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UTIs, seizures and hospital

canary

Registered User
Feb 25, 2014
12,216
South coast
Hi @TNJJ and @Starbright , yes I had a little plastic stand and I put it onto a tray in case of leaks, but that wasnt where the problem was. I put the tube from the night bag into the tube at the bottom of the day bag and I did work out about the little lever that had to be pushed down so that the urine would go into the night bag. Unfortunately, each night, the tube from the night bag got wrapped around OHs torso (presumably where he turned over in his sleep) and yanked the tube out of the bottom of the day bag, so all the urine came out the bottom of the day bag into the bed.
I wondered whether you could get different connections, like one that clipped into place or screwed shut, but apparently that is all you can get
 

charlie10

Registered User
Dec 20, 2018
397
So sorry to read this @canary.......you've had a tough time of it lately and this sounds like the proverbial straw and camel. I'm so glad you've had support from your children and the GP.....you're always so helpful on the forum, you deserve to let others take a little of the weight from you. Take care, x
 

AliceA

Registered User
May 27, 2016
2,812
Just caught up with this, I am so sorry Canary, how difficult it has been for you and I hope you get the ongoing support you need.
How on Earth we are just expected to know just beats me.
Most things I have discovered have come by chance, so although it seems I am locking the door after the horse has bolted there are a few things I have found out.
There are non rustle waterproof covers for pillows and duvets as well as mattresses.
One carer told me about puppy pads, a pack of 100 costs a few pence each they have a plastic back and gel crystals that soak up liquid.
I use Dettol Laundry rinse, this seems to cope with smells. I use it in the final rinse. I also find if stored items smell musty, just a rinse freshens stuff up.

We cannot do everything alone we need help, I hope your family involvement continues, sometimes we just need it. We need mothering too.
I hope the respite works out well, it may help with the future too.
Above all a BIG THANKYOU, you have been there for so many of us, we are there for you too.

Love and hugs, Alice xxx
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,377
Nottinghamshire
This may be a crazy idea and I can't remember exactly how my mum's night Cather set up worked or how often you have to unfasten the tubes - but would those tiny zip-ties work as an additional security clip?

Might be uncomfortable on a leg bag unless you can cover it though..
 

canary

Registered User
Feb 25, 2014
12,216
South coast
Yes, @charlie10 it was indeed the proverbial straw.

There are some good idea here - thank you.
Someone told me about Zoflora (a disinfectant) which I put in the main wash and paused the washing cycle for half an hour for it to soak, and then continue the wash cycle. It worked well and so I saved the duvet cover, pillowcases and bottom sheet - which I was glad about as I had only bought them a couple of months previously. I should imagine that Dettol laundry rinse works just as well @AliceA . Where did you get the rustleproof duvet and pillow protectors from?
Ive used the puppy training pads when OH was missing the toilet before he had to be catheterised, but I never thought of using them in bed. Does anyone know if they are better/worse than kylie sheets (and where do I get kylie sheets from?)
@Bunpoots - Im assuming that you are thinking of using the zip-ties to keep the day bag on his leg? The problem was with the plug-in connector between the day bag (attached to his leg) and the night back. Someone suggested I used gaffer tape to wind round the connection to keep it together. Im not sure whether he was joking or not o_O

Hes not had any problems while he has been in the nursing home and Im assuming that they use the same system. I must find out what they do there.

Im not going to get ongoing support from the children. They are good in a crisis, but live quite a way away and have their own problems, so I cant rely on anything from them on a regular basis.
 

TNJJ

Registered User
May 7, 2019
1,399
cornwall
Yes, @charlie10 it was indeed the proverbial straw.

There are some good idea here - thank you.
Someone told me about Zoflora (a disinfectant) which I put in the main wash and paused the washing cycle for half an hour for it to soak, and then continue the wash cycle. It worked well and so I saved the duvet cover, pillowcases and bottom sheet - which I was glad about as I had only bought them a couple of months previously. I should imagine that Dettol laundry rinse works just as well @AliceA . Where did you get the rustleproof duvet and pillow protectors from?
Ive used the puppy training pads when OH was missing the toilet before he had to be catheterised, but I never thought of using them in bed. Does anyone know if they are better/worse than kylie sheets (and where do I get kylie sheets from?)
@Bunpoots - Im assuming that you are thinking of using the zip-ties to keep the day bag on his leg? The problem was with the plug-in connector between the day bag (attached to his leg) and the night back. Someone suggested I used gaffer tape to wind round the connection to keep it together. Im not sure whether he was joking or not o_O

Hes not had any problems while he has been in the nursing home and Im assuming that they use the same system. I must find out what they do there.

Im not going to get ongoing support from the children. They are good in a crisis, but live quite a way away and have their own problems, so I cant rely on anything from them on a regular basis.
Does your OH have a hospital bed with sides that go up and down.? When in Nursing Homes they always have the sides up to loop the catheter tube through.That way in cannot entangle around PWD. They also take the straps off at night and just use the Statlock clip to keep it in place.

Kylies are better and can be found on EBAY.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,377
Nottinghamshire
No I was wondering if you could use the tiny zips ties to keep the connector from coming apart, like a clip around the tube? But I can’t picture it to work out if it would work. I remember my mums coming adrift at times from the connection at the night bag :confused:...
 

jugglingmum

Registered User
Jan 5, 2014
5,745
Chester
Sorry I'm so late in catching up on your post, had time to read yesterday but not post.

I hope that OH stays in respite long enough for you to recover.

I am glad your children came down and helped, but still having dependent children, can understand how they have their own lives with under 5s being a very intense stage of life.

I'm so glad it was the day your cleaner was due and she turned up.

I know the devastating feeling of washing urine soaked bedding and realising it still smells (in my case together with other items in the machine as well). My son carried on having night time accidents until he was about 10, but around the ages of 7 to 8 we could have 4 or 5 in a row (then none for a couple of weeks or more) Luckily the duvet was never too bad, so I got it through machine (single so fitted in) and in airing cupboard (we don't have a dryer) before leaving for childminder drop off and work. I rinsed all the sheets/duvet cover in the bath first as otherwise I found the smell didn't come out and had them in the machine before I left. I was younger then, but remember the endless bed changing morning and evening (after a full day at work) was exhausting, not sure I'd manage it now around working hours, although only 7 years older.

The suggestions of zoflora or dettol sound better options than the prerinsing I was doing.

Just a question. You comment in your first post yesterday about care home not being permanent as you won't be self funding and then later you comment about wanting OH to come home. Just asking as to are you saying what you want, or what you think will happen due to funding issues? Or because he is OK in the respite home where he has a team to look after him, which often brings improvements. Hope you understand what I am saying, as you need to look after yourself, and these decisions should be about everyone involved, not just the PWD (undiagnosed as he is - you know my opinion).

Sending massive (((((((((((((((hugs))))))))))))))))
 

Sirena

Registered User
Feb 27, 2018
2,209
I'm so sorry to hear how difficult things are, Canary. I can understand why it was difficult to talk about. Thank goodness for your cleaning lady, and I am glad your children stepped in to help in the short term. Like Jugglingmum, I wondered if you thought it would be best for your OH to come home, or if you just think it is inevitable. As others have said, please look after yourself.
x
 

AliceA

Registered User
May 27, 2016
2,812
I have had the mattress cover, duvet cover and pillow a few years. I did a search so cannot remember where I got these. I use the Care company, and other online shops. I checked reviews. Sorry not to be more help.
The Dettol rinse does cut odour, says it kills 99% bacteria. I have used Zoroflora, disinfectants Inc. own make what I am use now seems better. It comes in 1 1/2 litre. From £3 to £4.50. So probably is more economical.
For dirty washing I have put some in main wash. I capful per load is enough.
I feared the duvet cover may make it heavy, it doesn't seem too. The duvet in pure down bought 30-40 years ago after visiting Swedish friends. We followed the European custom of two singles even on a large double bed. Now we have two.
I have washed the duvet over the years, but they take a while to dry. With artificial you may need a lower tog. Although I think my husband finds the weight a comfort. Trial and error really.
For the general cleaning I use white vinegar in water, the smell does off quickly but that freshens up the place.
I vary the proportions so less for glass.
We have cotton bedding from the Swedish furniture chain. Well washed it does not need ironing.
Carer has come early, so off to bed. Try to sleep when I can! X
 

canary

Registered User
Feb 25, 2014
12,216
South coast
I went to see OH again today and the carers were saying what a lovely man he is - so polite and kind.
Mmmm - Im wondering how long host mode works..........

Just a question. You comment in your first post yesterday about care home not being permanent as you won't be self funding and then later you comment about wanting OH to come home. Just asking as to are you saying what you want, or what you think will happen due to funding issues?
Probably both. I would prefer to continue looking after him and I honestly dont think that SS would recommend a care home at this stage either. OH has also started asking when he can come home and Im sure that he has capacity.. He does understand that I am ill and need to get better, but it wont wash long-term. So I want to get the night time catheterisation sorted. I also want carers in the morning to get him showered and a place in the day centre that he refused last year. I do need to be stronger before he comes back, though. He is booked in for a month (already paid for) and I need to decide by the end of this week whether to extend this. Im thinking about maybe another couple of weeks which will take us into the new year and it might be easier to get support in place then.
Does your OH have a hospital bed with sides that go up and down.?
No its just an ordinary bed. He is in an ordinary bed at the care home too.
They also take the straps off at night and just use the Statlock clip to keep it in place.
Im afraid I dont understand this at all. Do you mean the straps that hold the leg bag in place? And whats a Statlock clip?
No I was wondering if you could use the tiny zips ties to keep the connector from coming apart, like a clip around the tube? But I can’t picture it to work out if it would work.
I cant picture it either.Im afraid.

Im a complete novice where it comes to this damn catheter. I really have no idea at all, so Im going to be there when OH goes to bed one evening and ask the carers to show me exactly what they do.
 

Starbright

Registered User
Apr 8, 2018
514
Hi @canary ...I bought a complete cover for Oh mattress from House of Emily.....it zips in and is not noisy at all ...it was put to the test a few months ago when my oh had a catheter but also had retention and I had to call in the DN when she removed the catheter he was bleeding and so she had to put the catheter back into him ...long story but he ended up back in hospital. Anyway the mattress cover was brilliant. Hope this helps.
A x
 

TNJJ

Registered User
May 7, 2019
1,399
cornwall
I went to see OH again today and the carers were saying what a lovely man he is - so polite and kind.
Mmmm - Im wondering how long host mode works..........


Probably both. I would prefer to continue looking after him and I honestly dont think that SS would recommend a care home at this stage either. OH has also started asking when he can come home and Im sure that he has capacity.. He does understand that I am ill and need to get better, but it wont wash long-term. So I want to get the night time catheterisation sorted. I also want carers in the morning to get him showered and a place in the day centre that he refused last year. I do need to be stronger before he comes back, though. He is booked in for a month (already paid for) and I need to decide by the end of this week whether to extend this. Im thinking about maybe another couple of weeks which will take us into the new year and it might be easier to get support in place then.

No its just an ordinary bed. He is in an ordinary bed at the care home too.

Im afraid I dont understand this at all. Do you mean the straps that hold the leg bag in place? And whats a Statlock clip?

I cant picture it either.Im afraid.

Im a complete novice where it comes to this damn catheter. I really have no idea at all, so Im going to be there when OH goes to bed one evening and ask the carers to show me exactly what they do.
Yes the straps that hold it together come off at night.

A Statlock is like a sticking plaster that sticks to the leg.It is white and has clips on . The leg beg at the top where the tube is gets clipped to that . It holds the tube in place more securely than a strap.

Just for info when changing your day bag every 7 days always put it on the opposite leg it was on.
Reduces the risk of pressure sores.I wasn’t sure if you knew that.
 

AliceA

Registered User
May 27, 2016
2,812
when my husband last came out of hospital he had deterioted, we had post hospital Carers now we have Carers three times a day. I also arranged for a continence assessment. I was offerered a pressure mattress or a topper. I chose the topper. This is a great success. It looks like a lilo but acts differently.
My daughter suggested asking for a hospital bed bu I think my husband would climb out, she only suggest it because he fell in the night. I have seen this when I was in hospital myself. scary to watch! I rang my bell for help!
I would think about contacting the Continence Nurse in the County for advice. Our county one was very helpful.
It was a district nurse who came to assess but the Continence Nurse had very wide knowledge.
Take long enough, use the full month, blame the doctors if you have to. Agree you want him home but you must convince the medical you are fit enough.

Take great care. As you said family steps up in a crisis but we have to look after ourselves the rest of the time. I do not think many really understand the stresses of actually living with this illness. X
 

Quizbunny

Registered User
Nov 20, 2011
109
Hi @canary ...I bought a complete cover for Oh
when my husband last came out of hospital he had deterioted, we had post hospital Carers now we have Carers three times a day. I also arranged for a continence assessment. I was offerered a pressure mattress or a topper. I chose the topper. This is a great success. It looks like a lilo but acts differently.
My daughter suggested asking for a hospital bed bu I think my husband would climb out, she only suggest it because he fell in the night. I have seen this when I was in hospital myself. scary to watch! I rang my bell for help!
I would think about contacting the Continence Nurse in the County for advice. Our county one was very helpful.
It was a district nurse who came to assess but the Continence Nurse had very wide knowledge.
Take long enough, use the full month, blame the doctors if you have to. Agree you want him home but you must convince the medical you are fit enough.

Take great care. As you said family steps up in a crisis but we have to look after ourselves the rest of the time. I do not think many really understand the stresses of actually living with this illness. X
In the community Profiling beds are usually provided. My mum has one of these and it’s great. The height of the bed can be adjusted and as mum is still mobile she has it at the lowest setting and can easily get in and out. The upper section of the mattress can be raised so making the bed comfortable for eating, drinking or watching tv.
 

AliceA

Registered User
May 27, 2016
2,812
In the community Profiling beds are usually provided. My mum has one of these and it’s great. The height of the bed can be adjusted and as mum is still mobile she has it at the lowest setting and can easily get in and out. The upper section of the mattress can be raised so making the bed comfortable for eating, drinking or watching tv.
We already bought profile bed because I have to be raised at night. These toppers work wellon them. I did get a localcarpenter to put a foot board on divan. This helps a lot too.
 

canary

Registered User
Feb 25, 2014
12,216
South coast
Hooray I now have a bath board!!!! It got delivered today. Another piece in the jigsaw.

I dont have a Statlock @TNJJ . Ive had a rummage through the plastic bag that OH came home with and there is nothing like that in there. I also didnt know about swapping the bag from one leg to another.
I really and truly know nothing about indwelling catheters.

Im sorry I havent responded to all you lovely people who have offered advice and support:-
@Palerider , @Splashing About , @Sirena and @Quizbunny (I hope I havent missed anyone)
I will take on board all your advice. The support has been almost overwhelming.
 

TNJJ

Registered User
May 7, 2019
1,399
cornwall
Hooray I now have a bath board!!!! It got delivered today. Another piece in the jigsaw.

I dont have a Statlock @TNJJ . Ive had a rummage through the plastic bag that OH came home with and there is nothing like that in there. I also didnt know about swapping the bag from one leg to another.
I really and truly know nothing about indwelling catheters.

Im sorry I havent responded to all you lovely people who have offered advice and support:-
@Palerider , @Splashing About , @Sirena and @Quizbunny (I hope I havent missed anyone)
I will take on board all your advice. The support has been almost overwhelming.
I would ask the District Nurse.She can probably order you one.
 

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