Rock Bottom

[Lady M]

No of course he doesn’t understand, we as carers don’t understand from day to day!!
I trust he didn’t do any damage to himself when ripping the bag!!!
DN should be informed and aware and hopefully will visit you today( at best tomorrow....the usual overstretched.underpaid ) if not ring surgery or community nurses for update on when supplies will arrive...plus nurses should be able to give any advice and answer any of your questions..
As I am reminded......welcome to another day in paradise...keep strong...we will all support each other!!
xx

 

[Wifenotcarer]

No of course he doesn’t understand, we as carers don’t understand from day to day!!
I trust he didn’t do any damage to himself when ripping the bag!!!
DN should be informed and aware and hopefully will visit you today( at best tomorrow....the usual overstretched.underpaid ) if not ring surgery or community nurses for update on when supplies will arrive...plus nurses should be able to give any advice and answer any of your questions..
As I am reminded......welcome to another day in paradise...keep strong...we will all support each other!!
xx

Only thing missing from the "supplies" is the stand for the night bag. I do have about a dozen replacement day bags, each one in a pack with sterile wipes and gloves and a pair of tweezers! (purpose unknown). So I was able to attach a new one without much difficulty. Day Care have just phoned to ask for details and assure me that they are all trained in dealing with catheters and bags. OH has already been 'needing a pee' several times in the half hour he has been there and they are giving him the same explanation that I do, which works for 5 minutes. Told me to go and have a sleep while he is there

 

[Lady M]

Only thing missing from the "supplies" is the stand for the night bag. I do have about a dozen replacement day bags, each one in a pack with sterile wipes and gloves and a pair of tweezers! (purpose unknown). So I was able to attach a new one without much difficulty. Day Care have just phoned to ask for details and assure me that they are all trained in dealing with catheters and bags. OH has already been 'needing a pee' several times in the half hour he has been there and they are giving him the same explanation that I do, which works for 5 minutes. Told me to go and have a sleep while he is there

Hi just checking in! Hope all going along Ok glad you’ve had some contact with ‘professionals ‘
Just one thing......OH ‘day ‘ bag is only changed once a week...same with the night bag(which is washed out each morning......!
Might be worth Checking!!!
Bye for now!

 

[Wifenotcarer]

Just one thing......OH ‘day ‘ bag is only changed once a week...same with the night bag(which is washed out each morning......!
Might be worth Checking!!!
Bye for now![/QUOTE]

Not here, I was told to leave day bag alone other than ensuring it is totally emptied twice a day and dispose of night bag after 1 use. I see in the bags of stuff that I have 'Week Bags' which are huge. I have no idea where they fit in to the schedule. I wish the DNs had given me a pamphlet with full instructions, it was too much to take it all in at the time.

 

[Starbright]

When my OH had a catheter for over 8 months I emptied the day bag as and when sometimes 3 or 4 times a day and removed and put a new one every 5 days ...the night bag was a once only use .The night stand was a much better option. I did worry about disposal of the bags but was told just to black bag them and into normal waste.

A x

 

[Wifenotcarer]

Just one thing......OH ‘day ‘ bag is only changed once a week...same with the night bag(which is washed out each morning......!
Might be worth Checking!!!
Bye for now!

Not here, I was told to leave day bag alone other than ensuring it is totally emptied twice a day and dispose of night bag after 1 use. I see in the bags of stuff that I have 'Week Bags' which are huge. I have no idea where they fit in to the schedule. I wish the DNs had given me a pamphlet with full instructions, it was too much to take it all in at the time.[/QUOTE]

 

[Rosa☆]

No idea about week bags!! Or tweezers?!? We've had catheter on and off for a few years between surgeries and permanently since last May. We've always been told to discard/replace the day bag (500ml) weekly. Night bags are 1000 or 1500ml.

@Wifenotcarer did I read a bit further back in the thread that you use white boards. Would it be helpful to have one in bathroom above toilet and door to explain that Dr has fitted a bag to collect urine as things not working and to leave it alone for safety.... not sure if this would halt the fiddling/removing. We found this went on for weeks.

 

[Lady M]

Just one thing......OH ‘day ‘ bag is only changed once a week...same with the night bag(which is washed out each morning......!
Might be worth Checking!!!
Bye for now!

Not here, I was told to leave day bag alone other than ensuring it is totally emptied twice a day and dispose of night bag after 1 use. I see in the bags of stuff that I have 'Week Bags' which are huge. I have no idea where they fit in to the schedule. I wish the DNs had given me a pamphlet with full instructions, it was too much to take it all in at the time.[/QUOTE]
Hi me again!
Yes! The day bag is emptied on a regular basis but disposed off after one weeks usage......night bag similarly
Main reason for post ....Oh been unwell (worse than usual) since Monday......he has another UTI (first since catheter fitted..........when the ADP visited and done the tests she was surprised tha5 he had not been given a course of antibiotics as a matter of course when the catheter had been fitted!
Never mentioned to us at hospital, it maybe wort( mentioning to your professional dealing with OH
Regards!

 

[cuppatea]

Been reading back a bit on your post, oh my huge sympathies, sounds absolutely awful especially the evening disturbances. When you read it in black and white it is startling.

Catheters. OH developed retention of urine when in hospital for heart bypass and valve replacement nearly three years ago after problems with enlarged prostate for some time. He pulled out !!! the entire catheter a few times when extremely confused, and he now has a suprapubic one that goes into the tummy. He used to get the sensation of needing to pee out of his penis as well, and due to the damage he caused himself it leaks and is painful sometimes. There seem to be a great variiety in types of catheter and care advised looking at replies to your posts. We had advice from a continence nurse and that service provided the bags, stand, straps and all the paraphernalia, while the DNs attended once a week to change the day bag. We tried a night bag on a stand but as he continually got in and out of bed it wasn't a great success. He also frequently opens the taps at night and floods the bed. Oh the washing and disturbed nights! They were a factor in the decision that he needed full time care, I was exhausted. He's now been in the care home over a year, and still causes problems at night with opening the bag and flooding the bed - usually telling me the night staff did it... At least there are now other people there to deal with it. He tolerates the suprapublic catheter quite well, the senior nurse changes it every 12 weeks. He has never been offered antibiotics when it's been changed. He has had many UTIs, they have to send the sample away for a culture as there is always some infection with a foreign body in the bladder. I always struggled to get him to drink enough, they do much better there. So the point of this ramble is to say - get the continence service involved for advice, they are the specialists. Bear in mind you could ask about a suprapubic catheter if he is still fiddling, it will be put in in hospital but changed at home just like the one you have already. ( I've been writing so long somebody else has probably said all this...") GOOD LUCK!!!!!

 

[Wifenotcarer]

OH woke me at 8am stark nakkit with no sign of catheter or bags. Found them in the bathroom basin, both bags full of bloody urine and a trail of splashes and drips from his bed to the hall and bathroom. I rang 111 explained and they sent District Nursewho arrived 9.20. She inspected the debris and discovered that the catheter had been cut with scissors above the valve, thus deflating the balloon and allowing him to pull it right out. He denies all knowledge of course. cf "A big boy did it and ran away"

So back to pads and pull ups, wet beds and trousers. The experiment has not worked.

 

[Lady M]

OH woke me at 8am stark nakkit with no sign of catheter or bags. Found them in the bathroom basin, both bags full of bloody urine and a trail of splashes and drips from his bed to the hall and bathroom. I rang 111 explained and they sent District Nursewho arrived 9.20. She inspected the debris and discovered that the catheter had been cut with scissors above the valve, thus deflating the balloon and allowing him to pull it right out. He denies all knowledge of course. cf "A big boy did it and ran away"

So back to pads and pull ups, wet beds and trousers. The experiment has not worked.

Oh my Lordie!!!
How on earth.....I cannot comprehend...better not to try...
Oh WIfenotcarer, how distressing and frightening for you.......but must also have been frightening for him!!!
I, like you , must be relieved that he didn’t do some serious damage with the scissors! I can only imagine it must have still caused pain...(My OH is in hospital with uriary sepsis....catheter cause???? )
Well like you say back to the old routine.......what is meant to be will be!
Wishing you peace, patience and the strength to keep calm and carry on!!!!!
Thinking of you and sending regards
Lady M

 

[Wifenotcarer]

OH woke me at 8am stark nakkit with no sign of catheter or bags. Found them in the bathroom basin, both bags full of bloody urine and a trail of splashes and drips from his bed to the hall and bathroom. I rang 111 explained and they sent District Nursewho arrived 9.20. She inspected the debris and discovered that the catheter had been cut with scissors above the valve, thus deflating the balloon and allowing him to pull it right out. He denies all knowledge of course. cf "A big boy did it and ran away"

So back to pads and pull ups, wet beds and trousers. The experiment has not worked.

Oh my Lordie!!!
How on earth.....I cannot comprehend...better not to try...
Oh WIfenotcarer, how distressing and frightening for you.......but must also have been frightening for him!!!
I, like you , must be relieved that he didn’t do some serious damage with the scissors! I can only imagine it must have still caused pain...(My OH is in hospital with uriary sepsis....catheter cause???? )
Well like you say back to the old routine.......what is meant to be will be!
Wishing you peace, patience and the strength to keep calm and carry on!!!!!
Thinking of you and sending regards
Lady M

Oh my Lordie!!!
How on earth.....I cannot comprehend...better not to try...
Oh WIfenotcarer, how distressing and frightening for you.......but must also have been frightening for him!!!
I, like you , must be relieved that he didn’t do some serious damage with the scissors! I can only imagine it must have still caused pain...(My OH is in hospital with uriary sepsis....catheter cause???? )
Well like you say back to the old routine.......what is meant to be will be!
Wishing you peace, patience and the strength to keep calm and carry on!!!!!
Thinking of you and sending regards
Lady M

Thank you for your reply when you don't have your own troubles to seek. I have been thinking of you too and hoping your OH was recovering now. Thankfully, no sign of a UTI here though the house and myself stinks of bleach and disinfectant. Another day a new hill to climb.

 

[Wifenotcarer]

Thank you for your reply when you don't have your own troubles to seek. I have been thinking of you too and hoping your OH was recovering now. Thankfully, no sign of a UTI here though the house and myself stinks of bleach and disinfectant. Another day a new hill to climb.

 

[Wifenotcarer]

The final straw that broke this camels back was not the catheter hell and the subsequent wetting everything in sight, while demanding my attention and assistance every 20 to 30 mins as he was 'bursting# though he only managed to produce a tablespoonful or sometimes, after much huffing and puffing, nothing at all. No - it was the post bringing 2 different lengthy questionnaires - 1 to assess how I felt about the Day Care facility and the other to assess 'other services excluding Day Care' they asked if I felt my own health and/or my OH's health had improved (on a scale of 1 to 10) since accessing these services. FGS he has advanced dementia his health will not, cannot improve!!!

The other letter was from HMRC issuing a £100 penalty + £10 a day until they receive the return, for failure to submit a tax return for OH. I know and they should know that OH is not required to submit a return as he has only his state pension and a small private pension which is taxed at source. I spent half the day trying to contact HMRC without success. They will not discuss penalties on the phone and when I was nearly through an on-line 'discussion' with what appeared to be a robot, I was cut off because I had failed to reply to a question within 2 minutes (taking OH to the loo). The next day (OH at daycare) I phoned again, and by dint of lying about the purpose of the call was put on hold waiting for an advisor. Managed to make and eat my lunch while clutching the phone and after 35mins a human being spoke and the matter was resolved in 5 minutes. Apparently although OH's record showed that he retired and closed his business in 2004 this data had not been transferred to the database for sending out Tax returns. I have therefore completed 14 annual tax returns on his behalf when they were not required.

 

[Wifenotcarer]

Over the past couple of days I have spoken to both Daughters, my Sister and my support worker about my need for either more respite or a move to a care home. All have in general been supportive and have said that now is the time to investigate possibilities, rather than wait for a crisis. I, therefore phoned our allocated Social Worker yesterday (not at work, now part time). I left a message to call me and she did this morning.

She did agree that there was little point in having a trial run of carers coming in to wash and dress OH as they would no sooner be gone when he would be wet again. However she thought that it was premature to be thinking about a care home - best to let things settle after the catheter trauma and see how I feel then. I told her in no uncertain terms that I could not carry on like this. She said that she would arrange emergency respite, which she did. OH to go in on Monday for a fortnight.

Then having questioned me in detail about OH's waterworks she more or less demanded that I have him checked by a GP immediately in case of damage to urethra or infection, or a bit of catheter left inside. I tried to get an emergency GP appointment but none available, nor anyone free to do a home visit, but was promised a phone call. It was actually the DN who attended when OH cut out his catheter who called. She was quite indignant that this had been raised, as she was 100% sure that the whole catheter was out and that there was no infection. I explained that it was not me that was raising concerns, only the SW. Nurse said she would phone her and tell her categorically that OH's problems were dementia related and not medical at all. She was a bit irate and said 'typical SW trying to pass the buck to the NHS'.

I wish the two 'sides' of the Health and Social Care partnership would actively try to work together for the good of their clients/patients. In this instance it is not even a question of funding, as we will be self funding to the tune of £1,200 or more for the fortnights stay in respite (approx £800 per week less 20% refunded by the Scottish Government for Free Personal Care).

 

[Grannie G]

However she thought that it was premature to be thinking about a care home

I think it`s your decision rather than the SW`s decision @Wifenotcarer

It`s painful enough for you to come to this decision without a well meaning [aka do gooder] SW telling you what you should and should not do.

None of us make these decisions lightly and there are enough misgivings without someone telling you you are wrong.

 

[LynneMcV]

I agree with @Grannie G , this has to be your decision, not the SW 's. You are the one coping with your lovely OH's care daily, and if it is now at a stage where you feel you can no longer cope, that is for you to assess, not the SW, whose involvement and understanding of the situation is coming only from the sidelines.

Nobody takes this kind of decision lightly and it is ludicrous that you should find yourself and your husband in the middle of some kind of battle between the professionals who should be offering seamless, joined-up care and support.

I am glad that you have emergency respite coming up. I hope it gives you a much needed break, as well as time to think more clearly about the best way forward, whatever it might be.

 

[canary]

I agree that it shouldnt be the SWs decision re a care home, but the trouble is that if Social Services/Local Authority will be contributing towards his care (I dont know how it works in Scotland) then you will probably have to persuade the SW that it is time.

Start looking at care homes now - the good ones usually have waiting lists.

 

[Wifenotcarer]

My chosen Care Home is in our village. It is at the other end of the street where we live. five minutes walk away. My Uncle lived there happily, for 5 years until his death and I know the staff (most of whom have been there for years) and they are kind and caring, the home is always spotless and they have glowing reports. They have a dedicated Dementia wing.

Problem is that it is Local Authority run and the gateway to a placement is via Social Work. Our Social worker is a WASPI woman. i.e. she should have retired a couple of years ago but is forced to work on to secure her pension. She has been off sick more than at work for the past year and has recently returned part-time 3 mornings a week. I do feel for her - she was very helpful and understanding when we started this Dementia journey, but is now as much use as a chocolate teapot. However, now that I know which days she will be working I can ensure that I call when she is off and I will be passed to the Duty Social Worker.

Finance should not be a problem as OH will, at least initially, be self funding. We will pay full whack less 20% for free personal care funded by the Scottish Government, not the LA.

 

[Wifenotcarer]

Last night, I told OH that he is going for respite for a few days. He was Ok about it. He thinks he is going there to be assessed re his waterworks, to see if they can come up with a solution. He was the most lucid he has been for weeks, telling me that it will be a nice break for me and apologising for all the extra work I have had.

Not so this morning. Wet bed and bathroom floor at 6.40 and again at 7.30. At 8.00, up again but I got him to the toilet in time for explosive poo (Yuck). He has gone back to changed bed again. has forgotten last night's conversation. Must go he's up again