Dad - 95

[The80sweregreat]

I just need to have a rant and also ask a question - maybe if anyone on here is a nurse or a doctor?
long story short, dad lives alone and has done for 7 years. Last few months since July been awful with a water infection ( UTI) nearly every two weeks. He is now on anti biotics every day - was given stronger ones on monday, but it appears he has developed an allergy to them, so currently not on anything ( came up in a rash)
showing signs of dementia - had a telephone assessment with me 3 weeks ago , but been waiting on home visit for him since August. ( the community health team)
When the infections are really bad, he has terrible dreams and delusions which he believes to be true. The dementia symptoms ( if that is what he has got) are not as bad when he hasnt got a UTI, but he is very up and down and every day is different.
He has a carer come in to heat up his dinner at lunchtime, but nothing else apart from his children - we have been run ragged with it all and none of us live close to him. He can cope with some things but lots of things he just cant manage.
Just wanted to know if its common for someone his age to have so many water infections? the nurse at the GP practice said it was uncommon for men to have this so often.
waiting on the results of a head MRI he had done this week - not for his kidneys though. He used to have to do a self catheter each week, but some weeks he forgets to do it , so that isnt helping at all and taking all these anti biotics cant be any good for him either. i could go on and on , but i do feel that the doctors he has seen just say ' its another infection' and thats that really. I am not saying that they are unhelpful or not concerned, but I do feel that we are banging our heads against a brick wall and not getting anywhere and we;re all at our wits end really!

Hi, my dad would be self funding as he has over the limit in savings, ( he hasnt a property, but he has been frugal and had some redundancy money in the past) i was surprised really as he has always paid his way in life and still paying rent and bills and so on, but never ever been one to spend anything and never had a car or fancy holidays or anything really! so he wouldnt get any help financially for years.

We managed to get a visit from a social worker today and she said that his savings would pay for 2 years in a care home or 4 years with 2 carers a day with a different company to the one he has already ( as they are pricey), but we would have to sort that out. more time and visits from them and on and on. My dad isnt a rich man, but he has been careful over the years and never claimed anything ( he does get AA) and a fairly good pension, so it wouldnt last that long really, but it would also soon all be spent in a south east care home.

We heard from the CMHT and there is an appointment for next wednesday. the MRI were back, showing signs of 'old age' but nothing that bad for a man of his age apparently. the doctor also changed him to Macrobid twice a day, so the carer can do one of those at lunchtime. its only a weeks worth though.

we still dont know why he is getting these infections - it is a mystery and the social worker said that the hospital should have hydrated him and given him anti biotics and observed him for a day or too and cleared up the infection but as this didnt happen, he is still harbouring a UTI which is causing all the delusions and weird behaviour. the whole time she was there ( for an hour) he was asleep.

She was nice and very helpful, but i still get the impression that we have to do it all. she did offer a weeks respite, but that would have to be paid for too - although she said they might be able to get rid of the infection by giving 24 hour care, which we can't ( not without one of us living with him or something and we cant do that)
My brother is very against a care home of any length of time - even though i think it might be a good idea in the short term, if only to give us a break from it all.
I am going away for a few days next week and i feel so guilty , but i need a break , its been a long 6 months. I am going up there again tomorrow as he has a man coming to take his blood between 9 and 3 so another day up there and i have a home to run and things to do for my own family and kids still at home too! The 'sandwich' generation is hard work. My brothers are good, but they have families and lives and seem to want him cared for, but they cant do it!

i am sorry to go on, my own husband has elderly parents of 91 with different problems and he works full time, so he doesnt really want to know! He wants me doing everything here too and i have been spending a lot of time not here. I can see us splitting up over it all, plus he has never been that keen on my dad and doesnt think that we are forceful enough with the authorities, we have tried though, its not easy and its put back onto the family all the time. as you probably know.
i am sorry to go on and on, nobody to talk to and i feel as if i am cracking up with it all!! ( not to mention the drive up and down to him, that is a nightmare )

Oh it's hard isn't it when you have parents to worry about and your own family to worry about too.

To be honest I think your brother needs to sit down and really think why he's so against your Dad going into a care home, when if it was just for some respite and to get your Dad over his UTI. The thing about care / nursing homes is that a lot of people have some really negative views on them (not helped by the media only ever focusing on the bad things you hear about them) but there are some really lovely ones, and I know a lot of people in your Dad's situation that really do so much better when they have people around 24 hours to look after them, and (especially when people have been living alone) really benefit from having people around again to talk to and things to do in the day again.

There's not really any way around the cost side of things though sadly. There is such a thing as Continuing Healthcare funding (also called CHC funding sometimes) but if I'm honest I very much doubt your Dad will qualify (you have to score as having high care needs in a multiple of areas like mobility, breathing, medication, behaviour, etc) as the criteria are so strict. But yeah care is really expensive I'm afraid. It's so sad when you know someone has saved all their life, and you know the money will go so quickly when care is needed, but there's no real way around it.

Oh and please don't feel guilty about having a break next week. I say to a lot of family members sometimes that 'this is a marathon, not a sprint' and you to have lo look after yourself in this process too and have a break sometimes or else you will burn out or have a breakdown.

Hi, thank you again for taking the time to reply - i am guessing your a busy mum and working , so its really nice for someone to read my huge missives and reply to me! the power of mumsnet.
i hope your okay too.
dad wasnt too bad today, he had some bloods done for the memory clinic next week and i managed to get him to drink and eat a bit more.
He seemed so much better and now on two antibiotics a day till wednesday.. very sleepy however.
he has this coming up and his flu jab and B12 jab and then the family and I are going to see his GP early november.
i feel as if we are making some progress now and may even consider respite, if we can find a place for a week that will take him in.,
i feel that the NHS should have done a bit more for him and maybe kept him in and hydrated him, but it didnt happen and have to chalk it up to experience.
I am so tired, i am peri menopausal and my moods are all over the place ( not sleeping ) and i am looking forwards to going away for a while.
thanks again, i hope you and your mum are also keeping well and coming to terms with losing your dad. x

new development, i am pushing it a little bit for dad to go for a week in november. however, my brothers are now saying that the NHS should sort out his infections ( if he gets another one after this course of anti bis) and ' he wont like it in there and we will all suffer' ( they havent said this, but this is what they mean) the closest home has had ' bad reviews' and although there are others, i am now getting the impression that they both think this is a bad idea. grrr.( i can see their point of view,, but i still think its a good idea and so does the social worker) men!!

Hmm, do you think they would be open to the idea of a trial run at respite and seeing how it goes? It may be a disaster, or it might really help, but I guess unless you try it then you'll never know. xx

I think you need to double check again with social services about the financial assessment as what your dad has to pay is on a sliding scale.

So anything above £23k ish and he has to pay the full lot. But once he falls below £23k then social services will start to contribute.

What is the social worker's assessment of his level of need and what services they feel he needs? (Because clearly 1 week of respite and 1 visit a day isn't cutting it) They have a duty to assess him and make Care recommendations even if he is a self funder.

I havent read her email yet, she sent it earlier.
She said about the finances.
Dadvwould have to pay etc.
My brothers are in their 60s and they are a bit ' the nhs should pay to clear up the infections' which i 'get' but they are being a bit deluded too. Not sure why, they know the nhs is on its knees and someone of 95 isnt a huge priority. It seems to be the principle, which i understand.

It just says that dad is self funding and she recommends the respite care, then 2 carers a day.
She was nice, but not much she could do really.

A weeks respite will give you a break but it won't solve the UTI problem. Can you ask the GP if there is a long term conditions/ complex conditions district nursing team he could be referred to?

The social worker is wrong if you are in England. The Care Act 2014 specifically puts a duty on local authorities to assist Self funders in finding and arranging appropriate care. It isn't good enough for them to turn up and say you have plenty of money so sort it out yourself.

I am an older adults social worker by the way not someone who has an axe to grind against social services!

Hatgirl, thank,you for your reply too. She just kept saying ' google this , or try this ' i got the impression this was because he was self funding.
She is going to speak to the GP, we are seeing him early november.
They have just dished out antibiotics since early july. The hospital wasnt interested either friday night. After four hours we got a scriipt he couldnt get as the pharmacy was shut at 9 pm.
The gp sent us to a and e, they didnt look convinced, didvthe badics and said it was a UTI. His 6 th one.
He has to self catheter, but he hasnt done this for a few days and the CTT said that a district nurse wouldnt be sent to do this.

Did the basic checks i meant.

Hi OP just reading your thread and my heart goes out to you - my DDad passed away 5 years ago in his mid 70s with dementia and reading your post brings back many emotions.
One thing I would say is your Df is very lucky to have three loving children getting involved in his care even if you aren't all on the same page at the same time . In my experience it's inevitable you will have different views . My Dsis and I certainly did .
We fought to keep DDad at home because that's what he wanted - although it was awful at the time I can see now that I was lucky that at the time I had a supportive DH but no children of my own and I think the funding situation has worsened. We got some help with live in care and this worked well for us all until his death .
Anyway you have had great support from kitkat- I just wanted to add one possibly random thing that might help with the UTIs and sorry if you have already - there is a supplement called D mannose that might help - I haven't used it but one of my friends has solved her own recurring UTIs and those of her elderly mum with it - it's worth a google !
Apart from that just sending you some Mumsnet strength .. you go and gave your break - am sure he would want you to and you will benefit from the breather hugely .

Thank you so much. The family are good but we must make sure we dont fall out!
Dad is hard work though. He wont listen to anyone.
It was good you could care for your dad daisy, i feel that i dont do enough really, but today he was ignoring me and i was so tired i couldnt do as much as normal. He has always wanted everything on his terms!
I feel like i am always moaning too! Its good i have back up, some people have nobody! X

i looked up the d mannose and will buy him some.
see what the weekend brings.
thanks again.x

Hi The80s. Just to say I do keep thinking of you. It sounds like you are definitely doing a lot for your Dad so please don't feel like you don't do enough. It's such a difficult situation and often there's no 'right' or 'perfect' answer as to the best thing to do, just do what works best. xx

Hi 80s (they were great, weren't they?)

Just popping in to say there is a caring for elderly parents chat thread- don't know if you've seen it?

The thread has been a great help to me, we can rant and chunter and get it all off our chests in cyberspace. (my Mum is mid-70s and quite advanced dementia now, in a care home -self-funding totally, since February.)

KitKat- you are lovely

hi kit kat, funnily enough i was on here whilst speaking to dad on the phone and he was very chatty - mostly nonsense. he seems to inhabit a very dark world when he has these infections, the man next door has raped someone and stolen his war medals and so on. He wasnt agitated though, you just have a 'normal ' conversation about what is going on in his head! its bizarre behaviour and ( my hunch) is that the anti biotics are not working and he cant seem to shift these infections.
i am going over tomorrow and i think that someone will try and get up there later - just hope he doesnt wander off again as he did on wed night this week. he has the memory clinic on wednesday and will finish the anti biotics by then. he has a busy week coming up - although he keeps saying ' why am i having all these things?' then he doesnt understand when you tell him that they want to check him over.

perfumels, thank you. yes, kit kat has been wonderful. the power of mumsnet!! i have nobody really to talk to , ( apart from family) people tend to switch off when it old people or mental health., hench my long ramblings on here.

Perfumels, how is your mum doing in a care home?
i dont think we are at that stage yet and it appears that the MRI is just showing ' old age' or something - they havent used the diagnoses of dementia, although he has the symptoms. he is very old though dad, he will be 96 in january and was doing the garden and his own shopping up until about june this year. he is a marvel and really doenst look his age to be honest ( had a very healthy lifestyle i suppose over the years, never drunk or smoked or even had a take away in his life!!)

Can the elderly become antibiotic resistant? is this why the infection he has isnt going away? The paramedic that took his blood said something on those lines yesterday.

The80s have the doctors actually sent off a sample off his urine for testing? Basically when they do testing they should be testing for what bacteria is present, and what antibiotics that bacteria is sensitive to, and that would show if the bacteria has resistance. I've posted a couple of useful links. x

www.sciencephoto.com/media/296970/view

www.netdoctor.co.uk/conditions/liver-kidney-and-urinary-system/a12003/urinary-tract-infection-uti/

thanks again. he had some results back on wednesday and the doctor my brother spoke to changed his meds over to Macrobid , so i assume that they have discovered which infection he had.
I was speaking to the social worker at the time so i didnt speak to this GP, but it wasnt dad's own one. They do not seem to be working though, but they end on wednesday morning.

The second link you sent me was very interesting!

hi, the community matron phoned my brother today and they are having a case meeting with his GP and her and other people about dad's on going care and condition. Its all happened this week!
She did mention that she wants his doctor to look at his blood results as ' something has come up on those' - trouble is my brother didnt question her about it, but i guess she couldnt say too much anyway over the phone. I am guessing that his kidney function isn't great , but after all these infections and shed loads of anti biotics i guess that they wont be working that well. She asked loads of questions about dad. Sounds promising and this week has been good for a few things getting done - even if it doesnt explain the constant UTI problem.