Hospital planning to send dad home with catheter.

[SMBeach]

I can’t quite believe this and really hoping it doesn’t happen. The doctor from hospital told me dads cystoscopy went well. We know there’s a kidney stone but they plan to let it come out on its own as it’s very close to the bladder already. They have removed the catheter which dad has had for 6 days. They hope to see him manage to wee by himself naturally over the next few days. If he can’t (not sure why he wouldn’t), then they will go back to inserting a catheter again.

Dad is 80, very frail and has Alzheimer’s. On top of this he hears nasty voices which make him extremely distressed. The voices remark on how old he looks and laugh at him when he attempts to wear incontinence pants or when he’s in the bath, mocking him. They threaten him physically. Dad doesn’t just get very distressed and frightened and fearful by the voices. He also gets angry. There’s only so much he can take. He lives alone with no family nearby.

I don’t think he could manage this. His bed is a make shift bed of mattresses he’s dragged from another bed which make the bed too high. The mattresses are too wide and too long for the bed. They slope over the edges towards the floor so he could fall. He’ll certainly struggle to get into bed with a catheter in place. He will most likely become very depressed too with that attached to him at home.

The doctor said they’d make sure he had adequate care at home first but I can’t see how it could be adequate. 4 visits a day I’m sure is the maximum and he’d need carers to empty the bag for him. I told hospital he may end up pulling it out. They said he hasn’t attempted to do that here in hospital but I pointed out to them he was pulling at the thing in his arm where medication is administered when I was visiting.

Also, the environment is different. There are other people in the ward in similar situations, and all have round the clock care as required.

Now it may well be that dad manages to wee without the catheter and all my worries will be forgotten but I’m really concerned it doesn’t go that way. Social services have told me to keep them updated so I’m going to tell them I’m not happy with that suggestion. Luckily the lady from social services has been round dads house and can see the hoarding that’s going on and she herself said that was her main concern. She also commented on the height of the bed and asked how he gets up there. It’s not as high as I’m making it sound but it’s a good bit higher than the average divan.

Has anyone any suggestions on how I make sure dad doesn’t go home wearing a catheter? It’s not easy speaking with anyone at hospital. I seem to get passed around. I actually feel like I’m interrupting their day when I call. Right now I also can’t get through to dad on his hospital bedside phone either. No doubt he’s not returned it fully to the cradle but feel I’m wasting nurses time when I ask them to check the phone so I can speak with him. He’d have his mobile with him had it not taken me 3 days to find it then discover he’d disabled it then spent hours via iTunes getting it deleted then unable to do the final part because dad didn’t know his Apple ID. So we rely on the hospital bedside phone for now.

Dads quite settled in hospital and I think he’s kind of enjoying being there. Even the doctor said he was settled but if there’s one way to unsettle him, it will be to send him home wearing a catheter with only himself and his own mind for company.

 

[Grannie G]

Hello @SMBeach

I agree it's totally inappropriate for your dad to be sent home with Dementia , kidney stones and a catheter

My father had gravel in the kidneys, not even a stone, and it was extremely painful for him to pass it.

I understand it is not possible to keep your dad in hospital if there is no further treatment available for him because of the shortage of hospital beds but if he is so happy and contented in that environment , have you considered transferring him from hospital into residential care?

It would be much less distressing for him to be transferred directly than going home and then needing to be moved again.

 

[Frank24]

Sounds like time ❤️ if residential care. I’m sorry. Will you Dad be self funding? Sounds rude but I am wondering about your next step?

 

[SERENA50]

I can’t quite believe this and really hoping it doesn’t happen. The doctor from hospital told me dads cystoscopy went well. We know there’s a kidney stone but they plan to let it come out on its own as it’s very close to the bladder already. They have removed the catheter which dad has had for 6 days. They hope to see him manage to wee by himself naturally over the next few days. If he can’t (not sure why he wouldn’t), then they will go back to inserting a catheter again.

Dad is 80, very frail and has Alzheimer’s. On top of this he hears nasty voices which make him extremely distressed. The voices remark on how old he looks and laugh at him when he attempts to wear incontinence pants or when he’s in the bath, mocking him. They threaten him physically. Dad doesn’t just get very distressed and frightened and fearful by the voices. He also gets angry. There’s only so much he can take. He lives alone with no family nearby.

I don’t think he could manage this. His bed is a make shift bed of mattresses he’s dragged from another bed which make the bed too high. The mattresses are too wide and too long for the bed. They slope over the edges towards the floor so he could fall. He’ll certainly struggle to get into bed with a catheter in place. He will most likely become very depressed too with that attached to him at home.

The doctor said they’d make sure he had adequate care at home first but I can’t see how it could be adequate. 4 visits a day I’m sure is the maximum and he’d need carers to empty the bag for him. I told hospital he may end up pulling it out. They said he hasn’t attempted to do that here in hospital but I pointed out to them he was pulling at the thing in his arm where medication is administered when I was visiting.

Also, the environment is different. There are other people in the ward in similar situations, and all have round the clock care as required.

Now it may well be that dad manages to wee without the catheter and all my worries will be forgotten but I’m really concerned it doesn’t go that way. Social services have told me to keep them updated so I’m going to tell them I’m not happy with that suggestion. Luckily the lady from social services has been round dads house and can see the hoarding that’s going on and she herself said that was her main concern. She also commented on the height of the bed and asked how he gets up there. It’s not as high as I’m making it sound but it’s a good bit higher than the average divan.

Has anyone any suggestions on how I make sure dad doesn’t go home wearing a catheter? It’s not easy speaking with anyone at hospital. I seem to get passed around. I actually feel like I’m interrupting their day when I call. Right now I also can’t get through to dad on his hospital bedside phone either. No doubt he’s not returned it fully to the cradle but feel I’m wasting nurses time when I ask them to check the phone so I can speak with him. He’d have his mobile with him had it not taken me 3 days to find it then discover he’d disabled it then spent hours via iTunes getting it deleted then unable to do the final part because dad didn’t know his Apple ID. So we rely on the hospital bedside phone for now.

Dads quite settled in hospital and I think he’s kind of enjoying being there. Even the doctor said he was settled but if there’s one way to unsettle him, it will be to send him home wearing a catheter with only himself and his own mind for company.

Hi

Four calls a day seems to be a favourite thing that gets suggested and you have to stay really strong on reasons why that cannot happen but what about overnight? and in between care calls left alone with catheter ? We actually had a social worker say to us that if Dad fell say at 2am then it was only till 7am when the care turned up? we said to this particular person would you want your elderly parent living alone to be on the floor for 'just five hours' and what if care didn't turn up?..... If you can see the reasons why this will not work, stick to your guns with it.... I would suggest respite and then take it from there. Incidentally our Dad ended up in emergency short term care after hospital because we were pushed into accepting something that wasn't really suitable and also because Dad refused to go into respite as well. We have found a residential place for him now and he will be transferring there soon.

 

[SMBeach]

Hi everyone. I’d prefer he went into residential care rather than home alone. My main worry then would be the care home. I’ve watched programmes in abuse/neglect and visited a couple of care homes and it really does worry me that he won’t be looked after properly. I’m going to look at more care homes down my way in Kent as I haven’t got the time or money to keep going to Scotland. I’ve googled lots and there’s about 3 I like the sound off. But without seeing them or knowing anyone who can tell me about their reputation, it’s difficult. I just spent £1,000 fir the ) days I had in Scotland and on top of the £1,000 cost I wasn’t able to earn a penny. I’m self employed, single parent, 3 kids, 2 dogs etc. so ideally I’d rather dad was down here. I couldn’t afford to take the kids to meet him (they’re teens now) as I’d have to pay for 3 extra train tickets, and least one extra hotel room. I have to rent a car every time I visit too. Whether dad will agree to come down south I’m not sure. I never get a clear answer from him. As long as he doesn’t agree to coming down here with a view to manipulating things when he is here to get into my home. Lol. I had him for a year and it was the worst year of my life, and my children’s. He has paranoia and hears voices tok so it’s not just the Alzheimer’s we have to live with. I emailed the social worker last night and explained my reasons for not agreeing to dad being sent home with a catheter. I just have to hope that dad manages without the catheter then that’s one less thing to worry about.

He owns his own property although has outstanding mortgage on it. He has healthy cash in the bank but that wouldn’t last more than 5 or 6 weeks in a care home. His house is jam packed full of stuff. I’d need to go and quits literally search for important documents, photos and sentimental stuff. I wouldn’t know where to begin and it would take weeks on my own. My brother who is just 6 miles from dad won’t help me and won’t visit dad so it’s all on my shoulders. And that brother doesn’t have children or pets or travel or cost involved. I dint speak to him as a result of this. Shame as he’s always been a lovely brother who wears his heart in his sleeve. Anyway. I’m dribbling in here. I’ll wait to hear what the social worker says and now I need to figure out how to get a mobile phone to dad so we can keep contact as that must be upsetting him too.

 

[Sarasa]

It's a shame your brother won't help, but I guess he has his reasons as it sounds trying to do things for your dad is very difficult.
Yes there are dreadful stories about care homes, but most are at least acceptable and many are really good. I'd go and have a look at the ones you've earmarked and see what you think. You really need to get a feel for a place. What suits one person won't another, but there will be at least one that you like will be OK.
Certainly it sounds as though he needs far more help than just four care visits a day, and even if you could afford to keep dashing up to Scotland, that is just too far away to be sensible. Mum was only 140 miles away from me, but I realised that was too far and moved her twenty minutes walk away from me.

 

[Jessbow]

For every bad home, there are many good ones.Bad ones makes the news, good ones dontbecause they have no need to.

 

[SMBeach]

Thank you. That’s reassuring. I know for many it’s a staffing issue rather than not being good. If dad doesn’t need a catheter at home then I think he’s better there than a care home right now but time for me to discuss those options with him when he’s back home. I’m more anxious because I can’t contact him. When he’s home I can at least call him and have time to arrange a new phone for him.

 

[Jaded'n'faded]

If he goes home, there's going to be an accident, whether or not he has the catheter, umpteen carers or whatever. He will be on his own at night, he's very frail, he has Alzheimer's, he hears voices, his bed is too high...

Need I go on?

Why not push for a discharge-to-assess bed to see how he goes on with/without the catheter and meanwhile, find him a care home near you. You can explore other options as much as you want but honestly, anything else is going to fail. And you can't keep going back and forth to Scotland - it's unsustainable.

 

[jugglingmum]

I agree with @Jaded'n'faded 's comments. Based on your posts over the last few months, your dad simply isn't safe at home and your 500 miles away and can't get there easily. He could end up lying on the floor for hours.

This needs to be about his needs not his wants, he might appear to have capacity but if he doesn't understand the implications of his actions eg putting lots of heaters on and then using a fan to cool his lucozade - this sort of behaviour can be used to illustrate a lack of capacity to a social worker. It's time to start making decisions for him.

I think we all romantacise what we want for our parents, I certainly did initially, but dementia isn't pleasant and hard decisions have to be made.

I think pushing for a discharge to assess bed (or the Scottish equivalent) would be the optimum decision. Once things are sorted you could then move him to a care home near you. YOu need to use 'vulnerable adult' 'failed discharge' to any one you speak to reiterating he isn't safe at home.

If you hadn't been at your dad's at the time would he have gone to hospital when he did?

Dads quite settled in hospital and I think he’s kind of enjoying being there.

If he's settled in hospital he's likely to settle in a care home.

If he's mucked up his phone once he's going to do it again, so there's little point getting a phone to him. I suspect your dad is very close to being unable to use a phone at all based on the issues with the heating.

I used an independent social worker to find a care home for mum a year ago, I simply didn't have time with work and everything else. (mum had been in sheltered extra care for 8 years, worked brilliantly for her but I don't think it would work for your dad with his paranoia)

As it was local to me I chose to look at the homes myself, but the independent social worker offered to do this, and also would have arranged to move my mum from her sheltered extra care to the care home if need be. Capacity wasn't in question, my mum had long since lost capacity but independent social workers aren't pushing a finance agenda of 4 care visits as it's cheaper.

Obviously the cost came out of mum's money, not mine. It was equivalent of 2 days in a care home so I thought value for money.

I think you hold LPA for your dad and you need to make sure you aren't paying for anything your dad should, and if the only reason you travelled to Scotland was to discharge your LPA role I think there is a case for taking the cost from your dad.

When I travelled back to mum's house to clear it I took the petrol money from mum's money, as it was as LPA I was clearing and selling the house (I moved mum near me when she had a crisis, but never contemplated her living with me).

My mum was a hoarder, I only had time to find important financial documents, unfortunately sentimental/photos had to go out of the window, about which I remain sad but accepting 8 years later. I did some clearing myself, the record was 7 skips in a day. I drove 4 hours down after work and 4 hours back after spending a day clearing, going every 3 weeks as any more was too much.

You have a lot on your plate and the only way you will manage to navigate this is to make it work for you, as you just haven't got the time to do anything else. This means getting dad into care at this point in time.

Please step back and look after you.

 

[SMBeach]

I’m all for dad going into a good care home. I think he’s even warming to the idea. The social worker said dad may not be eligible for care home as the clutter and bed height can be removed/changed. She did ask me if I felt dad had mental capacity and I said some days yes, other days no. 🤷🏻‍♀️ Is be happy with him in a home and I’m going to look at those down my way.

 

[SAP]

It’s not up to you to decide if he has mental capacity, it’s up to a medical professional or social worker. So if the sw is asking you there is possibly already a question over this. Would you be happy to have the sw carry out an assessment on his capacity? If he doesn’t have capacity then how on earth can he manage his home and health needs?
I challenged this when my mum, otherwise fit and well ended up in hospital as she had wandered far from home. I was 300 miles away at the time and challenged the discharge the basis that it was not a safe discharge as there was no one to help her, she couldn’t call for help because couldn’t use the phone anymore and she would be back in hospital in no time due to the DRs decision. It’s worth considering if this may be a way forward.
Mum had full time care at home which was easy as she is self funding. 18 months ago I moved her near to me in a care home and honestly this has made things so much easier, especially when there are the usual dementia curve balls thrown our way.

 

[jugglingmum]

The social worker said dad may not be eligible for care home as the clutter and bed height can be removed/changed.

This is a typical social worker response. You need to make it clear that a) you will not be doing this and b) your dad will just revert the situation back to what it is if someone else sorts it out for him.

She did ask me if I felt dad had mental capacity and I said some days yes, other days no. 🤷🏻‍♀️

Your dad might have mental capacity to chose what he eats or drinks but he only has mental capacity to understand his living situation if he understands fully the implications of a fall, can reliably operate a phone and call for help and safely and reliably prepare himself food and drink and understands the need for this on a consistent basis.

Social workers will push an agenda of 4 visits a day as it's the cheapest option, you need to decide how to play this and then be firm. If you want him to go to a care home, push for no capacity, and not safe etc, in writing.

I was told by a hospital that a doctor had discussed a decision to send my mum to rehab with my mum and she'd agreed. I pointed out she was too deaf to have actually heard the conversation, and that I didn't believe she had capacity to make this decision. I'd turned up to visit and mum was already in the discharge lounge.

 

[SMBeach]

Dad can phine using his house phone as it’s a dementia friendly phine. He just presses the button with the persons name on it. He does have a community alarm but doesn’t always wear it. He can microwave but doesn’t like microwave food. I do feel he’d be better in a hime but I’d like him to have a test for capacity. The social worker hasn’t met dad yet. She’s had a hood tour of the house but will visit dad when he’s home so I’ll ask her to do a capacity test.

 

[Dave63]

Would it be cynical of me to wonder if the current pressure to free up beds and reduce ambulance wait times at A&E is the cause of bad discharge decisions? Or has this always been an issue?

 

[try again]

Would it be cynical of me to wonder if the current pressure to free up beds and reduce ambulance wait times at A&E is the cause of bad discharge decisions? Or has this always been an issue?

Replace the "or" with "and"

 

[Dave63]

Replace the "or" with "and"

In which case I'm sure the politicians will now take the credit for 'fixing' it.

 

[Cats2022]

I have had the same issue my dads been sent home with a catheter it’s an absolute nightmare especially at night he is obsessed with it thinking it’s not attached right and it’s going to leak
The hospital have sent carers 4 times a day although the last visit is at 7 where they put the night bag on but he won’t go to bed at that time so I am having to go over about 10 to get him in bed to make sure he doesn’t fall carrying the blinking thing and he’s in bed safe , so this is an added visit for me it’s exhausting also having to constantly explain why he’s got it on
There is also the fear that he is going to fiddle with it and it will leak all over
He’s been up in the early hours of the morning stressing about it and one night he managed to get the night bag off I don’t know how but it’s definitely making his Alzheimer’s worse

 

[canary]

Hi @Cats2022
My OH has a catheter and yes, its a pain. There have also been a few "malfunctions". so may I suggest the following
Get a waterproof mattress cover (or better still, two so you can put a clean on on while the other one is washed) so that the mattress is kept dry and also get a couple of kylie sheets which can absorb a large amount of liquid. I havent found I need to change them every day, but they have saved the day on several occasions, so they are there just in case.

OH has a cylinder valve that slides from side to side rather than a lever valve. I found that the cylinder valve is harder to fiddle with and less likely to catch on things. He also has single use night bags with a cylinder valve and this valve has a little clip on it that you have to remove in order to empty it. The little clip will also fit on the day bag valve, so it will keep it shut unless the clip is removed. Its not completely foolproof, but makes it harder to open the valve by fiddling. The District Nurses organised the change from a lever valve (it seems to be the default) to a cylinder valve.

 

[Cats2022]

Hi @Cats2022
My OH has a catheter and yes, its a pain. There have also been a few "malfunctions". so may I suggest the following
Get a waterproof mattress cover (or better still, two so you can put a clean on on while the other one is washed) so that the mattress is kept dry and also get a couple of kylie sheets which can absorb a large amount of liquid. I havent found I need to change them every day, but they have saved the day on several occasions, so they are there just in case.

OH has a cylinder valve that slides from side to side rather than a lever valve. I found that the cylinder valve is harder to fiddle with and less likely to catch on things. He also has single use night bags with a cylinder valve and this valve has a little clip on it that you have to remove in order to empty it. The little clip will also fit on the day bag valve, so it will keep it shut unless the clip is removed. Its not completely foolproof, but makes it harder to open the valve by fiddling. The District Nurses organised the change from a lever valve (it seems to be the default) to a cylinder valve.

Thank you so much for this I will speak to the district nurse I think they are coming next week to change something!The clip sounds safer
I will get some of those sheets too
I was annoyed the other day when the enablement worker had shown my dad how to empty the day bag ( he had asked)with the lever and she had wrote in the book he did it confidently!
My heart was in my mouth when I read that he’s not capable of emptying it and wouldn’t remember the correct way to do it
I’m sure they aren’t dementia trained or simply don’t read the notes to find out what issues they have anyway they have all been told now not to show him if he asks
I just dread night time he just can’t settle with it