So hard to give in to the inevitable .

[secrets22]

My wonderful husband,best friend and confident is now in Southmead Hospital and the doctor told me this will be his last year ,it could be days,weeks,months before the final curtain.

I visit every day and I have to admit the hospital is truly wonderful but I have made it clear that they dare not discharge him until things are in place to give me far greater help, as they do have a Duty of care.

Should he be well enough I do want him to end his days at home,the place that he loves but I cannot go on as I have been for the past 5 years with practically no help at all.

I told the doctor you can have a team at the hospital to assess him for CHC (a service he has previously been denied) but for heavens sake how ill do you have to be to get this help,he has dementia no mobility,incontinent,not eating or drinking,and not talking.

I am standing my ground and will not take no for an answer,and I will not allow him to be discharged unless my conditions are addressed and followed through.

I have battled on all these years and got nowhere,but now I have got tough and will not be sidelined again.

I have studied all the legal avenues and they cannot just do what they wish on a whim,we do have rights,and they have a Duty of Care.

I will take no more shate from those sat around a table deciding ones fate.

[Lynd]

Hello Secrets

So sad your husband has to be in hospital but at long last you now have the opportunity to get the help you have been fighting for.

Hope you are now resting yourself x

[MAS_Nurse]

Hello secrets22,

We are very sorry to hear about your situation but it's good that you are pleased with the hospital. As Lynd has said we hope you are now resting yourself as much as possible under the circumstances. Please keep us posted.

Our thoughts are with you and David.

MAS Nurse & Moderator

[Jennymary]

Hi Secrets, keep standing your ground and hopefully the hospital will put a care package in place for you both, I'm going to send you a message with info I don't want to be made public, I'm sure you'll understand when you read it x

[sassy59]

Hello dear secrets, I’m really sorry to hear about your lovely husband but so pleased he’s being looked after at long last.

You stand your ground and never give up. You’re totally exhausted and deserve lots of help. It is your right as you’ve waited too long for help that never came.

I wish you strength and send love and hugs. Xxxxx

[Hidden]

Hi secrets22,

First of all my commiserations that you have now reached this point with your beloved husband. It's such a hard and inevitable place to be and you need courage and determination going forward. And I must say, it sounds as if you have found that. Well done for deciding to stand your ground and push hard for the help you so badly need. Everything you are doing is done through love for your husband but also love for yourself, because you can't go on being a one-person machine. And it doesn't help, because if you do, you are seen as being able to cope. So I wish you every success with your struggle to get done all that needs to be done. Very best wishes.

[Hellebelle]

Hi, I am so sorry about your predicament. It is so common. Please stick it out. CHC will have to come into play as you cannot care for him alone. It makes me so angry that families and particularly partners are just expected to cope, without the people making those decisions having any understanding of how stressful and gruelling this can be, however much you love the person .

We are in a similar position. We have been waiting weeks for a care package with my dad stuck in a hospice. The funding has eventually been agreed but there are no care agencies so far who have agreed to do the work. How did we get to this state? My poor mum and dad, both in their 80s wanting to spend my dad's last few days/months together at home, being denied because of lack of carers.

I send you lots of love and strength for your struggle. I hope you husband gets home with the care he needs. Helen xx

[doglington]

I was in the same situation with my husband. I said I really wanted to have him home but only with a full support team.

We had an excellent palliative team until he died 2 months later.

Good luck.

[katieoxo60]

Well done secrets22, you have done a great job now its time for you to be looked after so you can care for your husband in his last days and have quality time with him. Would you not consider a hospice ? , you've earn't the right. This can also help you to let go before the time comes. They owe a duty of care to you also for practical and emotional needs. You sound a bit like me this month, I,ve been fighting to have duty of care recognised for years and have cared for two relatives (husband & father-in-law ) in their final days, but it looks like I will like you have to fight again in my final days for what is after all our right. Stand your ground other people get special beds , care workers, macmillan nurses, home visits from GP practice, domicillary help often at very short notice. Take care , look after yourself and hopefully your husband will be cared for for as long as needs be in his final days in a dignified way.

[Yatzy]

All the best to you, secrets22. I know how hard it is getting helpful care into place, but keep pushing. You have a scrap of time just now, hospital visiting apart, to try to drive things forward. I’ve found this is a good time to exert a bit of insistence. I’m on my third round now, after I learnt the ropes with my dad, in old age and with many health issues, then carried on for my younger sister at a terminal stage of breast cancer, and now my mum, 99 and housebound. It doesn’t get easier, but you learn to persist. It’s a huge help when your efforts pay off though. Good luck to you and your husband 💕🌸

[XSitch38]

I fully concur with all comments secrets22. So sorry to hear about your husband's diagnosis now, but you must insist either hospice care or an appropriate care package be put in place to protect yourself as much as him. Make it known to the doctors in hospital what you have been doing up until now, and say it can't continue like that or they will have to find you a bed in the hospital too. As others have said, use this time to recharge your batteries in amongst hospital visits and everyday chores, so that you are in a better emotional place to fight your corner, as well as your husband's. It is criminal that in this day and age we are not able to pass away with the care and dignity set down in the guidelines set out by the NHS. We as carers are being failed time and time again, and it's about time the powers that be sat up and took notice and not take advantage of our caring nature. That in itself I feel is abuse, and that others are abusing the system that we so desperately rely on. I could go on.... Take care and am sending supportive hugs and wishes to you.

[Bella395]

Secrets22 - this is a difficult time for you but I hope that you are finally getting some rest. Why has your husband been admitted to hospital? The reason that I ask is you mentioned that the doctor has said his condition is terminal and in these cases fast track Continuing Health Care funding comes in. More information here:

caretobedifferent.co.uk/nhs...

[AliBee1]

Good on you. They should fast track him and hopefully your wishes will be fulfilled and you will have him home with funding for the help you need. In the meantime it is good to hear that Southmead are caring for him well. Please keep us updated. Good luck. My CHC appeal goes in tomorrow. Big hug from about 30 miles away. AliBee

[Lorrainemally]

Hi there, my mum is in hospital as well right now she had a seizure last Wednesday. Mum has Aklzhiemers and Vascular Dementia and is 92 years of age. I have been looking after her since diagnosis 6 years ago although I have been living back in the family home with her for nearly 16 years now, I have up my job to look after her. I also,have asked about CHC care funding but no one is yet to get back to me, when you take on a family members care like this it seems you literally get dropped after diagnosis and you literally have to fight everyone for anything so I get where your coming from. Lorraine

[Elephantstraw]

My heart goes out to you, having to fight for everything, do not give up, you must take care of yourself too, keep at it and love and hugs to you

[Bella395]

Secrets22 - how is your husband? Is he recovering from the illness that caused him to be admitted to hospital? Are you feeling any better for having a break from caring? Hope so. Also hope that the admission had given you time to consider the way forward if/when he comes home.