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!

[KitKat1985]

Okay, I'm a nurse working with adults with dementia. There's a lot going on with your post, so I might have to break this down a bit.

1. It is unusual for men to have regular water infections, but not unheard of, especially if they are very elderly as your dad is and / or has other health issues going on. I do think the doctors need to check if there is an underlying cause though. However some doctors will be reluctant to do invasive investigations in a man of his age. Can I ask if they have been sending the urine away to test which antibiotics the infection is best treated with, or are they just doing dip tests at the GP surgery? If the latter I would strongly push for the former.
   
2. I think you need to chase the community mental health team. If he does have dementia, (and it might be difficult to formally diagnose that until the UTIs are under control as that can itself cause significant confusion, as I'm sure you know), a formal diagnosis will make it easier to access appropriate support.
   
3. I'd phone your local social services team to see what additional carer support you can arrange (do be aware this may be self-funded depending on how much your dad has in savings / assets). It also depends on how open your dad is to having extra care support, and

[KitKat1985]

Sorry posted too soon. Point 3 should say it depends if your dad has capacity to make decisions about his care.

I would also add to point 1 that I would request a referral to a urologist if possible.

[The80sweregreat]

thank you for your support kit kat,
my brother has spoken to his GP and he has now suggested A and E as one of the samples is showing an infection that could cause sepsis. also because its its his 5th or 6th infection and not clearing up , the allergy to anti biotics is also a worry i suppose.
As far as the Social services are concerned , they were not that interested really as dad is self funding ( for now) and able to do some things for himself and so on.
i have chased and chased the CMHT and it is hopeless, they are stretched, unfunded and all sorts. not their fault at all, i am not knocking anyone here, but its been a long wait. have to see what happens now. The doctor has suggested hospital, i want my brothers to make this decision really.

[The80sweregreat]

wE do have POA and the careline all set up. the carer he has is good with him, but she is only there to do his dinner each day and give him his tablet.
He is a council tenant too, so no real assets to pay for anything. when he is lucid, he doesnt want to go into a care home! ( but who would>)

[KitKat1985]

Sorry to hear about him possibly having to go to hospital, although if I'm honest it may be a good thing to help get to the cause (if any) of what is causing the UTIs, as once the UTI has been treated you can get a 'proper' picture as to the extent (again, if any) of yours Dad's dementia, and what support he might need.

At home do you know exactly what it is that your dad is struggling with (I.E, getting dressed, remembering to eat / drink, or wandering). If you can detail exactly what it is your dad is struggling with it may help with getting appropriate care to meet his needs.

[The80sweregreat]

Thank you. Its going to be a long night. ! My brother isn't well himself! Its so stressful.

[KitKat1985]

Oh I'm sorry you are having such a rough time of it. I hope your dad gets on okay and make sure you and your brother get some rest too. xx

[The80sweregreat]

Thank you.

[The80sweregreat]

kitkat - we were up A and E for four hours last night - the A and E doctor he saw just said that its because dad ' isnt emptying his bladder properly' and ' it happens as you age' - he is now on a different antibiotic for four times a day.
Considering that last time he had to take 3 a day a few weeks back and ( despite having a pill box with it all marked out for him) he still managed to overdose and was ill - thats all they could do. The rash was just a reaction to the ones he was taking since monday and ' nothing to worry about'. This is only a 5 day course.
we still need to wait for his assessment and the results of the MRI , butwe cant see his own doctor until the 2nd november.

She gave us a hospital prescription, but by 9pm last night the pharmacy was shut - my brother was given a script by dads GP when he went to see him earlier yesterday, and seems it was for the same thing! So his GP sending us to A and E was a waste of time as they cant do much more and we can only assume that the ' underlying cause' is just the fact he doesnt drink enough water/ so now we have the worry of him remembering to take 4 a day ( the carer can do one for him) and him not being told by the 'voices' he hears to mess up the pill box ( as he has done before, then he took too many and lost a few) - still feel a little bit ' fobbed off' to be honest - i know that she didnt have all his records last night and its so hard as if you ask dad ' do you have bad dreams/ delusions' he will answer ' no, i;m fine' and the blood test came back okay too - no blood infection. The e coli found in one of his results ( he has a few urine samples tested at the lab and his GP had one on record ) was ' normal for someone his age' and to carry on with the anti biotics.
I think that I will have to accept that he will have a permanent water infection now/ If he has dementia, then thats a whole other thing to worry about, because he has a fair amount of help too, he isnt seen as ' at risk' i suppose. Even though the whole thing is making us poorly and the constant worry , even guilt, is making us feel on edge. we are going away for a few days half term ( UK) and i already feel bad in case something happens while we are away!

[KitKat1985]

Hi. Sorry A&E wasn't a great help. I'm guessing it's nitrofurantoin they've prescribed if it's 4 times a day. Given that he clearly can't manage his own medication if he's accidentally overdoing on them, I think it's really poor they've sent him home with minimal support. Is there any possibility of contacting the care agency that supplies his current carer to see if they could supply extra calls just for a few days whilst his infection is treated and to manage his tablets?

I would speak to his GP once his finishes this course about continuing at what is known as a prophylactic dose (basically taking a lower dose of the antibiotic as a regular medication to try to prevent future UTIs developing). It's obviously not ideal to take an antibiotic on a long-term basis, but since your Dad is getting regular UTIs that are causing him significant issues I'd say personally that it would be a good idea in his case. xx

[The80sweregreat]

He was on one tablet a day for a few weeks, but he had those replaced on monday for the infection, but then he had an allergy come up , so they were stopped. He is now on the nitrofurantoin four times a day as prescribed by his GP yesterday and might go back to one a day after they have finished next week.
he is already self funding for half an hour a day and that is nearly 100 a week ( 7 days) not sure if he could find the extra for another half an hour, the Social services are aware of his situation, but they dont consider him ' at risk' and would have to do a financial assessment for any further help. they are not very helpful when i have called them in the past, not rude, but not that bothered either really. they promised to ' look into it' but didn't a few weeks ago.
The doctor at A and E just seemed to assume he could go the seven miles back this morning to pick up her prescription.
He was okay this morning, but he telephoned me today saying he was ' in peril ' and the man next door ( who he thinks he knows) is trying to take over his home and is tying up his wife and putting her in his car.
he is trying to find out his key safe number, but nobody will give it to him. my middle brother was there this morning and said he wasnt too bad, within a few hours he is manic again. I am at a loss now. thank you for your replies kit kat, nobody understands and i also have a miserable husband who seems to think none of us ' are doing enough' when we are!! its another infection , i know the 'signs' but rather than deal with it last night at hospital, they just let him go. the doctor was so young, only looked about 24, what does she know about old folk? (not her fault at all, but the system is skewed) i feel like crying.

[KitKat1985]

How are things now The80sweregreat? Are the antibiotics kicking in a bit now do you think?

[The80sweregreat]

Hi, not sure really, didnt see him yesterday, but i spoke to him on the phone and he was still being all weird and having delusions and bad dreams, which i know is the sign that the infection isnt clearing up totally. my brother saw him saturday and said he wasn t too bad, but after he left him he was ringing us up going on about next door again.
He is taking the tablets , but not eating much. I asked him if he watched strictly as he likes that show, but he said no. i am going up there today - four a day is a lot of anti biotics so i hope they are helping and after a nights sleep he is sometimes better. thank you for asking though, we all feel a bit at our wits end with it all and these water infections are really bad - i wish it would clear up, but it doesnt seem to be.

[KitKat1985]

Hi The80s. Did you get a chance to see your Dad yet? I do feel for you. My own Dad had early onset-dementia (hit in his mid-60's) and he passed away earlier on this year (but from cancer, not dementia) so I have some understanding of how distressing this must be for you.

[The80sweregreat]

Hi kitkat, i am sorry to hear about your dad - thank you for your kind words and flowers - you must know more than most how awful this disease is - you said that you are a dementia nurse too, so you see how it affects people every day. That must be tough sometimes.
mid 60s is so young too - it must have been hard for you all.
I saw him today and he wasnt too bad thank you - still on four tablets a day and will be until saturday, then back to one a day i guess. He is okay when someone is there saying ' do this, drink this, eat that, change your top, go to the loo' and so on, but on his own it all goes a bit wrong. he can walk about and he can do things, but its an effort for him - he does get up and have some breakfast and makes his own tea, so he isnt that bad - yet - but you can tell that he would rather not have to do it and his short term memory is very bad, has to be reminded to do everything. I wonder if the MRI will give us a diagnoses if it is dementia? the CHMT still havent done their assessment, but i have a feeling they will catch him on a 'good day' and he will pass the tests alright. he is that up and down - if the water infections stay away he is a bit more stable.
Do you see this a lot with your patients, or are they a lot worse? at least dad can get up and down stairs on his own and walk around a bit ( not as much as he used to ) and make a cup of tea. anyway, thank you for replying - i do not speak to anyone much apart from family - once you mention mental health or elderly people, others seem to switch off! ( i am only early 50s , so a lot of my friends have parents much younger and dont understand!) thanks again. take care

[KitKat1985]

Hi The80s. Thank you for your kind words about my Dad. His death was very difficult (and I don't think I'll ever quite get over it) especially as on his better days he remembered that he was dying from cancer and didn't have much longer with us, which was particularly hard as he was very distressed about not getting to see my DDs grow up (DD2 was only 5 months old when he died). On his worse memory days though he forgot he was dying and would talk about taking my girls out when they were older, which was nicer in the sense that it was obviously less distressing form him to believe this would happen, but obviously very hard for me (and my Mum) who knew that it never would.

But, yes it is quite common for people to have good days and bad days. I think a lot of people find that physical things like urine and chest infections, colds, etc tend to make people have worse days.

Do you think the carer who comes in could leave a large glass of water (and maybe a sandwich or something) next to a chair where your Dad sits a lot? We have quite a few patients who wouldn't think to get a drink / something to eat on their own, but will happily drink / eat if they happen to be sat somewhere where there is food / drink already there if you see what I mean?

To be honest though I think you've been treated poorly. In my humble opinion if your Dad has previously accidentally overdosed on medication then I would say he is clearly at risk and should have been treated in hospital as he clearly isn't able to manage his 4 tablets a day routine right now whilst his UTI is active. I also think social services should be increasing his calls to 3 times a day really in the long-term if he's forgetting to eat / drink so that at least you know that he's being given 3 meals a day and that he's being checked on regularly. Sadly it's such a nightmare to try and get funding for anything these days, and most of my colleagues in social services are under immense pressure to cut costs and provide minimal care services. It's really sad.

[The80sweregreat]

I know kit kat, i am not having a go at anyone - i know that everything is stretched and they are doing their best. The lady who did the telephone assessment with me last month said that he was at risk, but SS just seemed to think there wasnt much they could do for now as he is having some help and we are around. I think that he is a council tenant might also work against him ( he pays full rent) but not sure really. They didnt get back to me.
My older brother is there today and he said he is going on about being in peril again - he will do him some food for his tea and his catheter too. he is so good with him, but he has to fit dad in with his own job and some days he is on his own. we ring him up to remind him to take the tablet - he took one this morning when i called him, but he wasnt too bad then and kept saying ' why do you ring me up all the time?' and was crying. He has been like this before , he knows that he isnt well. I just feel so bad that there isnt much more i can do. I am so grateful for you replying and understanding - its just a complex condition and everyone is different i suppose. Heartbreaking for you with your dad having cancer as well though - that is doubly hard.
My mum died of Parkinsons/ dementia and infection she caught from the hospital - 7 years ago and that was also horrible, so i can sympathise, but she didnt want to live anymore and had battled that for 5 years. She was 85 and always said how lucky she was to live that long, but she wanted to die.

We put water in a carafe next to dad and his lunchtime carer replaces it ( or one of us) but he can do a bit of tea for himself, mostly just bread and cheese or jam and a cake. he doesnt eat a lot really and has lost weight, he used to like the wiltshire food, but he has gone off them lately and blames the tablets!
thanks again, not sure what will be the outcome. the hospital just sent him home last friday and his own GP is hard to track down as he has two surgeries and only works at dad's one one or two days a week. we should get the MRI results on the 2nd november.
thanks again. you take care too, grieving doesnt stop overnight - i still miss my mum and its been years. x

[The80sweregreat]

Does all these 'symptoms' ( leaving aside the constant water infections he has had this year) sound like Dementia ( of some sort?) he can be so 'normal' on occasions, face to face or on the phone.
Is this normal for this disease?
I have done so much reading and googling about this and still at a loss at times.

[KitKat1985]

It's hard to say without doing some sort of formal assessment, but if he's short-term memory is very poor and he has to be reminded to do everything, then yes I would say that sounds like dementia. It is normal to some extent to get some age related memory loss as people get older though, and depression is also quite common in the elderly so that can cause similar issues sometimes, so it comes down to extent of his short term memory issues as much as anything else. Do you find yourself having to repeat things to him a lot? And do you think he knows things like the date, and who the current prime minister is etc? Usually with dementia the latter sort of things are the sorts of information people struggle to remember in the mild / moderate stages. xx

[The80sweregreat]

Yes, he knows his date of birth , prime minister etc, the answers are erractic when he hasca bad infection though



We do have to repeat things a lot and his memory is terrible. He needs a hearing aid, but wont get one. Doesnt help as we have to shout.

[KitKat1985]

Yeah the hearing issue probably isn't helping to be fair.

This is a link to a test called the Mini-mental state examination. It's quite commonly used as a quick assessment for dementia. It might give you some ideas on the sort of things your Dad would be likely to be asked in an assessment:

www.bing.com/images/search?view=detailV2&ccid=VDn%2bH2Hp&id=8062333DC842B90BBE83C3BFE50A2510440C6551&thid=OIP.VDn-H2Hpxr3emOjGg11PxgEVEs&q=The+MMSE&simid=607989116904408937&selectedIndex=5&ajaxhist=0

[The80sweregreat]

Thank you. X

[The80sweregreat]

Hi, he had one of these done in the summer - we called the CTT and a nurse was there for about hour and half doing tests and things - she said that he scored quite low - but he did have the tail end of a water infection ( was on anti biotics too). Makes me wonder if this is why they are not rushing back to do another test with him. She admitted that if people are prone to UTI's, this is then blamed for everything!
my other brother is going over today - i am going over thursday or friday. we are lucky that we can take it in turns, but he is still alone an awful lot of the time.

[The80sweregreat]

Hi, had a call today but apparently my dad went out last night at 7.30 pm to knock next door! he does the lady, but he thinks that his old school friend from the 1930s lives there - sounds as if he has done this before too, but they didnt tell us.
my brothers are with him and we are waiting on the CTT team to see if they can do anything for dad, they did come out int he summer to him, but they only did that test and some blood tests and that was that.
i really think he is at risk now if he is wandering around especailly late at night. feel so helpless. will go up there later on after i have finished my job i think.

[KitKat1985]

Oh how stressful. I agree to be honest that he's at risk if he's going out wandering in the evening, especially as the weather is getting colder. Did you have any luck hearing back from the CTT team? I do think your Dad should be receiving more care than they are providing. xx