This is so hard

[Pashmina67]

My partner had a seizure in October last year, after being assessed there was nothing on head scans. While recovering in hospital he was totally confused, thought he was in prison, wanted out so they put him on a hold (a nurse has to have him in her eye line) various drugs later he started coming back (80%) we went on holiday which was a mistake the heat ect.

From April to July this year he's had 5 more seizures each time taking a big chunk of the lovely man away. He's now been diagnosed with rapid on set dementia. I care for him at home a nurse visits from hospital mental health team. The decline is heartbreaking, his behaviour is bizarre, he empties every draw, wardrobe, he is paranoid and has hallucinations. He's so agitated and frustrated, it's so contestant as every time he gets up you have to follow as he don't know what he's doing. I try to reason agree, show photos play music hold him, read to him. The most hard is he doesn't sleep more that a couple of hours, which means he's grumpy and I'm exhausted. I've installed cameras, pad locked front door as he got out with just a nappy and coat on. The Dr's are experimenting with all drugs to help calm him and help him sleep. They were working but GP was concerned he may get addicted!!! I politely pointed out in hospital he had nurses drs aides yet they injected him to calm him, now he's home with just me it don't really matter as he's not their problem. Everyday I wake up and watch him to see if he's coming back to me and every day he goes further away. He's took me round the world looked after me and is a proper gentleman. I promised I wouldn't put him in a home at this time I won't. I look in his eyes and see torment, its so sad.

I'm so sorry to read this. You sound like you're doing your absolute best to care for him. I don't know what to suggest other than getting on to GP to ask for support. Wishing you well 💐

You promised you wouldn't put him in a home when you didn't realise that to keep him safe you need to consider this.

Your husband when well would not have wanted you to exhaust yourself to keep him at home.

It's not safe for you, either.

Please ask your GP or the consultant to set up a care package for your husband and to assess your needs as a carer.

I am so sorry, it is a dreadful disease.

I’m so sorry to read this, the torment must be terrible. You sound like you are doing your absolute best for him. Please go to the GP and ask about support through adult social care, you need some help here xx

Well done for pointing out that the Hospital couldn't cope with several staff on the Ward.

I know that you've promised not to put him in a home but I think it might be time to reconsider this. If he is on a home you will have more opportunity to spend some quality time with him and your relationship with him might improve. I also doubt very much that before all this happened he would have wanted you to be his sole carer like this.

The other thing to consider is that many people end up in care after a crisis, either theirs or occasionally their carer's crisis. If this did happen you would probably have less control over where he was placed.

In your shoes I think I would ask the MH Team to prescribe him Melatonin, if they haven't already to see if that will help to get him to sleep. They may want to consider a sleeping pill instead, especially if he's that exhausted.

Please do ask for a Care Needs Assessment but be mindful that usually the time for when they recommend full time care is when they need supervision at night. Whilst you are doing an excellent job, you are one person and you can't function looking after him 24 hours a day forever

Ask for a Carer's Assessment for you too. If he's got a SW, get on to them. I called DMIL's SW daily when she needed more care until it was sorted.

Talking all of this through with one of the Admiral Nurses might help you to decide how to move forward in a way that's safe for both of you.

You need to reconsider on the issue of a care home. I know it is hard to hear, but caring for him yourself will destroy you both.

Some options

• can you afford a live in carer? It is possible to hire someone who does the night shift of care so you can sleep
• can you afford a care home yourself? It so, start looking because the good ones may have a waiting list. Better to know now what the options are than to have to pick a bad home in a crisis.
• is your partner eligible for NHS continuing care where the nhs pays for the nursing care. Not many are eligible but a patient who requires watching all the time might be. So do get an assessment.

Finally, if your partner is in a home that provides the basics of washing and overnight care, then you can visit every day and talk and be his partner not just an exhausted carer. So you can actually have a better relationship in that context than at home.

Great advice from parisetal. I just wanted to add that when you do start to look at homes, don't be fooled by the furnishings. The most expensive one near to us has a Gin Bar which looks gorgeous but is never open and they do very, very little in the way of activities. Whereas the cheapest one is shabby but all of the staff have been there for years and are very caring and they do activities with the residents.

I'm afraid i think you will destroy your own health like this. Two hours of sleep a night?? You may feel you would die for your partner but dying for him to prevent him going to a home when all that would mean is that he would immediately go to one anyway isn't a good idea. Can you recast the promise in your mind to 'I will never give up on you, I will make sure you get the best care I can find?'

You could try for some 24 hour live in care, it is occasionally being offered in the short term round our way as people recognise that it is a chance to see whether someone really can manage at home. Talk to the social services duty desk. But a good home that allows you to have at the very least the sleep you need for basic health may be the best option.

Thank you all so much, it is getting to the point now where it looks inevitable, the crisis team have asked southwark council for a care assessment & have already said due to the seizures medication he would need a care home. I've never been so close to an illness I've heard about even had a relation, but living 24/7 what a dreadful illness this is, bless you all for your time xx

It sounds as if an admission to a mental health ward to fully assess his needs and optimise his medication is needed.

From there you can have meetings with his medical and nursing team to establish whether continuing to care for him at home with an appropriate level of support (carers, day centres etc) is achievable or whether an appropriate care home placement is needed.

You’ve not said how old he is but specialist services for those with Young Onset Dementia (diagnosed before the age of 65) are available in some parts of the UK and can be a great source of help and support.

I wish you well, it’s a terrible illness xx

I've seen a few times where a move to full time care can be a positive thing. Our DMIL was certainly much more settled and happy. It will give you an opportunity to recover, with sleep and physically at first