93 year old father in hospital - what should we do?

[Userccjlnhibibljn8]

Hello
My father who is 93, with relatively advanced Parkinsons has been in hospital for the last 10 days. He's been falling increasinly often at home and had been through A&E several times before this. He seems to be shutting down, not eating or drinking unless we are there to feed him M&S sandwiches, sometimes refusing to take medication and is getting increasingly disorientated. There is no way he can be discharged to home, as my mother is 92 and unable to care for him, so I think the only option is to find a nursing home, or full time carers at the house. There's been no discussion about discharge yet, as his blood pressure is very unstable. I'm not easily able to get to the hospital until Monday (I was there last week) as it is my husband's funeral tomorrow.
Has anyone else been in this position? What did you do, fight for discharge and action, or accept that maybe this is him taking control of his path. I realise I am probably not able to think very clearly about this because of what has happened with my husband.

From my recent experience make sure there is a suitable plan in place before he leaves hospital. It does sound as if a nursing home would be a good option but how does your mother feel about that. I am sure she would want to visit a lot and how mobile is she?

Firstly, I am so sorry for the loss of your husband. With regards to your father, we've just been through a similar situation with FIL. He hated it in hospital and started to shut down. He was eventually discharged and a package of care was put into place by the home discharge team. Initially, he was provided with 72 hours worth of 24 hour care. That turned into 4 daily visits from crisis carers and daily visits from the district nurses as he has a catheter. We are having a meeting with social services to decide next steps, we want to put our own private care agency carers in, who we have used before and he knows well and we are hoping a social care assessment may assist with this. Other than that we will be looking at a nursing home but we know he'd prefer to be in his own home. There is help out there, you just have to push for it. I'm sorry you are going through such a difficult time.

Be prepared to go into battle. When they mention discharge, ask where he is being discharged to. Make it abundantly clear that you will not be taking him home to either your place or to your mother as he is not safe in either place and there is no suitable care in place. Ask them to locate suitable care for him outside of the home as there is no one physically or financially able to provide the level of care he would need in any other capacity.

I am so sorry OP for your loss.

I agree with everything @Fraaahnces has said. When both my Dad and then my Mum were in hospital, the only plan the hospital/social worker had was to just get them discharged. I thought the social worker was there to help but I was sadly mistaken.

Make sure you take care of yourself.

The sooner he's out of hospital the better for his mental state - the longer he stays, the higher the risk of hospital induced delirium. But it doesnt sound as if discharge home would be suitable.so ask about 'discharge to assess' (sometimes also called 'intermediate care').

This could get him a month or so NHS-funded care in a care home, with physio and OT, while his out-of-hospital needs are stabilised and assessed and longer term plans put in place.

Thanks all, I will plan for a battle. We are financially in a good position if stuff needs to be paid for, but equally I don’t want him ‘out of the system’. Or am I wrong with that?

@Userccjlnhibibljn8 I am so sorry for the loss of your husband. I would avoid at all costs any discharge home, at this stage carers will not even touch the sides. A ‘best interest’ meeting with the ward and social worker where it is made clear there is no way he can be sent home might get you to a point where they recommend nursing or care home. The staff we dealt with were brilliant and advised a facility that could cater for our father in the long term….so a facility able to cater for the very worst case scenario health wise. Discharge to access as mentioned is - Put simply, discharge to assess (D2A) is about funding and supporting people to leave hospital, when safe and appropriate to do so, and continuing their care and assessment out of hospital. They can then be assessed for their longer-term needs in the right place. Thoughts with you for tomorrow please keep us updated. Do you have family or friends to support you?

Hi! I recognise you from your thread about your husband.

Don't let the social worker discharge your father home. Just keep telling them point blank that there is nobody to care for him and that you cannot do any of it.

It sounds like you need to find a care home, pronto.

And come and join us on here:

https://www.mumsnet.com/talk/elderly_parents/5036546-so-bloody-exhausted-waiting-for-someone-to-die-3

You must feel under tremendous strain. I'm so sorry you lost your husband and that you're having to deal with this at the same time.

Is your mum capable of living on her own? My mum is a similar age and in a nursing home - there are two couples who are living there. I thought that would be easier for them than having one of them go in alone.

It does sound as though your dad has gone through enough and is accepting this is the end. It doesn't sound as though they will recommend he goes home - he doesn't sound well enough to leave hospital. Would your mum put up any objection to you looking for a nursing home for him? Put the word out with your friends - a recommendation is much easier than starting from scratch. If not maybe you could start an anonymous thread asking if anyone can recommend a nursing home in your area?

I am very sorry about your Husband, it must be a very difficult time for you.
You really must push back on SS, they will want him home with carers and with the best will in the world its not enough. My Mum was in a wheelchair and had Parkinsons and her carers came 4 times a day, it wasn't enough and they had her 82 year old partner with multiple health issues as part of her care plan!
The best and safest place for your Dad is in residential care.

Do you mean you can pay for private care?

I had my mum discharged from hospital to private care for two weeks till she was able to go home. She was medically fit but needed care.

You are kind of out of the system in England but not completely, in our case. So the things we were entitled to- eg an assessment of the home - were still carried out. but taking her out of the system took us off the urgent list.

they won't pay for much - but they still paid for a railing in the bathroom and at the front door.

a physio was sent to assess when she went home.

if you can pay to get him out of hospital when he is ready, I'd do that.

however, there is a battle for space in private care homes too. The first time we were lucky and got a place when needed. The second time was a two week wait.

they will visit your father in hospital to assess his needs.

does he have stairs and stairlift at home? Most of the carers I spoke with will not assist with stairs, understandably.

I'm so sorry you are experiencing all this. 💐

I am so sorry for your loss; this is a cruel burden for you.

If he has the funds to pay for private care (think £1000-2000/week) that is a massive advantage.

Can you ask the hospital for a realistic assessment of whether they think his bp will stabilise or not, and what they think will happen either way. In the meantime scout out nursing homes who could take him sooner rather than later, hopefully for respite and rehab?

Sorry about the loss of your husband. As your parents are so elderly I would gather that they have been together/married for a very long time. It is possible that your Mum will start to suffer from low mood if he moves into a nursing home even for a few weeks (which could turn into more). This happened to my PIL, MIL was hospitalised, FIL (Parkinsons) went downhill quickly. Previously, they had carers at home four times a day, it was not enough, they were washed and given breakfast when the carers arrived at various times in the morning, both incontinent and left wet and unclean until their next carers visit, other meals and bed time had to fit in around the care agency. We both work full time and did what we could. FIL went into a home to be properly cared for and when MIL was discharged she joined him. They moved into a more local home after several weeks. If they are together it is likely that they would settle into a home better and it will take a little bit of stress off you at what is already an incredibly difficult time. We had to sell their home to pay for their care costs but they are safe, well looked after and most importantly together.

Has he been assessed to have capacity? What does he want? As an elderly nurse his views are taken into account with what he wants if he has capacity.

Often we know that people won’t cope and will end up readmitted or worse but if despite continuous falls they have capacity and want to stay at home, even with no services, they have the right to make decisions that we know are unsafe.

In my hospital, discharge planning doesn’t start until someone is medically fit. Whilst they still have medical needs to be treated, not much happens. If he is in agreement that he needs more support and does have capacity, just mention to the hospital that you have social concerns and he can’t be discharged without a social assessment of his care needs as it would be an unsafe discharge

@Userccjlnhibibljn8 thinking of you today. Do come back when you feel ready and let us know how things are.

We've had changes since I last posted, elderly dad ended up being readmitted to hospital after a fall and has now been referred to the Frailty team. Does anyone know if this means they'll try and put him in some kind of home as we know he desperately doesn't want this, can they force him?

@Pilgrimgirl our Dad was seeing a fragility nurse before he went into hospital last year and once it was clear he was incontinent, unable to walk unaided with a frame and someone right behind him the ‘team’ OT, SW nurses etc all came together to say he needed full nursing care in a nursing home, absolutely not at home unless we were prepared to have full time care for him living in.

He wasn’t keen on a nursing home but I sold it to him as a better place to be for a while to avaoid keep being in and out of hospital which he hated. Finding somewhere I was advised to look at somewhere that would cater for him longer term so as not to have to move him again when he got worse.

A DoLs was put in place essentially taking away a decision from us https://www.scie.org.uk/mca/dols/at-a-glance/

Our mother didn’t want him in a home but even after assessments of their home she refused to make concessions such as a bed downstairs. If I had my time again I would have been much firmer 6 months earlier when Dad’s consultant had recommended that ‘it is time to face the fact Mr and Mrs (Name) we are at the stage that nursing acre is the only option’.

In fact Dad was not so resistant as reluctant but our mother went into a complete tailspin so we wasted months.

If you can try and get your head into a space where at this stage in life he will bounce back and forth from hospital. My Dad has not been ill or back in hospital for over a year now. He is settled, safe and seems very much less anxious. The home is not perfect to look at but the care is amazing, he is in a social place as opposed to isolated at home with my mother. It really is something I will never regret doing despite my mother and brother not agreeing. We can now see him and spend time with him.

@BlueLegume thank you so much for giving such a detailed reply. Our situation is exactly the same, he is doubly incontinent, cannot walk unaided, even with a frame. He has been in and out of hospital constantly recently and it's traumatic for him. I'm so glad to hear your dad is doing well in the nursing home.

@Userccjlnhibibljn8 I am also thinking of you and hope you are OK after today.

@Pilgrimgirl 🤗

Thank you everyone for your comments, I have a lot to look through and think about. I’ll be going to see him on Sunday/Monday and will try to see more about what is happening. He does have capacity, although it sometimes takes quite some time to work out what he is saying because of the Parkinson’s, I know he will want to go home, and I think if he went to a nursing home he would likely still be resistant to support (he won’t eat hospital food but eats M&S sandwiches and fruit when we are with him, and sometimes refuses medication) but I guess it would be somewhere where they could take more time for him.

I feel strongly if he went home the cycle would start again. He has been assessed by the fraility team at home.
i am also concerned for my mother as she has her own problems, she was exhausted looking after him, so at least now she is getting a bit of a break.

There has been no mention of discharge yet, but I am not sure what they think is going to get better for him in hospital.

I’ll update when I can. (Thank you also for your thoughts about yesterday, it went as well as a funeral can).

@TheShellBeach Thank you for recognising me. I will check into that thread.
(Mumsnet is an extraordinary place of support and connection in the right places!).

Can you ask if the palliative care team would assess him? They can help with family support and discharge. He might be suitable for a hospice.
his needs sounds quite complex with the PD and your recent bereavement would be relevant too.

I'm so sorry OP you have so much weighing heavy on you. You should be able to focus on your grief and your husbands funeral but must be overwhelmed with so much going on. I hope you have good support and I’m so sorry for your loss.

Oh OP, no advice, you’ve had a lot from more knowledgeable people, but just wanted to say I’m so sorry, what an awful time for you. Sending you big cuddles xx

@Userccjlnhibibljn8 I cannot imagine how much stress you are under at the moment. I struggled with both my Mum and Dad in hospital and it is really tough.

I am so sorry you have all this to do deal with at this time.💐