decisions about her care . This was good but she probably still had capacity to make her own decisions regarding carers. I used this to her benefit but the point remains.
My sister was in hospital, she has absolutely no clue about finances , is delusional about her abilities, wants to go back to her ex husband ( that ship sailed long ago) but sw quite happy to not put a DOLs in place because my sister still has capacity to decide where she wants to live. All other professionals involved do not agree with sw. There is no consistency at all for anyone other than a legal expert to fight for the right thing for their loved ones.

 

[Alisongs]

Well that’s been a productive morning Hope your feeling well rested Such time

So tough for you I feel there
Is no real help for the carers I’m early on in this journey but I’m already struggling feeling hopeless and alone This forum is really a lifesaver Hope you have a restful nights sleep x

Sleeping on the sofa right now

And yet society workers assume they can determine both as it suits them. I have had experience of both situations. My mum was deemed not to have financial capably the sw which was the correct assessment imho and so they let me make decisions about her care . This was good but she probably still had capacity to make her own decisions regarding carers. I used this to her benefit but the point remains.
My sister was in hospital, she has absolutely no clue about finances , is delusional about her abilities, wants to go back to her ex husband ( that ship sailed long ago) but sw quite happy to not put a DOLs in place because my sister still has capacity to decide where she wants to live. All other professionals involved do not agree with sw. There is no consistency at all for anyone other than a legal expert to fight for the right thing for their loved ones.

Thanks

 

[Alisongs]

Well that’s been a productive morning Hope your feeling well rested Such time

So tough for you I feel there
Is no real help for the carers I’m early on in this journey but I’m already struggling feeling hopeless and alone This forum is really a lifesaver Hope you have a restful nights sleep x

I thought I was early on this journey too! But maybe OH and I are on the express train with limited stops. Parkinsons diagnosed Spring 2021 (Lockdown) after 25 years of saying it was part of his diabetes. No real follow up for over two years, since then precious little. No prognoses, timelines or warnings of consequences. Memory and anger issues increased in Lockdown, I put down to Lockdown anxiety. I chased memory clinic referral. Dementia diagnosis September 2023. Short alarming journey on an out of control train, with us sitting and clinging to the roof. We had long diversions and complicated routes to the departure station in the first place. We have no idea what or where our destination is. Too fast for us to assimilate anything

 

[Alisongs]

And yet society workers assume they can determine both as it suits them. I have had experience of both situations. My mum was deemed not to have financial capably the sw which was the correct assessment imho and so they let me make decisions about her care . This was good but she probably still had capacity to make her own decisions regarding carers. I used this to her benefit but the point remains.
My sister was in hospital, she has absolutely no clue about finances , is delusional about her abilities, wants to go back to her ex husband ( that ship sailed long ago) but sw quite happy to not put a DOLs in place because my sister still has capacity to decide where she wants to live. All other professionals involved do not agree with sw. There is no consistency at all for anyone other than a legal expert to fight for the right thing for their loved ones.

My OH obviously deemed to have sufficient financial capacity by his bank when we visited 10 days ago, for him to raise concerns about signature and ability to manage. Bank Customer Services exist to support his needs and wishes. It's a joint account anyway.

 

[Alisongs]

Just been reading some Attendance Allowance threads as prep for filling in an application form which I had planned to do tomorrow. OH had been very anti and paranoid about it since dementia diagnosis, until quite recently. But he'd interfere with me doing the application as he says he hasn't got dementia.........
From what I've picked up, I can get supporting documents togethrr and fill the thing in but not send it until we know where he ends up. Me in the loony bin and him in Timbuctoo at this rate.

 

[SAP]

It will also depend on how his care is paid for if he remains in residents care.

 

[Alisongs]

It will also depend on how his care is paid for if he remains in residents care.

Very reluctantly!

 

[Tabitha2]

Just been reading some Attendance Allowance threads as prep for filling in an application form which I had planned to do tomorrow. OH had been very anti and paranoid about it since dementia diagnosis, until quite recently. But he'd interfere with me doing the application as he says he hasn't got dementia.........
From what I've picked up, I can get supporting documents togethrr and fill the thing in but not send it until we know where he ends up. Me in the loony bin and him in Timbuctoo at this rate.

AA isn't just for people with dementia - anyone who struggles to carry out day to day tasks can apply. YOu need to mention that due to his dementia your OH is unable or finds it difficult to manage his medication for his medical conditions and needs help, that he is unable or finds it difficult to prepare or cook food and needs help, etc.,etc. Everything you help him with. Will your husband be self funding? If so you can claim AA wherever he ends up (unless in hospital for an extended period), but if funded by LA you cannot claim it. My mother was awarded AA, and although she clearly has some form of dementia she has never been diagnosed, so I didn't bother mentioning it on the application form, but she suffers from mobility problems, incontinence issues, macular degeneration and arthritis, so needed help on a daily basis from my father. I had to convince them they were entitled to claim, since they both said that obviously they looked after each other (Dad diagnosed with dementia, otherwise pretty fit) - that was what husbands and wives did for each other! When they ended up having to pay for carers he was so grateful I had 'forced them both' to apply, and hasn't stopped thanking me since - not that it pays all the fees obviously, but every little helps.

 

[Alisongs]

AA isn't just for people with dementia - anyone who struggles to carry out day to day tasks can apply. YOu need to mention that due to his dementia your OH is unable or finds it difficult to manage his medication for his medical conditions and needs help, that he is unable or finds it difficult to prepare or cook food and needs help, etc.,etc. Everything you help him with. Will your husband be self funding? If so you can claim AA wherever he ends up (unless in hospital for an extended period), but if funded by LA you cannot claim it. My mother was awarded AA, and although she clearly has some form of dementia she has never been diagnosed, so I didn't bother mentioning it on the application form, but she suffers from mobility problems, incontinence issues, macular degeneration and arthritis, so needed help on a daily basis from my father. I had to convince them they were entitled to claim, since they both said that obviously they looked after each other (Dad diagnosed with dementia, otherwise pretty fit) - that was what husbands and wives did for each other! When they ended up having to pay for carers he was so grateful I had 'forced them both' to apply, and hasn't stopped thanking me since - not that it pays all the fees obviously, but every little helps.

Incredibly helpful thank you ♥

 

[Knitandpurl]

Additionally you need to make it clear that he needs help during the night as well as the day in order to get the higher rate.

 

[Alisongs]

Additionally you need to make it clear that he needs help during the night as well as the day in order to get the higher rate.

☑️

 

[Alisongs]

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.
If he were home, I could carry on with all the bits of help that are coming out of the woodwork. Community nurses for injections, Palliative Care referral, Continuing Care Assessment, application and funding, Attendance Allowance ditto (the least of our worries), the Alcove system trial for medication management, getting further cataract surgery and checks sorted, much needed dental care as he broke a tooth during his Spring stay. Hearing from the mythical Social Worker and the equally mythical post hospital support workers coordinator would be a start. But no, OH is in hospital with a DOLS and my hands are tied. Cannot arrange support and placements ready for an unknown discharge date. And if they put him in a nursing home, even temporarily, it's not likely to be convenient for me to visit by public transport. Even the hospital visits take six hours.....
And I'm supposed to be getting house repairs done this week and will have to cancel, postpone and rearrange to fit in with whenever the hospital dictates the Best Interests Meeting might be (and cancels and delays and rearrangesetc.)
Meanwhile I've got headache and toothache and am so tired.
#careresdon'tmatterwhen thecareeisnotathome

 

[special 1]

At my wits' end with a husband who has no capacity for medication and medical decisions, has Diabetes 1, Parkinsons and Parkinson's dementia. He thinks he's fine. Finally getting limited support after 5 years of buck passing as he's too complicated. I hate what dementia is doing to us. I'm 65 he's 67 neither of us has any quality of life. No family no friends noone comes nigh nor by now he's ill. I'll be posting whenever I'm frustrated. Every 5 minutes?

Hi there. Don't know what to say, just try to keep going if you can. My situation is may be not as bad as your one. I have had to make the choice of putting my husband into a care home as I have damaged my knee through looking after him. He is now at a stage he would not know if my leg was hanging off or care as long as his needs are met. I am in tears with pain every day, not tears of joy that is for sure. Also like you not support from the so called professionals when you kneed them. I don't know if you know or have claimed for free council tax due to your situation. I am in the process of doing that and you can get it back dated if you get a G P to sign the for that they send you along with a doctors report that you might have. May be that is little bit of light at the end of the tunnel for you. Get what ever you can from them as like us all we all deserve something. Mabey we can chat again. Bigggggg huggggs 💔💔💔💔

 

[Alisongs]

Hi there. Don't know what to say, just try to keep going if you can. My situation is may be not as bad as your one. I have had to make the choice of putting my husband into a care home as I have damaged my knee through looking after him. He is now at a stage he would not know if my leg was hanging off or care as long as his needs are met. I am in tears with pain every day, not tears of joy that is for sure. Also like you not support from the so called professionals when you kneed them. I don't know if you know or have claimed for free council tax due to your situation. I am in the process of doing that and you can get it back dated if you get a G P to sign the for that they send you along with a doctors report that you might have. May be that is little bit of light at the end of the tunnel for you. Get what ever you can from them as like us all we all deserve something. Mabey we can chat again. Bigggggg huggggs 💔💔💔💔

Thank you for the hug. Council form for for council tax disregard states, wrongly, that disregard only applies if the affected person is the only occupant and has Attendance Allowance. Least of my worries at the moment. I will take it up with the Chief Executive of the council when I next see him socially. He was a witness at our wedding two years ago

 

[Alisongs]

A manifesto for my husband.
My husband has a brain disease. He is not mentally ill.
He also has diabetes type 1 and Parkinsons disease. These conditions all fight each other. OH's body and mind are their unwilling battleground.
OH still knows who he is, who other people are, and where he is.
He has increasing problems using the right words and making conversation, and is frustrated by this.
He still knows he went potholing, skydiving, hill climbing, and motorcycled and camped all over the UK and France.
He knows he was part of a quality control project for the principal letter and postal delivery firm in the UK and travelled all over the UK and to Europe for this.
He knows he won an award for this so we had premium seats for the Opening Ceremony of the London Olympics 2012. We were a few yards from the music stage where Paul McCartney performed, and just along from retired Olympians. He knows all that.
(So do I, I was there too. Experience of a Lifetime thanks to my husband's hard work.)
He knows he completed several London and other Marathons.
He knows he built the Lotus Roger Moore James Bond stunt cars and helped develop the pre production De Lorean
He knows he took cars for a spin round the track at Lotus on a regular basis. Test drives? No, just for the hell of it. What a way to cheer up a working day. He still knows all this.
He knows he has a degree ion Sociology, Government and Politics. He knows he stood as an independent candidate for MP three times.
He knows he's been a DJ and radio broadcaster.
OH has successfully built, programmed and refurbished an awful lot of computers. He knows all that.
During his previous stay in hospital, the staff all thought he was delusional, until I backed him up.
My husband's working life portfolio includes the James Bond and Back to the Future and Olympics 2012 DVDs . He knows that.
I know that.
Everyone can see and know what he has achieved and still remembers.
If my OH is confined to a nursing home against his will, that will be a cruel and unusual punishment for a mind that has achieved so much and is still cognisant of his achievements.
A nursing home is not the place for a mind like that.
A nursing home would be a torture chamber.
He should come home so we can resume the process of helping him adapt and survive

 

[DeeCee7]

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.

 

[canary]

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.