ALISONGS' DIARY

[Bevhar]

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?

This forum is brilliant to get things off your chest He has a lot going on Have you joined any groups I’ve found them a great help
Haven’t you got any family or is it they just don’t visit I felt so alone when my husband was diagnosed your just given a diagnosis & left to fend for yourself my husband was diagnosed at 67 he’s 68 now I’m 70 I find it hard as my mobility is not good I have arthritis in a lot of my body I fell & broke my hand & cracked my ribs 5 weeks ago It’s been a nightmare with neither of us driving I’m trying to accept the diagnosis but find it so hard Some days I don’t feel life is worth living but then I see people losing young children & feel ashamed but it’s so so hard Have you got a dementia advisor or are you in an area where there are Admiral nurses Would your husband join any groups My heart goes out to you you have so much to contend with Take care

 

[Alisongs]

9pm. Got things ready if called to hospital.

Been talking to his late Mum, who died in her 90s, at peace with herself and God. At her hospital bedside, and later by her coffin, I promised her I would look after Bill. She was a lovely, lively, funny woman who hugged me more in the 25 years I knew her, than my mother ever did. Archetypal Granny. Hope she's waiting to hug him again if OH doesn't get through this.

 

[Alisongs]

This forum is brilliant to get things off your chest He has a lot going on Have you joined any groups I’ve found them a great help
Haven’t you got any family or is it they just don’t visit I felt so alone when my husband was diagnosed your just given a diagnosis & left to fend for yourself my husband was diagnosed at 67 he’s 68 now I’m 70 I find it hard as my mobility is not good I have arthritis in a lot of my body I fell & broke my hand & cracked my ribs 5 weeks ago It’s been a nightmare with neither of us driving I’m trying to accept the diagnosis but find it so hard Some days I don’t feel life is worth living but then I see people losing young children & feel ashamed but it’s so so hard Have you got a dementia advisor or are you in an area where there are Admiral nurses Would your husband join any groups My heart goes out to you you have so much to contend with Take care

🙃

 

[Izzy]

9pm. Got things ready if called to hospital.

Been talking to his late Mum, who died in her 90s, at peace with herself and God. At her hospital bedside, and later by her coffin, I promised her I would look after Bill. She was a lovely, lively, funny woman who hugged me more in the 25 years I knew her, than my mother ever did. Archetypal Granny. Hope she's waiting to hug him again if OH doesn't get through this.

Wishing you strength @Alisongs.

 

[Alisongs]

Wishing you strength @Alisongs.

❤️

 

[Bevhar]

1 July 7.20pm. Been lolloping on the bed most of the day WhatsApping my family and ex colleagues. Lots of virtual support. Getting through to hospital ward extremely difficult. Twice no reply after 30 minutes or more. Third time got hung up on after 30 minutes. Fourth time got through to Ward reception, luckily Ward Administrator was there. OH seriously ill with Diabetic KetoAcidosis, blood sugar 31 (normal people about 5) and dangerous ketone (poison) levels. Given that his blood sugar was 13 on admittance (11 usual, 6-15 acceptable in his case) and ketones were acceptable at 1.2, I'd obviously done all the right things. Did wonder aloud what nurses had been doing to him, Ward Administrator not happy! 😂. They do have my contact number but not keeping me, wife, next of kin, informed.
OH on IV of fluids vitamins and insulin to try to get levels down. Usually only takes a day or two. He's been in since Saturday 3pm and he was not DKA then. Can cause brain damage and organ damage and failure if not controlled. Even death.
At least the DKA started when he was already on the ward. Nothing I did wrong, and nothing I can do now. Parkinsons, diabetes and dementia all aggravate each other. I am not going to visit as he will be upset and more confused and not understand and so drive his levels up. And I will not be able to get through to him or soothe him. Three conflicting conditions that even the hospital cannot control. Very worrying. Nothing I can do. I'd rather he died in a high sugar haze ( The comfy feeling you get after a full Christmas dinner). More damage to live with would be too cruel. It's been a roller coaster weekend for us both. Very sobering.

I can’t believe what you’ve had to deal with So so tough It sounds so exhausting Im glad your going to have some money of your own Have you got children or is it just you & your husband Take care of yourself I read so many times that us carers pass before who we are caring for I find it so hard having no joy in our lives You have definitely taken your wedding vows seriously I hope you get the help you deserve I saw once in the paper a career was in such a bad way they took there partner to the hospital & just left them I know it sounds callous but they must have been absolutely at the end of their tether Carers need to be looked after as I feel it would not take much to burn out I feel so old & tired and sometimes feel there’s no point to life Take care x

 

[Alisongs]

I can’t believe what you’ve had to deal with So so tough It sounds so exhausting Im glad your going to have some money of your own Have you got children or is it just you & your husband Take care of yourself I read so many times that us carers pass before who we are caring for I find it so hard having no joy in our lives You have definitely taken your wedding vows seriously I hope you get the help you deserve I saw once in the paper a career was in such a bad way they took there partner to the hospital & just left them I know it sounds callous but they must have been absolutely at the end of their tether Carers need to be looked after as I feel it would not take much to burn out I feel so old & tired and sometimes feel there’s no point to life Take care x

I can’t believe what you’ve had to deal with So so tough It sounds so exhausting Im glad your going to have some money of your own Have you got children or is it just you & your husband Take care of yourself I read so many times that us carers pass before who we are caring for I find it so hard having no joy in our lives You have definitely taken your wedding vows seriously I hope you get the help you deserve I saw once in the paper a career was in such a bad way they took there partner to the hospital & just left them I know it sounds callous but they must have been absolutely at the end of their tether Carers need to be looked after as I feel it would not take much to burn out I feel so old & tired and sometimes feel there’s no point to life Take care x

Thank you. No children or close family and friends run swiftly in any other direction but ours! Even Hospital can't manage his complex problems

 

[Alisongs]

1 July 11pm
One last post tonight. OH has been transferred back to horrible Ward we had problems with before. Spoke to very kind Nurse. OH not in DKA at the moment but still erratic. Still on fluids and insulin drip. I will not visit as adds to his confusion and distress which drives diabetes problems. And let's not mention the Parkinsons they never got to grips with before.....
On the other hand I'm wondering where I'll end up.
Assault on ambulance worker quite serious which nobody went into at police station custody suite or at interview. Am hoping to retain same solicitor for bail hearing in September, but there should also be free duty solicitor. If charged and imprisoned OH would not be my problem. Carer's luck means that's not likely to happen.
Prickly social worker I was interrogated by on Sunday morning in the guise of mental health support said I must be anxious to get OH back home to care for him. She got a shock when I retorted I was his wife and not obliged to be his carer, and being in custody was time off

 

[Bevhar]

Thank you. No children or close family and friends run swiftly in any other direction but ours! Even Hospital can't manage his complex problems

Absolutely horrendous for you Our friends
Have been very supportive that’s what has kept me going I find most people ask how is my husband but not how I’m doing i know that may sound selfish But some days I feel I’m drowning The system in this country is broken I was in a very bad way after I’d had my fall I rang to try & make a doctors appointment & it was 2 weeks and that was over the phone I really hope you get the help you so badly need soon x

 

[Alisongs]

Absolutely horrendous for you Our friends
Have been very supportive that’s what has kept me going I find most people ask how is my husband but not how I’m doing i know that may sound selfish But some days I feel I’m drowning The system in this country is broken I was in a very bad way after I’d had my fall I rang to try & make a doctors appointment & it was 2 weeks and that was over the phone I really hope you get the help you so badly need soon x

Thank you

 

[My Mum's Daughter]

1 July 11pm
One last post tonight. OH has been transferred back to horrible Ward we had problems with before. Spoke to very kind Nurse. OH not in DKA at the moment but still erratic. Still on fluids and insulin drip. I will not visit as adds to his confusion and distress which drives diabetes problems. And let's not mention the Parkinsons they never got to grips with before.....
On the other hand I'm wondering where I'll end up.
Assault on ambulance worker quite serious which nobody went into at police station custody suite or at interview. Am hoping to retain same solicitor for bail hearing in September, but there should also be free duty solicitor. If charged and imprisoned OH would not be my problem. Carer's luck means that's not likely to happen.
Prickly social worker I was interrogated by on Sunday morning in the guise of mental health support said I must be anxious to get OH back home to care for him. She got a shock when I retorted I was his wife and not obliged to be his carer, and being in custody was time off

If my husband, mother, father or anyone I knew was in this situation, I'd be and have been, camped outside their door.
Hopefully this will all result in your OH getting the support he desperately needs and you're released from your caring responsibilities.

 

[Alisongs]

If my husband, mother, father or anyone I knew was in this situation, I'd be and have been, camped outside their door.
Hopefully this will all result in your OH getting the support he desperately needs and you're released from your caring responsibilities.

I've told my sister and nieces of the circumstances of my arrest, they're a hundred miles away, and sister hasn't commented.....

 

[Knitandpurl]

You won’t be imprisoned. The video will show the circumstances and degree of your ‘assault’ of the ambulance worker and that he has been economical with the truth. You also have considerable mitigating circumstances to claim (and make sure you get photos of your bruised shoulders and wrists). If the case is not actually dropped it will probably be a conditional discharge. The prisons are full. We are all touting for you. Glad to hear OH is a bit better.

 

[Alisongs]

You won’t be imprisoned. The video will show the circumstances and degree of your ‘assault’ of the ambulance worker and that he has been economical with the truth. You also have considerable mitigating circumstances to claim (and make sure you get photos of your bruised shoulders and wrists). If the case is not actually dropped it will probably be a conditional discharge. The prisons are full. We are all touting for you. Glad to hear OH is a bit better.

Bruised wrists was armed police handcuffs. I didn't think claiming Perleece Brootalitee would help me and said as much to the examining nurse. I don't have shoulder bruises either, thanks to thick jacket but it still hurt like hell. Police Nurse also enquired about massive black eyes. I explained I lost a Battle with a Chest of Drawers on Friday, it didn't hurt and I felt fine. I now have a constant tension headache and pain in the temple and neck, probably after effects of said Battle so ought to go to Walk In Centre to be looked at. Could add this to evidence?

 

[My Mum's Daughter]

I've told my sister and nieces of the circumstances of my arrest, they're a hundred miles away, and sister hasn't commented.....

Having cared for Mum for many years, my attitude to more distance relations ends with a sympathetic ear but where are these relation who were happy to take on LPA? If they're happy to take legal responsibility for his funds, then surely they should also be interested in both your welfare????

I only hope that your inheritance brings you stability and the freedom that you so clearly desire and with it, your husband gets his much needed nursing are that was recommended. No more relying on his pension must be a great relief to you. I wish you luck and happiness in your future.

 

[Alisongs]

Having cared for Mum for many years, my attitude to more distance relations ends with a sympathetic ear but where are these relation who were happy to take on LPA? If they're happy to take legal responsibility for his funds, then surely they should also be interested in both your welfare????

I only hope that your inheritance brings you stability and the freedom that you so clearly desire and with it, your husband gets his much needed nursing are that was recommended. No more relying on his pension must be a great relief to you. I wish you luck and happiness in your future.

❤️

 

[My Mum's Daughter]

You won’t be imprisoned. The video will show the circumstances and degree of your ‘assault’ of the ambulance worker and that he has been economical with the truth. You also have considerable mitigating circumstances to claim (and make sure you get photos of your bruised shoulders and wrists). If the case is not actually dropped it will probably be a conditional discharge. The prisons are full. We are all touting for you. Glad to hear OH is a bit better.

Far from it, she's actually facing a sentence of as much as 12 months and unless we've seen the evidence, I don't think we're in a position to comment further.

 

[Alisongs]

Far from it, she's actually facing a sentence of as much as 12 months and unless we've seen the evidence, I don't think we're in a position to comment further.

Exactly. Thank you

 

[Alisongs]

Tuesday 2 July 8.40am
Didnt sleep until 4am. Feeling better, no headache. Read up on black eyes, should get checked for concussion and consequence and possible fractures. OH in hospital, thought I had time for Walk In Centre etc. But no. Admiral Nurse coming here this morning, as arranged a couple of weeks ago. The scheduler on my phone is giving up on reminders as I have so many To Dos every day.
***
Admiral Nurse was lovely. Here for over two hours. Must try to do Attendance Allowance forms this weekend while OH out of the way.
***
GP rang so he also got my woes both barrels. He'll ring again another day. The children question got asked. Again. And the self harm suicide one......Erm... He has my medical records, no pregnancies or childbirths, and I tried to jump out of a moving ambulance on Saturday as I have no life anyway..... Hope he will arrange a home visit, have no oomph to go chasing about.
***
And on the the practical side I have been looking up what to do before going to prison.
***
I tried baking bread as a distraction. Sourdough starter bubbling nicely on the worktop. Baked into a damp dead slug that didn't rise at all. My mood exactly🍞⚰️🫥
***
9pm. Never got to Walk in Centre just wanted to curl up alone. Feeling much better but constant stress tinnitus and on edge, as if walking barefoot on broken glass. Fight or flight feelingall the time. I really didn't like or want a crowd of strangers in our house on Saturday. Five in total including Community Nurse and our 6 week post hospital support worker. Sooooo intrusive. No time for breakfast or lunch running around doing their bidding, answering their questions, feeling I'm getting in their way. In our own house. I was the only one making my OH drink (3 litres) to get blood sugars and ketones down. Which i always do. Community Nurse just calls 999 and leaves. That's not nursing. Ambulance crew came while I was in loo. They rang and banged on front door while I was shouting where I was and they'd have to wait. OH stood by front door saying same, but didn't open door.
Have got so worried about my anxiety, sleeplessness and the feeling I'm being sucked in by OH's dementia world view, that I've done Alzheimers Society dementia check list. Will query my symptoms on GP website tomorrow. He's calling back Thursday anyway.
I just don't feel I live in the same world as everybody else. Last two days I have stayed at home, don't want to go out. The house doesn't feel crowded out with constant strangers, phone calls, dealing with OH's constant problems...... I feel safer again. Alone but not lonely. Quiet. I'm in control here now and in control of what I do.
This house is ours but strangers intrude constantly and often randomly, and feel free to impose their protocols and questions and criticisms. Yet I have become almost totally socially isolated, caring for OH 247 365 doing the things the professionals just expect me to drop everything for.
I feel like I'm being attacked by the Borg from Star Trek. Comply or be destroyed. I don't have a proper understanding of the real world any more.
And hospital switchboard not switching through to any extensions so no contact or news of OH. They never ring me

 

[sdmhred]

Im glad the admiral nurse is coming to see you this morning. I hope she’s a good one and can offer you some support and help xxx