My husband’s Parkinsons was undiagnosed for 20 plus years, tremors and weakness put down to effects of lifelong diabetes type 1. He’s always been very private and self confident. Lockdown accelerated memory loss, confusion, anxiety, paranoia and I hoped this would pass when Lockdown ended and I stopped WFH. His employer insisted he got his bad arm seen to and in January 2021 GP gave him Propanalol. He collapsed with dangerously low blood sugar and he was ambulanced to hospital. Propanalol contraindicated for diabetics… It causes low blood sugar in normal people! He had problems with confusion communicating and remembering for a couple of weeks when discharged. Problems dissipated then accelerated. I began to keep a diary as I was alone and vulnerable, being ghosted and accused of poor memory myself. We have no family and my employers just left me to it. HR got me weekly callbacks to help my mental health and I discussed him in whispers. Nobody helped or got me out of there when I explained his anger and dangerous behaviours towards me. He was signed off work as a health and safety risk for almost two years until he retired. He got basic pay for 6 months then statutory sick pay for 26 weeks then 9 months of no pay. He didn’t realise his payslips said nil and I wasn’t privy then to his slips or his account… At his retirement September 2022 it took me weeks to sort out his tiny company pension to get a lump sum, as he was confused, angry and panicky at each tiny question and answer and so we stopped and each time I had to start afresh. Eventually got pension company to send paperwork as online just couldn’t happen, it timed out. Then employer admitted he should have had medical retirement pay off when sick pay ended 9 months before. Autumn 2022 medical pay off equivalent to 9 months missing pay…I had gone back to the office October 2021 and was made redundant a year later aged 63, husband 66 on State pension with two lump sum pay offs, all of which I had had to sort out… My pay off was 9 months pay not due to get pension until this month May 2024. October 2022 I realised all promises of clearing and tidying garage and house had not been kept. No wonder he’d told me to keep out of garage as not safe. Complete disarray of paperwork and piles of indiscriminate and duplicate items and equipment in dining room, spare bedroom and garage. I spent first day of redundancy tidying back garden. He stayed in bed late and gave up all pretence of doing anything at all. He’d always been the one to insist to do all the techy, electrical and handyman stuff and pay the bills. Everything is on the verge of breaking down now. Including him. He’s gradually become unable to calculate and do his diabetic jabs alone or take his parkinsons and dementia meds without me constantly reminding and delivering them. He confused Parkinsons dyskinesias and tremors with diabetic low blood sugar, kept overeating sugar to feel better and then made himself ill which made parkinsons and sugar control worse and then he started indiscriminate jabs of the wrong insulin, wrong amounts at the wrong time. When he feels ill he’s vehemently and threateningly angry if I can’t sort it there and then. 999 and 111 don’t help overnight at weekends or public holidays as parkinsons and diabetes not curable and the hospital diabetic ‘out of hours’ helpline was 9 to 4 M to F only! Last time when doctor, district nurse and ambulance had eventually turned up, days later, I’d been trapped in the house and got his tremors and blood sugar down again, by dint of not sleeping for 3 nights…Admitted to hospital 5 weeks ago as a danger to himself and me. ( I was hysterical and too tired to get his jabs right, which he had been refusing). He’s on a dementia ward, I’ve had to refuse any input to his medical care in future, so Social Services had to take responsibility. He has been assessed as no capacity to to see to his own lifesaving insulin jabs and needing nursing home. Proving difficult to find willing nursing home due to complex issues. If I was daft enough to take him home with a care package, district nurse would visit max 3 times a day at odd times, when he needs 5 timed jabs. Carers can’t do jabs. Diabetic nurses totally aware I’ve been doing it all since September and never pointed out he is obliged to self manage, I shouldn’t be doing calculations or jabs for him. If he had a home care package he could have a permanent patch of slow release parkinsons meds so less care visits. Nights, weekends, bank holidays and crises still down to me and I’d have to stay home 247 365 anyway as he can’t be left to his own devices and nurse and carer visits not strictly timed.
Luckily it has been agreed that a nursing home is cheaper and easier than a Social Services care package. He doesn’t realise and still thinks he’s normal enough to come home. He can’t remember he doesn’t do anything alone, can’t see to his own medical needs, appropriate meals or go to appointments, pay bills, tidy house or garage or garden. And I am not yet State retirement age, my redundancy pay is all gone. Company pension kicks in this month. He wouldn’t make a will or give Powersof Attorney We married a couple of years back when he was just starting to go downhill, no dementia diagnosis then, and he insisted all our accounts were made joint, so I would have money later as he expected to die before me due to diabetes, and my family all live to ripe old ages. I cannot do anything without Court of Protection guardianship nor sell over large house without Court Order. We had intended to refurbish, sell, downsize and go travelling. The joint accounts will now fund his care. Luckily my company pension will go into a new independent account at a different bank. I cannot afford our house on my own and it could be years before I get permission to sell. Half of any excess after I buy another place would go for my husbands care I cannot afford to subsidise any fees to get my husband a standard of care he might be comfortable with, and would jeopardise my own future care. I’m not even old enough for State pension yet. My future has been destroyed. I’m very bitter, angry and frustrated and cannot love the stranger in my husband’s body. I just feel I’m a horrible person and just want to put a quick end to a miserable future
Dear Alisongs
I am so sorry to read about all you have gone through - not just recently, but over time. My dad had type 1 diabetes and I think that can have effect of making someone very focused on control. This focus keeps them managing their medications and therefore alive so in that sense it’s a good thing. But it is not a good thing if they then won’t reach out for help or let go when they needed to. My Dad also kept trying to work for too long and very probably lost out on money both he and my mum could have used.
It sounds like your husband is absolutely in the right place. You are now left with all the emotions of getting him into care etc… and handling the practicalities of finance / house / pensions etc… This is a lot. Do you have anyone that could help you out with this? Friends or family that might be able to help with the practical stuff? Therapy or counselling can also be really helpful.
There’s a great helpline here at Parkinsons UK that I would really encourage you to call. They have really helped me out on a number of occasions. Most importantly of all, please know you are not a horrible person. You’ve been through some very difficult times. You can find hope again. Please reach out and call the helpline or someone you trust and talk today.
Jenny
Dear Alisongs
You are not horrible, you are good and kind and caring. You have had dreadful things thrown at you and you have been let down and left with no real support, people and systems who should have helped you just were not there. I have seen a friend lose all her savings supporting her husband in a good care home, and now she has nothing for her own needs as her health declines. Another member in the local Parkinsons group wore herself out caring for her mother,and died a month after her mother. Carers are cruelly exploited, please do not blame yourself for any of it. Talk to the helpline, talk to Samaritons . None of this is your fault, the helpline and local advisors may be able to steer you to some financial and legal advice and help.
Maureen
No no practical help from friends whatsoever. All fine words and no do. We have no children. Husband has 7 siblings, they don’t see each other due to a fractious childhood. One brother made one hour long visit to see my husband in hospital to check his mental capacity, got us referred to a very useful care coordinator at district Council, nothing since…
Thanks for the info and advice. Can’t do anything until my husband gets offered a nursing home place. Luckily I have one ex colleague and friend whose husband has early onset dementia so I’m learning from her experience
Hi Ali… so sorry to hear this… it sounds like you are having such a stressful time.
Please get some advice with the finance. SS should only touch half of what is in the joint accounts. Half of that money is yours. AND they have to take into account what you need to live on ongoing…!
Also, in terms of the house and where the proceeds go… as you still live there, SS have to disregard it as part of their calculations for the care. I don’t think that half would need to go to his care as you need a place to live. Please, please, please ring the helpline and get some financial advice. I really feel for you.
Thank you. I understand that what you advise is actually the case, but authorities don’t always provide the correct response in the face of information give. E. G. I’ve been calculating annd giving my husband diabetic jabs and meals for 9+ months, and talking to the hospital diabetes nurses about him not being able to cooperate. I was never told he has to do it himself under self management protocols, and that nurses should have intervened. Professional paid carers are not allowed to do jabs, it has to be a nurse. Informal and family carers should not be left to it either. It is illegal for someone to compel you to take care of someone else. Withholding information should be criminalised, and that should start with the first professional diagnosis of Parkinsons.
Thanks for all the suggestions. Husband has now been 7 weeks in hospital waiting nursing home place. We cannot afford to keep a large 4 bedroom house going and pay for a nursing home and drain our savings and income. Noone has a clue what I’d do then! Far too much for me to deal with mentally and emotionally . So we have decided he will come home with continued NHS care for diabetes jabs and Parkinsons meds (he has been declared to have no capacity for medical matter, cannot keep himself alive). Hospital has done nothing in the last several weeks to adjust his regime for nursing home or home care after they suggested fewer and different jabs and Cobeneldopa patches in week 2. Not addressed excess saliva at all. Daily 2 hour long tremors, weakness and dyskinesia addressed last week by Parkinsons nurse, who said she was adding a small extra dose in the morning. He’s much more coherent in the evening, but his mornings are far worse! Turns out he’s getting extra Madopar 5x day! Overdose territory! 812 5mg per day with 800mg max suggested per day…He has a specific meal plan to avoid or cushion the effect of protein, but he still gets offered and given whatever he wants. Mealtimes vary but he’s given the Madopar at strict times even within 5 minutes of a meal… Hes left to himself for hygiene, except they nah him to do a full change of clothes every day. There is no stimulation, no TV or radio possible in a crowded busy ward, the fobbing off response to anything staff can’t do or are too busy for is “I’ll come and see you in a bit” and they don’t / can’t. He’s got dementia he doesn’t understand!!! Now waiting for interim nursing home place where his medical regime will be adjusted so he can come home on NHS continuing care. No timescales so I’m still spending 3 hours most days travelling to and fro to entertain, stimulate and tidy him up. That takes a couple of hours. His belongings disappear even so. So I go shopping for toiletries, a daily roll of kitchen paper to wipe saliva (tissues disintegrate) newspapers, books, diabetic sweets, replacing lost flannels, shirts, shoes, phone… It’s a full time job having him in hospital, and no idea where or when the interim nursing home will be. Anywhere in a large, mostly rural county, apparently. I don’t want him home because I know he’ll get worse, but I can do better than the hospital for him, and district nurse support will enable me to leave him briefly unattended if nurse is due to visit. And we can sort out house and garage, wills, lasting powers of attorney, sell up and move somewhere easier. And get him to the dentist for a broken tooth and the barbers for a haircut. And wrest my autonomy back from the random whims of the hospital
O1. 06.2024
A summary. Much has changed since my first post. Thanks to eight weeks of errors, indifference and potentially broken law by ward staff at the hospital, my husband is coming home. I thought my husband would be better off in hospital or a nursing home. I’m a damn sight more careful and precise about his diet and medication!
To get round my husband not wanting me to be his carer nurse and nag, and to return to a marital relationship, a nurse will come in to do his insulin jabs. Apparently free under NHS continuing care. If he cannot self manage, NHS protocols require a nurse to take over. It is not legal to give the carer no option.
The hospital is getting jabs down to twice a day. (Not funny how they expected me to do it 5x day!).
The hospital suggested 6 weeks ago that he have a slow release patch for his Parkinsons meds. Now they want carers several times a day for his capsules etc. Still tossing between free continuing care and paid for social care.
I keep reminding the hospital of the slow release patches. Once or twice a day so a nurse could do it with the jabs. (Or Bill could, or I could as it’s not intrusive like a jab or tablets.) Avoids the highs and lows and disadvantages of the 5x day high doses so far. Hospital currently has him on more than the maximum! And he’s more shakey than ever.
And he’d be back to carefully calculated timed meals made by me. I have to cook for myself anyway.
And he’d be able to interact with people other than me.
I’d be able to interact with people other than Bill.
I could go out and about if the nurse was due and could come back later, all safe in the knowledge that Bill is not left alone for hours, getting up to all sorts of mischief!
Bill could be taken by me in a taxi to barbers, dentist etc. He needs both ASAP.
We might get out by local bus every week or so, for a bit of sightseeing or to quiet cafes.
He now has ear defenders to block out unnecessary noise and distress.
Having lost or damaged two phones in hospital, I’ve got Bill another simple one. With 10.00pcm unlimited calls (and texts). If I go out, I’ll put a call on loudspeaker to my mobile, so we’re in constant communication. If he hangs up I can ring back.
Yes I know he’ll deteriorate further and get as far as needing fulltime nursing home care. If he’s lucky he’ll die or go completely gaga before then.
From getting married to moderately severe dementia has taken less than two years.
The decline has been too fast for either of us to cope with so far.
His eight weeks in hospital have kept me busier than ever, but I’ve had time to get proper advice and start getting things done for a move to a safe forever home for us both.
Wills, LPOAs, house refurb and clearance will all go ahead. If Bill balks, there’s always the Court of Protection deputyship route.
If Bill ever stays overnight in hospital again, I’ll be there 247, and making sure that Deprivation of Liberty Safeguards is not factually incorrect or illegally in place.
Bill can have a life. I can have a life.
No help whatsoever