Another Infection and Incontinence

[sue38]

As some of you may know my Dad (83) is in the mid stages and still living at home with my Mum.

Last Thursday she had difficulty waking him and fearing he was having another stroke called the GP. The GP was unhappy with his condition and arranged for him to be taken to the local hospital by ambulance.

It seemed there were 2 possibilities; either a TIA or an infection, most likely a UTI. My Dad also has a patch on his leg which has been itchy for some time and on which he had had a biopsy earlier in the week. This wound was looking a bit inflamed and we brought it to the attention of the doctors.

He was admitted to a medical ward and prescribed antibiotics. They were unable to get a urine sample until Friday afternoon. He was very sleepy most of Friday but by Saturday had perked up and on Sunday there seemed to be very little wrong with him physically. In fact we thought he was less confused.

Of course it being a weekend, and a Bank Holiday weekend at that, there were no tests results and we were told he couldn’t be discharged until they had the results of the tests and he had finished the antibiotics.

On Tuesday we fully expected him to be discharged. The result of the tests showed no UTI so the sister said it rather looked as though the biopsy wound had been the cause. The antibiotics were stopped on Tuesday but we were told that the doctor was refusing to discharge him until he had the result of the biopsy.

In retrospect we should have kicked up a fuss. Yesterday, Wednesday, he wasn’t quite as well and last night the nurse enquired at the end of visiting if he was incontinent at home. NO! Because he is now. This afternoon he slept all through visiting and we were told that they think he has a UTI.

My mum asked for a meeting with the doctor whom we have never seen in the whole time since he was admitted and was told ‘No point until we have the result of the urine test which we can’t do as he’s incontinent now’.

We are mad.

I have written a letter of complaint to the Doctor, faxed a copy to Patient Relations (aka PALS) and am sending a copy to the GP. This could have been avoided.

My main concerns are when was the incontinence noticed and what have they done about it? Does anyone know if they have incontinence nurses in hospitals or just in the community? Have they been washing my Dad on a regular basis? If he is incontinent and not being washed it’s no wonder he’s developed a UTI.

I prepared this post earlier before evening visiting. I’m pleased to say my Dad was much more alert and coherent (although in incontinence pads still).

We saw no signs of an infection (temperature normal, no more confusion than usual) other than him being in pads. My mum took him off to the toilet to try and get him to give a sample and the nurse tried to help. No luck. The nurse said he’ll just have to tell us when he needs to go.

Any ideas on how to get a sample from someone in pads? I can’t believe this is the same man I took to the Rugby 2 weeks ago and he took himself off to the toilet at half time.

Sorry for the rant

 

[Skye]

Oh dear Sue, this sounds so like what happened to John, apart from the fact that your dad may not have an infection.

John was mainly continent, with the odd accident, during the day before he went to hospital, though incontinent at night. It appears that most people with dementia come out of hospital incontinent, simply because the nurses don't toilet them, and they are confused because they are in a strange place.

There are always problems getting a sample from John. One way is to try to 'catch' one, but there's usually little chance of that. The best way is to use an external (condom) catheter, just long enough to get the sample. That sometimes doesn't work either, because John won't keep them on, unless he's too ill to be aware of it.

The third way is to test from the pad, using a kit they use to test babies' nappies. They may say they can't do that because there could be external contamination, but in fact research has shown that testing this way is quite efficient.

Sorry you're going to have to go through this. Hopefully, your dad will not have an infection, and will be home soon.

But it's a worrying time.

Love,

 

[jenniferpa]

Hi Sue

I know Hazel went through this with John, so she's probably got some ideas. I vaguely remember reading that squeezing the urine from a pad gives no more false positives than any other way - after all this is more or less what they do for babies. Alternatively, what about the sheath option?

 

[sue38]

Thanks Jennifer and Hazel for the info about getting a sample from the pads. I knew there was some other way of getting a test done.

I looked at the AS factsheet about dealing with incontinence, and all the things on there about confusion at to where the toilet is (it's not even clear to me whether it's Ladies or Gents, engaged or occupied) and taking regularly to the toilet, have been ignored.

I am printing off the fact sheet and will suggest they pin it up on the noticeboard

I have demanded, yes demanded, a written response to our concerns or a conference with the doctor in charge by 5 p.m. tomorrow and faxed a copy to Patient Relations.

I'm not holding my breath...

 

[Amy]

Oh Sue....I can understand you being so annoyed. Hazel you are a fount of knowledge. When mum was at home, dad was able to keep her pads dry most days by toileting her hourly. Maybe when you get dad home again, he can be encouraged to use the loo before and after meals (I know with youngsters after meals is the natural time for them to need loo) and he will get back into the habit. Dont despair Sue, it is possible that the unknown surroundings of the hospital have added to his confusion, and when you get him home, hopefully normal functioning will return.
Love Helen

 

[rhallacroz]

HI Sue
You are doing all the right things it is awful I know. You can test urine on a pad. My advice would be to get dad home asap with a care package if necessary. So what if the biopsy result isnt back yet it aint going to make any difference to the dementia journey I am sure.
Your dad needs to be back home and in familiar surroundings to get back on an even keel. Feel free to PM me I think we live pretty near and are making similar journeys although sadly I am a little further down the line.
Kind wishes
Angela x

 

[Skye]

Oh Sue....I can understand you being so annoyed. Hazel you are a fount of knowledge.

Thank you Helen, but not so. I just have vast experience of the problems of the masculine bladder!

When mum was at home, dad was able to keep her pads dry most days by toileting her hourly. Maybe when you get dad home again, he can be encouraged to use the loo before and after meals

Worth a try, but that didn't work with John. If he didn't feel the urge, he didn't know what he was supposed to do! And he would get quite cross if I tried to toilet him when the urge wasn't there!

I think Angela's right, get your dad home as soon as possible, unless the biopsy throws up something that needs immediate attention. He can get over the incontinence, but the longer it's established, the harder it's going to be.

 

[sue38]

Thank you everyone for your concern. I printed the thread off and showed it to my Mum and it convinced her that we should push for him to be discharged.

I had a call from the doctor this afternoon who had been handed the letter by the sister and my Mum and I went straight up for a meeting with the doctor and the sister.

The outcome was that they agreed my Dad should be discharged, he does not have an infection is not incontinent, just didn't quite make the loo on a couple of occasions. A big difference!

So we have brought him home. and he is sat watching the rugby on the TV

Thanks again for your help.

 

[Amy]

BRILLIANT!!!
Love Helen

 

[Skye]

Excellent news, Sue.

Just proves that we have to be on the ball at all times.

I just wonder why your dad was wearing pads? Almost guaranteed to produce incontinence, they're so difficult to manage, particularly for a man.

I'm glad there is no infection, and I hope your dad settles down well now he's home.

Love,

 

[Margarita]

It seemed there were 2 possibilities; either a TIA or an infection, most likely a UTI. My Dad also has a patch on his leg which has been itchy for some time and on which he had had a biopsy earlier in the week. This wound was looking a bit inflamed and we brought it to the attention of the doctors.

That what they always say to me , its a TIA or an infection .

always turn out to be a TIA, for my mother

The only way I can get mum to do a urine test is to get a plastic bowl between her legs do into that, but at the beginning she would not let me to that for her, because in her mind you only get urine infection if you've been sleeping around, so had to convince her other wise .

May be your father just to embarrassed to do one for the nurse , so hopeful he trust your mother & she can get one of him do it in a bottle or bowl

You may find that your father is incontinent now , because he was confused in his environment to know where the toilet was.

My mother for ever having urine test now , that she just does it for me even though she wears pads But I have to tell her its on the doctors orders other wise she think I like doing them , because I like annoy her



so may be when he back home in his own environment he may try to still go to the toilet, even when he has a pad on .
As that what happen when mum go to respite, they don't have the time to keep escorting them to the toilet , its wrong I know but its a reality of the NHS

The more he keep urinating into the pad the more he gets use to doing it like that , that he forget how to use the toilet, as that what happen a lot to people that are in care home or in hospital for a long time ( dementa nurse told me that , also OT)

so when he gets home prompt him to use the toilet , other wise he be doing a number 2 in the pads sooner rather then later

 

[citybythesea]

I am so sorry for what you and your family are going thru. Mom is in the last stages and has had problems. I found that her AD always got in the way of treating her in a "normal" manner.

Several months back mom had a series of strokes which left her with a neurogenic bladder (Her brain ceased to give her bladder instructions) It took about 3 days of what seemed like just a bad bladder infection to get escalated to the point that she had to go to the hospital. (The nurse was positive she would not make it out...bp 110/60 and 100 temp along with a pulse of 25) At the hospital she was catheterized and I will say if my bladder were that full I would have not wanted anything to drink either. Before that tho' I had always kept o diary of her day. Sort of like what a nursing home should do. I would record her every drink, meal (down to caloric intake) anything odd. (Blood in urine times I changed her pad, bowel problems...excess, nonexcess) it got to be so bad that my family was calling me obsessive compulsive.

Anyways in the hospital she did not thrive and actually went down hill a little, once I got her home she started to thrive again and eat, drink....talking was still and is still sporadic. I have since had to take her one more time to the hospital for tests. Her dr.s and nurses have found it extremely useful to have the diary as it gives them a little more insight. When she came home from her tests she came home with hospice. Her bladder had created a bleed and there was nothing to do for her except comfort. The hospice nurses have said I can let go of the diary now....I still do it as it gives me new insight and a way to deal with her problems also.

I hope once you get him home you will see that he will thrive in his own way.

HUGS

Nancy

 

[sue38]

Thank you (again!) for all your support and advice.

My Dad is much happier at home, although today we had to watch Wigan lose to Leeds in the rugby league Challenge Cup.

I can't help feeling satisfied that we took on the NHS, made them take notice, and proved that we knew best.

A friend suggested (tongue firmly in cheek) that today I sort out the problems in the education system, take tomorrow off and then on Monday tackle the problems in the Middle East. But I think a certain Mr. Blair has taken on that role.

For all we learn on TP (for which I am truly grateful) there are some things we can only really learn from experience.

 

[jenniferpa]

I've been following your saga with interest. I have (sort of jokingly) suggested in the past that if you want to get someone discharged the best way to do it is start making requests for a formal meeting with the consultant. Each time my mother was in hospital it was "need to get the results of the tests" "need to see this person" and so and so forth and the stay would stretch into weeks, and then I would make a formal appointment and each and every time the very next day I would get a call and be told she could go home. I don't think it was such a coincidence now - I think people slip through the cracks and no one really follows up until someone with power reviews the case and that doesn't seem to happen until they are put in the position of having to defend their decisions to a family member. Of course it's possible that the review doesn't actually take place and they simply take the line of least resistance - sort of trouble maker alert. I can't help feeling the NHS wouldn't be in such a dire financial position if they followed through with things - my mother was held on a ward for over a week while they waited for a visit from psych services - I did what I described above, got her home the next day and that very day got a call from psych who indicated they had received the referral that morning! Despite me asking every darn day, no one took it upon themselves to check that the referral have been done.

 

[sue38]

Jennifer,

I couldn't agree more. If the NHS were a private business they would be out of business in a week. My dad has been blocking a bed for the best part of a week. To whose advantage? Certainly not my Dad's.

The wheels move so slowly. The whole system is reactive rather than proactive (and I hate that word!). You really have to make a nuisance of yourself before you see any action. The nurses are caring, but are relatively powerless when it comes to making executive decisions.

Fortunately for us as a family we are pushy, have access to word processors, internet, fax and of course TP. What about people who don't have such privileges? There is still an attitude amongst some of the older generation that you don't rock the boat, that you don't question the professionals, and I include my Mum, a professional for over 50 years and a pioneer for women in her day, in that group.

My dad was in serious danger of falling down one of those cracks you describe. Through knowledge and veiled threats - it never hurts to say please ring me at so-and-so solicitors - we got him back.

Stepping off my soap box... for the time being!

 

[Grannie G]

Well done Sue.

 

[LizzieS]

Well done!

Can I just add that I fail to understand why the hospital labs do not function fully for 7 days a week - sickness does conveniently happen between Monday and Friday

 

[Tender Face]

A friend suggested (tongue firmly in cheek) that today I sort out the problems in the education system, take tomorrow off and then on Monday tackle the problems in the Middle East.

Go for it, Sue!

I sympathise in one respect in the battle to get medics to take concerns seriously ..... (I might be asking you to help me with a case against mum's GP at some point! ) ....... but once again we come back to the post-code lottery - and I find it 'interesting' (not quite the right word I know) that your dad's experience on a medical ward is so different to my own mum's on - well I suppose it is almost a palliative care ward .... (are we allowed to say 'geriatric'?) just a few miles up the road ..... the standard of care is beyond any superlative I can find ....

BUT - I do agree so much with Lizzie and other comments here ...... the waiting for results is appalling - and God forbid a Bank Holiday falls between scheduled tests or reports ... I find it bizarre hospitals can appeal for millions to fund scanners - only to see them lie idle over a weekend for the sake of paying staff to work ... as you say, how much more is it costing to fund a patient using a bed unecessarily ....?

On that point, off my own soapbox ... so glad dad is home - sorry the rugger didn't provide the right result today

But well done you!

Love, Karen, x

 

[sue38]

On the pont of tests results, they took a urine sample from my Dad on the Friday afternoon and we didn't get the result back until Tuesday after the Bank Holiday.

The following Friday during the meeting with the sister and the doctor we were told that they had been unable to take another urine sample, but the indications were that my Dad didn't have a urine infection (no smell, no temperature).

We came out of the meeting which had lasted about 15 minutes and the other sister came to me and said 'Good news, your Dad doesn't have a urine infection'. 'I know' I replied 'the other sister just told me that'. 'Oh no, just after you went into the meeting your Dad went to the loo and I got the sample, we've tested it and it's negative'.

How on earth can one test take 4 days, and another 15 minutes? I was so gobsmacked and so anxious to get him out of there I didn't stop to ask.

Karen, don't get me wrong, the nurses are not uncaring, it's just that they are not dementia trained, and there is no one really with their eye on the ball.

Some years ago my Dad had a brain haemorrhage and was admitted to a special neurological hospital in Liverpool. The care there was absolutely superb, and we were kept informed all the time and most importantly our opinions were respected and taken into account when deciding on my Dad's treatment.

It does seem (IMHO) that at the critical end of things the NHS works efficiently, but on the more general wards there is an awful lot of money being wasted.

 

[Skye]

How on earth can one test take 4 days, and another 15 minutes?

I think the answer to that is that the nurse would use a dipstick, which changes colour if there is an infection, but doesn't show what the infection is.

If the stick does change colour, they send a sample to the lab for culture, so that they can get the right antibiotic.

I agree with you on the lack of dementia training for nurses on general wards -- doctors too, I'm afraid.

Get stuck in there, too, Sue. There's a vast desert of ignorance out there, and if we don't do something about it, who will?