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.

Be very aware that the hospital will try everything to discharge to home with carers especially if that is what he indicates he wants to happen. When they start mentioning discharge insist on a meeting with the discharge team and be very firm that you have no way of caring for him because of ????? and your mother due to age/health will also be unable to cope. Make sure you constantly mention the words unsafe discharge and that they have a duty of care. I also had all these points written down stating that any discharge they made apart from to a care home was unsuitable and that I would hold them liable for any issues that arose from subsequently discharging to home. Surprisingly this seemed to change their whole attitude and discharge was finally made to a suitable care facility.

@Userccjlnhibibljn8 ignore this if it's just another burden, but has he ever been seen by a speech therapist to try and come up with some strategies to help you understand him? I'm a SALT working with older adults. If you would like a couple of general ides then do PM me but the chances are you are already doing a lot of things that help so don't bother with this if you have enough on your plate.

Hospices are not long term residences in the way care homes are - they operate on the basis of an average 2 week stay before discharge to somewhere else.

At this stage of the admission I think you would benefit from asking the medical team what they think a realistic outcome of the admission is - they do sometimes get sucked in to trying to fix things that aren't fixable - whether your dad is going to return to his baseline and make it clear that even at baseline he wasn't managing at home.

Let him chose - and he is doing.
he has had enough.

does he have money ? In which case act fast. Find a nice nursing home that will take him ( and your mum on a temp basis if you can ) and allow him the care he needs in a homely place to the natural end of his life x

if not fight for nhs continuing care placement for same or hospice. An acute ward isn’t a place to die - though some elderly care wards are good.

24hr care at home is possible but again likely only to happen if you pay. You will need shifts of waking carers. We had waking night and 24hr live in for mum. It was challenging. Stupidly I didn’t get that 24hr carers need breaks… so I had to be there as well.

pm me if you like. Have now “ managed “ care for 2 lots of parents through to end of life

And huge hugs to you x

my experience of SALT is limited but thicker fluids are often recommended in cases like these and are horrible to drink. Do you have any tips to help them be accepted.

FIL had a dodgy swallow and thickened fluids put him off everything . Smoothies were C a bit better. But the banned ice cream “ because it’s a thin fluid” at the point that a few spoons was all he would eat …argh. Took a lot of effort to get it “ re authorised “ even when LPOA happy to accept risk on behalf of patient preference

Keep in the loop with what hospital are doing and timetables. It is more useful to visit during the week/office hours if you can as the relevant people are around. Try to research or at least get a list of care homes that would work logistically, either for you or your mum. Would this be the time to consider them both moving somewhere together?

Thank you everyone for your answers. Late response as I have been a bit preoccupied. I managed to talk to a Dr yesterday, and understand their plan for him which was helpful. He seemed better in himself, which was encouraging, at times very aware and at others confused. I’m starting to formulate a plan, and encourage them to think about care home. I’ll look through everything above again and appreciate all your advice.

I hope everything works out for you OP and I'm so very sorry you're dealing with so much.

My advice would be to keep on at everyone about what they're medically treating and when discharge will be possible.

My 92 year old dad spent 7 weeks in hospital following a couple of falls, fracturing his ribs. They said a 2 or 3 nights stay would stabilise him. As pp have said, they tried to fix underlying problems that I now see really were unfixable and he ended up with other infections, very confused and died a couple of weeks ago. I am riven with guilt that I didn't question what was going on, and push for discharge sooner. A care package was in place and delivery of a hospital bed scheduled, but too late by then.

I try to comfort myself that he really wouldn't have wanted to have to be cared for and made his choice, but if I'd pushed more after he'd been in at that 7/10 day stage, he'd probably be at home now, still looking after himself with support from me. He walked into the hospital for an x-ray and he was cremated on Friday. I miss him so much.

I am so sorry. My Mum went into hospital after a fall, was discharged to a care home for rehabilitation and died shortly after. It was very tough and although I am glad she did not linger, I wish I had done more.

I’m so very sorry for your loss. You didn’t let him down. You clearly love him very much.

The medical team who didn’t focus more on what mattered to him and how to achieve that did let him down but the systems are so very focused on treatment at all costs and so painfully slow.

I suspect if you had fought then not much would have changed other than you having a fight and that may have taken away from your time with your dad.

Please be kind to yourself. Take care.

FiveShelties and Questionary thank you so much for your kind words. You are right about treatment at all costs - we just wanted to know dad hadn't sustained any damage to internal organs and get some decent pain killers. But then blood tests show low this and high that and you trust that they're doing the right thing.

I've much to be grateful for - I'm in my sixties now so have had my dad all those years and I still have my lovely mum. She's coping so well having lost him. I need to concentrate on looking after her now.

@EmileFord Don't forget to take care of yourself as well💐

Hello, coming in with a quick update. We are hopeful that we will be able to sort my father's discharge to a nursing home this week, and then get going on physio etc hopefully with a goal (for him to believe in at least) of him getting back home. My mother is supportive of this, my father less so, I think he believes he can just go back home and everything will be as it was, however after 4 weeks in bed his mobility is shot. Thank you for all your advice and input, it is so hard to having to think about the 'least bad' solution.

That's good to hear OP. The physio is really important - I hope your dad's mobility and general health improve in the nursing home.

@Helenloveslee4eva your first question should always be 'what evidence do you have that thickened fluids are helping in this situation, and what do you think they are helping with'?

Feel free to PM me x

Wanted to come in with an update. My father has been in a nursing home since just before Christmas. It has not been a success. We struggled to get physio for him due to the Christmas period, so he has not walked now for 2 months. We now have physio coming, but he is not doing any of the exercises un prompted. He is visibly distressed at times, and it seems is very shut down for a lot of the time. When I saw him at the weekend he I think was aware I was there but did not open his eyes. I got a little bit of conversation the day before. He is often refusing his meds and is hardly eating. I honestly don't know what to do - I don't know if looking for a different home will help, but I can't see him coming home, there is no chance my mother could cope, and unless I give up my job, and rehome my dogs I can't get there more often than once every week or so. I am battling with feeling so selfish that I am just letting him rot, vs knowing that nothing I can do will help. I think there must be a middle ground, can anyone help me find it?

I'm really sorry to hear that @Userccjlnhibibljn8. I looked back at your previous posts and I do wonder now if your dad has perhaps had enough. It really wasn't realistic for him to go home but he's not thriving in the home either. Not eating could be a sign that he's turning his face to the wall.

I am so sorry to hear this @Userccjlnhibibljn8

Unfortunately you can only effectively do physio for someone who can remember and is motivated to do the prescribed exercises, and has sufficient energy to do them. It sounds sadly like your DF is past this point.

Not eating and refusing meds is often a sign that a person is starting the last phase of their life.

In terms of what you can do: medically make sure that his GP has reviewed his medication and that his Parkinson's team have reviewed his medication. Also make sure that plans are clear of what to do should he start his final days.

But the biggest thing you can do right now is just be with him, as he is, sharing his company with no expectations of either you or him trying to do anything, just sharing time and love.

Having worked in hospitals for many years, refusing medical and food generally is a sign of moving to the last phase of life. I would feel comfort if I knew the person was safe, clean and comfortable, offered food and hydration, offered medication including pain relief.

You aren’t ‘leaving him to rot’. Assuming you feel the home are caring for him appropriately in that he is clean and rested and being offered food and drink regularly and they are ensuring his dignity and treating him with respect then he is just declining in a very normal and expected way for an elderly man.

The last phase of life- dying- is often precipitated by an event like an infection or a fall or an injury but it is still a natural and often fairly predictable process.

Less energy, less interest in things or people who previously provided pleasure, reducing appetite. All a normal sign of the phases of dying.

As time gets shorter, people are less able to care for themselves, sleep much more. Even simple things like swallowing become difficult and you may find periods of sleep are very deep and they seem hard to rouse.

This is normal and it’s kind and appropriate to just provide love and support but not too much intervention that would be burdensome.

Hold his hand and tell him you love him.

And please don’t feel guilty. He’s not on a trolley in a corridor outside a ward or struggling at home at risk of falls. He’s being cared for and he’s safe and warm.

Please do make sure that the home alongside his GP has plans for comfort care, an end of life plan for his medication especially his Parkinson’s medication (often need changing to a patch when they can’t swallow) and a do not resuscitate form. The last thing he needs is panic and unwanted and unnecessary intervention especially out of hours.

Oh my goodness you poor thing going through the bereavement of your husband as well as the worry of your beloved father.
Sending hugs
My gran is a similar age and was adament she didn't want to go in a nursing home. She refused to take medication unless a nurse kind of pushed her to. She was losing her marbles a bit too and sometimes fell over. My mum got a cleaner for her and some carers to visit her home regularly. One day she fell over in her bathroom and a carer found her some time later very confused on the floor.💔Had she been left there we think she would have passed away and I think the confusion made it a less traumatic fall like she was out of it.
She had a urinary infection and went to hospital where she was given more drugs to survive when in my honest opining doctors should have let her pass as that's what she wanted. My mum then put her in a nursing home and my gran kept thinking she'd go back home. She hated being threre to be honest and actually my mum decided it wasn't very good as they didn't brush her teeth for a week (toothbrush still in packaging!) and the staff were very patronising to her. She was then moved to a really nice nursing home with very good vibes. We went out for lunch a few times and she was on good form and had good humour but my mum said she kept saying when will it be her turn to go.💔 She has deteriorated massively though, keeps falling over, has to wear a nappy, urine infections mean she keeps being delusional and paranoid and she is miserable and literally asks to be given a pill to end it all every time anyone visits. She now can't go out at all and is confused I know this is a horrible picture but I want to say that at this point I personally feel like my grans time was when she fell over in the bathroom. She would have slipped away confused and unaware like she wanted but she's now had about three years of prolonged ill health. I'm not saying this to depress you more just to give you an idea of what can happen and the moral struggles everyone faces. Good luck tomorrow. 💔

Thank you for your kind and thoughtful replies. They have really helped. One foot in front of the other. I am having a weekend ‘off’ from doing my 3-4 hour drive to my parent’s town. It is good to have some time to recharge xx