ALISONGS' DIARY
- Thread starter Alisongs
- Start date
Major concession! Chuffed by his bank visit he's actually been drinking sugar free squash this afternoon. Convinced that all bottled and tap water is otherwise evil at the moment😈
My bank does ot and makes allowances for him, knows he may well forget security questions. It's a joint account which we've had for years
Having tried fruit squash yesterday, apparently convinced plain tap or bottled water is all horrible and evil : When OH asked for his refillable cup with a sippy top to be refilled, I put in the clear fruit flavoured water he's been rejecting. No complaints so far. Really out of it today, 27 in the shade in our back garden. He's on the bed with thick trousers and socks but a cotton T-shirt, had his Parkinsons meds every 3 hours, but has not stopped shaking. Parkinsons and extreme heat or cold are a really bad mix. Diabetes ditto but he has drunk enough this morning. (Has to drink double the normal in this weather.) Just informed me he'll be too shakey to eat a necessary lunch at 12 and I'll have to help him. No request, no niceties, just an instruction.
He doesn't even realise I do all the carb and protein and timing calculations for his meals.
I know OH's apathy and lack of appreciation are part of the dementia, but I am NOT going to spoon feed him. He managed his favourite jelly pot just fine this morning. Could have more but can't be ***** to get them out of the fridge.
He's quite capable of drinking soup or eating food that's squashy or cut up. His preferred implement is a small teaspoon which is very messy. He can use a proper spoon if given no choice.
He can also put his rubbish in the bin and crockery in the dishwasher, if I hint. Thankfully he has taken up putting a napkin round his neck for meals after several trial runs.
I'll have to keep reinforcing the desirable habits and not accepting apathy.
A toddler wouldn't be such hard work!
He doesn't even realise I do all the carb and protein and timing calculations for his meals.
I know OH's apathy and lack of appreciation are part of the dementia, but I am NOT going to spoon feed him. He managed his favourite jelly pot just fine this morning. Could have more but can't be ***** to get them out of the fridge.
He's quite capable of drinking soup or eating food that's squashy or cut up. His preferred implement is a small teaspoon which is very messy. He can use a proper spoon if given no choice.
He can also put his rubbish in the bin and crockery in the dishwasher, if I hint. Thankfully he has taken up putting a napkin round his neck for meals after several trial runs.
I'll have to keep reinforcing the desirable habits and not accepting apathy.
A toddler wouldn't be such hard work!
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8am, he's completely muddled, but it's the heatwave that has sent his blood sugar rocketing. Not making much sense with blood sugar 4x the normal. He's changed his shirt already to look nice for the lady who comes.... So that will be 7 changes today 2x community nurse 5x reenablement support workers. I hope not.
Nominated pharmacy chain has a subscription delivery scheme we signed up to, supposed to send a text when prescription ready and you then choose a 2 hour slot next day. Not at my branch. Tuesdays 9 to 6 and lump it. Couple of items out of stock. Due today Wednesday, but won't deliver until next Tuesday. I have emailed HQ as I feel conned!
*
Later.... Husband not changing shirt for his visitors. Hasn't coped with hot weather, now not happy with cool and overcast day. Yesterday wanted jobs to do, managed to block ensuite loo, we have now cleared it. Laxido works best if used regularly and I don't mean put it down the loo😊. Said he'd cleaned the shower. So had I.....
Volunteered yesterday to do laundry today, now doesn't want to be in charge. Not exactly Dr Jekyll and Mr Hyde but he's working on it! 🫤
.....
Somethings going my way. 4 appointments tomorrow none clashing. OH physio home visit 9 to 10. Carers support at home for me 11 to 12. Assistive technology at home for OH 12 to 1.(Might be able to order the video call medication support system?) Dentist in city for me 2.40pm. Bill home alone 1.45pm on with visits from support worker at 4 and jab nurse at 5.......worry worry he will be fine
*****
7pm
Reablement support area coordinator appears to have vanished. Supposed to visit last Tuesday week, end of week 2, to discuss progress and whether final 4 weeks are chargeable, changing to another provider or services, and helping find support. She had Covid. Not a dickie bird since. Support Workers keep putting requests on their system. Nothing. I have no idea what we want, need or might be available, especially as there's a possibility of Continuing Care which has not yet been decided.....
No social worker until week 4 either. Up the Orinoco without a canoe.....
Nominated pharmacy chain has a subscription delivery scheme we signed up to, supposed to send a text when prescription ready and you then choose a 2 hour slot next day. Not at my branch. Tuesdays 9 to 6 and lump it. Couple of items out of stock. Due today Wednesday, but won't deliver until next Tuesday. I have emailed HQ as I feel conned!
*
Later.... Husband not changing shirt for his visitors. Hasn't coped with hot weather, now not happy with cool and overcast day. Yesterday wanted jobs to do, managed to block ensuite loo, we have now cleared it. Laxido works best if used regularly and I don't mean put it down the loo😊. Said he'd cleaned the shower. So had I.....
Volunteered yesterday to do laundry today, now doesn't want to be in charge. Not exactly Dr Jekyll and Mr Hyde but he's working on it! 🫤
.....
Somethings going my way. 4 appointments tomorrow none clashing. OH physio home visit 9 to 10. Carers support at home for me 11 to 12. Assistive technology at home for OH 12 to 1.(Might be able to order the video call medication support system?) Dentist in city for me 2.40pm. Bill home alone 1.45pm on with visits from support worker at 4 and jab nurse at 5.......worry worry he will be fine
*****
7pm
Reablement support area coordinator appears to have vanished. Supposed to visit last Tuesday week, end of week 2, to discuss progress and whether final 4 weeks are chargeable, changing to another provider or services, and helping find support. She had Covid. Not a dickie bird since. Support Workers keep putting requests on their system. Nothing. I have no idea what we want, need or might be available, especially as there's a possibility of Continuing Care which has not yet been decided.....
No social worker until week 4 either. Up the Orinoco without a canoe.....
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Starting the day by reading various posts. OH has not so obviously been sliding gently into dementia for years on top of the 20 year delay in diagnosing Parkinsons as it was all put down to effects of 50 years of diabetes type 1.....He's 67 I'm just 65.....Lack of spatial awareness, lack of coordination, cannot find words, or converse or answer..... Trouble is he's still mobile, balance is going, permanently in host mode in public, only minor adjustments and adaptations to daily skills and needs (but lots of them, all demanding my input). He recognises he can't really go anywhere alone if he wants to present as normal, but is in denial of dementia, puts it down to Parkinson's. He's deteriorated so fast since dementia diagnosis 9 months ago, I'm beginning to equate his situation with my mum, she died at 103, having really had problems from the age of 100. (Hospital and Social Services insisted she had capacity for 3 years. Managed to get her to agree to care home 4 months before she died. Care home admissions diagnosis was end stage dementia). Hoping OH only has 3 years left, it would be too cruel if he drags on for decades.
**
1.10pm
Appointments done. While I was with Carers Matter Coordinator, Bill secretly pigged himself, 2 jellies, 3 biscuits, 1 orange that I know of. His blood sugar at the time was 3x normal person. He thought he was low. Have to ignore when happening otherwise we both get angry. I try so hard and he self sabotages. What is that Joan Collins said? If he dies, he dies. Cold and hard but if fridge and cupboards had catches and locks he would break them in a temper. And ruin a 2 year old £10k kitchen. Leaving him alone as I am going to dentist, Support worker not till 4pm, insulin nurse at 5pm......I left a note for the nurse
On the positive side, Community Matron collected Continuing Care Assessment consent forms which I signed. Bill did remember what they were for! Assistive Technologies will try and source an Alcove system trial soon.
***
6pm
OH survived alone, I survived the dentist. OH answered his phone after I got into the city, didn't answer after my appointment. I reasoned the support worker was due at 4, so rang then. She answered for him. He'd put the phone on the coffee table and gone up to bed.... I got home at 5, community nurse was there and pleased his blood sugar and ketones are fine. I'm something of a nervous wreck as he is overeating and sneaking food, yet his blood sugar ends up fine.
Monitor and measure by the rules, and his blood sugar is all over the place. Like he's intermittently diabetics, as if his pancreas is trying to work, having packed up 50 years ago. I can't win!
**
1.10pm
Appointments done. While I was with Carers Matter Coordinator, Bill secretly pigged himself, 2 jellies, 3 biscuits, 1 orange that I know of. His blood sugar at the time was 3x normal person. He thought he was low. Have to ignore when happening otherwise we both get angry. I try so hard and he self sabotages. What is that Joan Collins said? If he dies, he dies. Cold and hard but if fridge and cupboards had catches and locks he would break them in a temper. And ruin a 2 year old £10k kitchen. Leaving him alone as I am going to dentist, Support worker not till 4pm, insulin nurse at 5pm......I left a note for the nurse
On the positive side, Community Matron collected Continuing Care Assessment consent forms which I signed. Bill did remember what they were for! Assistive Technologies will try and source an Alcove system trial soon.
***
6pm
OH survived alone, I survived the dentist. OH answered his phone after I got into the city, didn't answer after my appointment. I reasoned the support worker was due at 4, so rang then. She answered for him. He'd put the phone on the coffee table and gone up to bed.... I got home at 5, community nurse was there and pleased his blood sugar and ketones are fine. I'm something of a nervous wreck as he is overeating and sneaking food, yet his blood sugar ends up fine.
Monitor and measure by the rules, and his blood sugar is all over the place. Like he's intermittently diabetics, as if his pancreas is trying to work, having packed up 50 years ago. I can't win!
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I hope all the appointments go well for you both @Alisongs
Any assessment will tell you what you need and what is available.
On each occasion my parents have been discharged from hospital following falls, etc., they have been provided with carers 4 times a day arranged by the LA free of charge for a period of up to 6 weeks, and during this time they received an assessment to consider on-going care needs. This was all simple, since they would have been unable to stay at home without this level of care and did not want to go into residential care (must admit, I did try hard to persuade them to since the input required from family to keep them at home even with carers is quite considerable in terms of practicalities as well as emotional stress). They are self funding, so the LA helped arrange for transfer to paid care. While you are waiting for the care co-ordinator to get in touch you should be able to get some idea of what help you feel you will need going forward. If you are self funding you are free to make any arrangements you wish at any time really, but if not you will have to wait for the assessment.
No idea what to do or where to go as no real info forthcoming yet, and I'm too busy chasing after my OH. Hoping Alcove system will help but no trial yet and no idea of costs. County will supply it and fix it if it is provided. Looks like I'll be at home 247 365 for months yet
28 June 2024 8.30am. As we're week 4 of 6 week post hospital care package, trying to get OH back to our old system of different coloured plastic tot shot glasses (poundshop 1.00 for 10) for meds at different times of day. 6 times. I've now put the times on the pots too eg 8AM. Love permanent markers. 7am yellow shot tot, 8am clear, 10am pink, 1pm blue, 4pm green, 7pm clear again. Times in black marker, 7pm one very thick ink to differentiate from 8am. The cogs in automated pill dispenser are too unreliable, so using as a very annoying timer OH has to tip over then tip back to stop. Went through tots 3 times before support worker came at 8. Tots in a row. OH all over the place. 8am tot had pills in. Shut off alarm after prompt. Several goes to find 8am tot.......This time last year, he had a week's worth of tots set out and reminders on his phone and timed texts from me as I was away, as mum was dying, and then later for the funeral. He only messed up when he knocked the tots on the floor... But had enough sense to only take the smallest capsule at each reminder, to avoid overdose.... Frightening how far he's deteriorated in a year...... But he only had memory and minor speech problems when we got married pre diagnosis in April 2022......This is going too fast for us to manage..... So, pending loss of support workers and waiting for Alcove system, back to shot tot system, 7pm support worker cancelled as I'm nearly always home. I do 7am anyway, probably cancel 8am next Monday onwards. If I go out I'll just leave one or two shot tots out by the alarm. Community nurses will cary on coming 8.30am ish and 5pm ish for his insulin jabs anyway. They won't do anything else only call 999 if he's at risk.... He has a simple phone he doesn't always remember to keep in his pocket......Feel like I'm treading on broken glass all the time
***
OH always wants jobs to do as bored, feels useless. Given a job he either tires quickly, says I don't do that, or gets distracted. Asked him to empty dishwasher and after prompting him not to put dirty stuff in, left him to it. Big mistake! He must have stopped as soon as I left. Most clean crockery left in dishwasher with a couple of dirty crocks added. Then he wonders why he's got no jobs to do. 🤔
***
Just tripped, fell and banged my nose on chest of drawers, cut and bruised, not broken. OH lots of sympathy and from nurse who came to recheck his high blood sugar. OH volunteered to do his own lunch, could not find or identify frozen baked potato, tin of Ratatouille or large plate on his own. Trouble getting potato out of bag, ditto opening tin. Into microwave. He reckoned he could do this alone. Left him to it. Wandered off within 5 minutes. Potato ready. Had to call him. Blank expression when reminded to get and eat his lunch. Place set at table, he's eating at the counter top beside the microwave. I give up. I'm just the Doitall Reminder Robot even when I'm a bit broken🤕
***
6.25pm. He's fine. I went to the city and fetched some of his medication and did a bit of shopping. How come he ignores diet and medical protocols and gets away with it? Is he instinctively recognising something in his diabetes going pear shaped, and taking instinctive measures to put it right before his sugar actually goes low. Weird. Infuriating! 😂
***
8PM. Another long, lonely frustrating evening as he's opted out and gone to bed because of Parkinsons tremors and dementia confusion. I'm not off duty as I have to monitor his blood sugar in case it goes too low during tremors. He wants to be miserable and deathly quiet in a darkened room, won't sit up to help himself breathe, or do stretching that might stop tremors. And he's crumpled 3 pairs of trousers on the floor. He literally has dozens. Never bought any that fitted, then told me he didn't have any so we wasted 100.00 in Spring on 6 pairs that are the wrong size and have button fly he can't do up. He wouldn't let me in the changing room.... Not buying more. We don't have a budget yet as my work pension only started last month. He only has State pension and we've spent my redundancy pay as he wanted to save his pension for that year. I have been a total idiot always fixing things for him since I was made redundant . Only got dementia diagnosis in September. We can't keep up with the deterioration. Today has highlighted that he gives no thought or credence to HIS wedding vows to love honour and cherish in sickness and in health. I went to the city after a bad shock of tripping over furniture. My nose was badly cut, bruised, bleeding, but off I went to get his meds and his favourite jellies. I now have two black eyes and he hasn't noticed. He only worried that dinner took ages. Ten minutes in the microwave from frozen. Then he just went off to bed, claiming to have too many tremors to take his anti tremor meds. I practically had to force them down him as he couldn't be asked to get the pot off the kitchen table. I'd be better off dead. I have no life and no marriage and it is making me ill. Rant over. I won't write any more today. I just feel worse
***
OH always wants jobs to do as bored, feels useless. Given a job he either tires quickly, says I don't do that, or gets distracted. Asked him to empty dishwasher and after prompting him not to put dirty stuff in, left him to it. Big mistake! He must have stopped as soon as I left. Most clean crockery left in dishwasher with a couple of dirty crocks added. Then he wonders why he's got no jobs to do. 🤔
***
Just tripped, fell and banged my nose on chest of drawers, cut and bruised, not broken. OH lots of sympathy and from nurse who came to recheck his high blood sugar. OH volunteered to do his own lunch, could not find or identify frozen baked potato, tin of Ratatouille or large plate on his own. Trouble getting potato out of bag, ditto opening tin. Into microwave. He reckoned he could do this alone. Left him to it. Wandered off within 5 minutes. Potato ready. Had to call him. Blank expression when reminded to get and eat his lunch. Place set at table, he's eating at the counter top beside the microwave. I give up. I'm just the Doitall Reminder Robot even when I'm a bit broken🤕
***
6.25pm. He's fine. I went to the city and fetched some of his medication and did a bit of shopping. How come he ignores diet and medical protocols and gets away with it? Is he instinctively recognising something in his diabetes going pear shaped, and taking instinctive measures to put it right before his sugar actually goes low. Weird. Infuriating! 😂
***
8PM. Another long, lonely frustrating evening as he's opted out and gone to bed because of Parkinsons tremors and dementia confusion. I'm not off duty as I have to monitor his blood sugar in case it goes too low during tremors. He wants to be miserable and deathly quiet in a darkened room, won't sit up to help himself breathe, or do stretching that might stop tremors. And he's crumpled 3 pairs of trousers on the floor. He literally has dozens. Never bought any that fitted, then told me he didn't have any so we wasted 100.00 in Spring on 6 pairs that are the wrong size and have button fly he can't do up. He wouldn't let me in the changing room.... Not buying more. We don't have a budget yet as my work pension only started last month. He only has State pension and we've spent my redundancy pay as he wanted to save his pension for that year. I have been a total idiot always fixing things for him since I was made redundant . Only got dementia diagnosis in September. We can't keep up with the deterioration. Today has highlighted that he gives no thought or credence to HIS wedding vows to love honour and cherish in sickness and in health. I went to the city after a bad shock of tripping over furniture. My nose was badly cut, bruised, bleeding, but off I went to get his meds and his favourite jellies. I now have two black eyes and he hasn't noticed. He only worried that dinner took ages. Ten minutes in the microwave from frozen. Then he just went off to bed, claiming to have too many tremors to take his anti tremor meds. I practically had to force them down him as he couldn't be asked to get the pot off the kitchen table. I'd be better off dead. I have no life and no marriage and it is making me ill. Rant over. I won't write any more today. I just feel worse
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Sunday 30 June 2024
Well that was interesting. Not.
Assaulted by ambulance man yesterday, and I!! ended up arrested and held at out of the way police station for 24 hours, bailed until 29 September. I wanted to get out of ambulance and go home. Big bloke shouting forced me down and held me forcefully by the shoulders. I yelled to be let go. He refused. It really hurt. After several minutes I managed to get hands up to push him off. Captured on ambulance TV. Arrested at A and E he apparently claimed I kicked and scratched him. Wymondham Police lovely and food good. We were going to A and E for OH's high blood sugar and ketones that district nurses are failing to manage and don't do anything just call ambulance. Not happy if we have to spend every Saturday like that. Blood sugar and ketones had dropped by the time ambulance set off. Pointless. Home now no update re OH. Presume still in hospital or dead
***
Ambulanceman also gave "mistaken" info at A and E admittance. I was still there. Claimed blood sugar 27, ketones 6, which is what they had been at 9am. Bill had an drunk 3 litres and I tested him at blood sugar 16 before we got in ambulance. Soo what the ambulanceman did with blood sugar tests he did, I do not know. Hospital has admitted OH to Ward AMU, just confirmed admitting tests were BS 13.2, a wee bit high, 11 is fine, and ketones 1.2 should be under 0.9 would not normally be admitted for this. Awaiting discharge coordinators Monday. I have not spoken to OH, have no intention of going anywhere near hospital. Even Police thought ambulanceman taking the mick claiming I scratched him! Once everything reviewed attend bail 29 September, see what happens
***
I am constantly getting the impression that big blokes in a uniform but with no proper authority have a problem with smaller members of the opposite sex seeking/knowing better all round information. If they can't intimidate you with their size and talk, they go for physically overcoming you. (eg Security at hospital grabbing and crashing me to the ground three times)
I'm not easily intimidated as most adults are bigger than me!
***
I also hate the way that people weigh in unannounced 'to support you' and take up your time in person or on the phone, each asking the same d*** questions. And offering nothing new or helpful only leaflets, referrals that mostly don't bear any fruit. (A dozen or so referrals to complete Attendance Allowance forms, response nil) Or a an often unannounced, hour long checkup phone call to tick their own box, but hang up pretty abruptly at the end of an hour. Box ticked.
They get all offended if there are questions you don't want to answer.
They don't cop on it is inappropriate to broadcast your woes to them, sitting on a bus or a bench in public in the city. They won't hang up if you say your husband needs his timed meds or meal or his blood sugar alarm is bleeping.
All they seem to want to know is:
Do you own your own house?Why should I tell a stranger?
How much savings have you got? Ditto
Do you have children? Said as if childlessness is a character fault. Why reveal hurtful infertility due to childhood illnesses?
Not allowed to adopt or foster when younger due to chronic illness. I know policies may be different now, but why do we have to repeatedly revisit our hurt and explain or justify to nosey strangers?
If we had children we wouldn't be identifying as a couple without any family or friends leaping in to help (Ha ha ha they all run swiftly in any direction but ours).
If I had a penny for each time I've been asked about my nonexistent children in the last six months, I'd be a millionairess. Stop rubbing it in.
When OH was in hospital in Spring I had one day I was trying to get to hospital to visit. Call followed call for SIX hours. They ticked their boxes, I got no lunch until after 3pm and then couldn't get to hospital as there would be no connecting busses back in the evening. Two each way, two hours each way allowing for the wait in-between, and 2 hours with OH
***
Insensitive, inquisitive, unkind, unproductive time bandits. Everyone wants a piece of me and I have nothing left
***
AND have no option must attend bail hearing later this year or risk rearrest. No options, no exceptions and because of the obscure location it will cost a mint by taxi, take all day, and I will have to pay a solicitor to help me.
OH will be left alone all day.
OH and I would be better off dead
Hope you all had a good weekend.
Well that was interesting. Not.
Assaulted by ambulance man yesterday, and I!! ended up arrested and held at out of the way police station for 24 hours, bailed until 29 September. I wanted to get out of ambulance and go home. Big bloke shouting forced me down and held me forcefully by the shoulders. I yelled to be let go. He refused. It really hurt. After several minutes I managed to get hands up to push him off. Captured on ambulance TV. Arrested at A and E he apparently claimed I kicked and scratched him. Wymondham Police lovely and food good. We were going to A and E for OH's high blood sugar and ketones that district nurses are failing to manage and don't do anything just call ambulance. Not happy if we have to spend every Saturday like that. Blood sugar and ketones had dropped by the time ambulance set off. Pointless. Home now no update re OH. Presume still in hospital or dead
***
Ambulanceman also gave "mistaken" info at A and E admittance. I was still there. Claimed blood sugar 27, ketones 6, which is what they had been at 9am. Bill had an drunk 3 litres and I tested him at blood sugar 16 before we got in ambulance. Soo what the ambulanceman did with blood sugar tests he did, I do not know. Hospital has admitted OH to Ward AMU, just confirmed admitting tests were BS 13.2, a wee bit high, 11 is fine, and ketones 1.2 should be under 0.9 would not normally be admitted for this. Awaiting discharge coordinators Monday. I have not spoken to OH, have no intention of going anywhere near hospital. Even Police thought ambulanceman taking the mick claiming I scratched him! Once everything reviewed attend bail 29 September, see what happens
***
I am constantly getting the impression that big blokes in a uniform but with no proper authority have a problem with smaller members of the opposite sex seeking/knowing better all round information. If they can't intimidate you with their size and talk, they go for physically overcoming you. (eg Security at hospital grabbing and crashing me to the ground three times)
I'm not easily intimidated as most adults are bigger than me!
***
I also hate the way that people weigh in unannounced 'to support you' and take up your time in person or on the phone, each asking the same d*** questions. And offering nothing new or helpful only leaflets, referrals that mostly don't bear any fruit. (A dozen or so referrals to complete Attendance Allowance forms, response nil) Or a an often unannounced, hour long checkup phone call to tick their own box, but hang up pretty abruptly at the end of an hour. Box ticked.
They get all offended if there are questions you don't want to answer.
They don't cop on it is inappropriate to broadcast your woes to them, sitting on a bus or a bench in public in the city. They won't hang up if you say your husband needs his timed meds or meal or his blood sugar alarm is bleeping.
All they seem to want to know is:
Do you own your own house?Why should I tell a stranger?
How much savings have you got? Ditto
Do you have children? Said as if childlessness is a character fault. Why reveal hurtful infertility due to childhood illnesses?
Not allowed to adopt or foster when younger due to chronic illness. I know policies may be different now, but why do we have to repeatedly revisit our hurt and explain or justify to nosey strangers?
If we had children we wouldn't be identifying as a couple without any family or friends leaping in to help (Ha ha ha they all run swiftly in any direction but ours).
If I had a penny for each time I've been asked about my nonexistent children in the last six months, I'd be a millionairess. Stop rubbing it in.
When OH was in hospital in Spring I had one day I was trying to get to hospital to visit. Call followed call for SIX hours. They ticked their boxes, I got no lunch until after 3pm and then couldn't get to hospital as there would be no connecting busses back in the evening. Two each way, two hours each way allowing for the wait in-between, and 2 hours with OH
***
Insensitive, inquisitive, unkind, unproductive time bandits. Everyone wants a piece of me and I have nothing left
***
AND have no option must attend bail hearing later this year or risk rearrest. No options, no exceptions and because of the obscure location it will cost a mint by taxi, take all day, and I will have to pay a solicitor to help me.
OH will be left alone all day.
OH and I would be better off dead
Hope you all had a good weekend.
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