Self catheterisation

[Starbright]

Nope

Hi @canary .. I would ring the consultant again after all he did say he would call you back last week ...Its madness that they are expecting your OH to do this with the complications he already has...sorry I’m no help but hoping they see sense and just get a district nurse to you.
Take care and good luck A x

 

[Amy in the US]

Canary, I appreciate it may well be different in the UK, so please feel free to ignore my advice.

For what it's worth, I have worked for doctors and the consultant leaving you hanging may not really have a grasp of what you're going through. I would, politely but firmly, contact their office/nurse/receptionist/whomever and explain the situation, concisely but clearly. Then ask the best way to get a message to the consultant: email, voicemail, written letter, message with the nurse/office staff, telegram, what have you. Then I would contact the consultant once in that way, with all the information. I would wait a short time after you know they have the communication, maybe 2-3 business days, and then keep contacting them at intervals until you get the information you need.

If you get someone on the phone who is sympathetic, get their name and talk to that person each time. If you can get an email address, I would go that route, as it leaves a paper trail. Failing that, you might write a letter, and fax it and mail it.

If the admiral nurse or your GP or similar can advocate for you, that's another possible route.

If I have overstepped, please forgive me. I know physicians are overworked, but cannot abide a doctor or doctor's office, who will not help a patient.

 

[Amy in the US]

Postscript: you probably knew all that. I'm sorry, I was upset on your behalf. No offense or insult intended.

 

[canary]

No offense or insult intended.

None taken
You and @Starbright are right, I need to contact his secretary, but at the moment OH is having mega amounts of seizures again and Im trying to get him out of them. He also has 3 appointments for other things in London next week that I need to sort. I think this will have to go on the back burner for a while.

 

[Bunpoots]

(((Hugs))) @canary

It never rains but it pours!!!

 

[Lindy50]

Oh @canary!!
Hope OH is better soon.
(((Hugs)))
Lindy xx

 

[canary]

The seizures are becoming hard to manage - Ive just got back from helping OH up from the bathroom floor. Its OK, I didnt lift him - he just had to be talked through how to get himself up using the grab rails. Thank goodness one of the appointments next week - the one on Monday to be precise - is for the epilepsy specialist.

 

[Starbright]

The seizures are becoming hard to manage - Ive just got back from helping OH up from the bathroom floor. Its OK, I didnt lift him - he just had to be talked through how to get himself up using the grab rails. Thank goodness one of the appointments next week - the one on Monday to be precise - is for the epilepsy specialist.

You really have it tough @canary and my heart goes out to you....I do hope the next appt goes well and you get the help you need with Oh and the seizures.
Take care ((( here’s a hug ))) A x

 

[canary]

All hugs gratefully received

 

[canary]

UPDATE

It has taken a while, but OH has been referred to the continence clinic (via the GP) and saw the nurse yesterday.
I explained the problems with difficulty sequencing and learning new tasks and also about the hand tremour. She was sympathetic, but very insistent that he should at least try the self catheterisation. OH (of course) sounded extremely on the ball so she showed him what to and he said he understood . Fortunately she got him to actually do this and it became very obvious very quickly that he was completely unable to do it and she had to pretty much do it for him. However - she now wants me to do it for him . Im not very happy about this - he was wincing, groaning in pain and going ow ow! all the while she was doing it (even though she was using the one with the smallest tube). Im really quite scared of doing it in case I hurt him and I honestly dont know whether he will allow me to do it.

The catheters have now arrived and Im supposed to do this three times a day...........
Any advice?

 

[Izzy]

Oh goodness - I don't think that's acceptable. My husband had a catheter for a fortnight and the district nurse came to change it for him. I emptied the bags of course but there's no way I would have agreed to putting it in. I doubt if he would have let me do it either - he let the nurse do but I don't think he would have let me do it. I would be tempted to tell them you've tried and it he won't let you do it. My husband also spent most of the two weeks trying to pull it out.

Wishing you luck.

 

[canary]

Ah, I think your husband had an indwelling catheter, which does have to be inserted by a nurse.
OH has got self catheters which are used to drain the bladder and are then binned - they dont stay there all the time. Its supposed to be done by the person themself, but the nurse wants me to do it

 

[Izzy]

Ah, I think your husband had an indwelling catheter, which does have to be inserted by a nurse.
OH has got self catheters which are used to drain the bladder and are then binned - they dont stay there all the time. Its supposed to be done by the person themself, but the nurse wants me to do it

Oh yes - you're right! I wasn't thinking straight there. Still I would not have been happy doing what they're suggesting you do.

 

[Baby Bunty]

Hi . Some off these health professionals have no idea!.i find this totally unacceptable .i would personal opt for supa pubic and.and get d/ n to change it every 6 weeks..if they want self cath ..they should organise a d/n to come on do 4 times a day!!Think off you

 

[canary]

Im glad its not just me being a wimp, Izzy and baby Bunty

If this doesnt work, yes OH would have to have a supra-pubic catheter, but that would involve a general aneasthetic to form the outlet and I know the risk of further progression of his dementia with a GA.

I feel in a lose, lose situation

Has anyone else on here had to do this?

 

[Starbright]

I feel for you@canary..I too think what they are asking is not acceptable.....when himself had huge prostate problems 2 years ago I emptied his catheter for nigh on 6 months it was changing morning and night and that was bad enough...but to do what they are expecting you to do No,just my view others may think differently.
Maybe you just have to go for the Supra ...once in would that be less stressful for you both.?
I’m sorry I can’t be more help

Thinking of you here’s a ((((((hug)))) A x

 

[Starbright]

@canary I should have said my husband did in the end have an operation on his prostrate under GA...whether it pushed on his dementia we don’t know but it did make life a bit easier. We can never really know whether we make the right decisions with this illness do we, all we can do is our best .
Thinking of you A x

 

[AliceA]

This I should say not personal experience, but a friend's husband spent months of blocked catheters. Eventually forced by continuing 111 calls a spell in hospital to retrain the bladder did not work but he is happier with pull-ups and she with the resulting washing. The catheters caused nights of agony waiting on medics.
She became an expert on what could go wrong with catheters.

 

[canary]

He has to have a catheter of some sort @AliceA . He is not incontinent - in fact,quite the opposite - he is getting urine retention as he cannot empty his bladder. If I had a choice over it I would not choose any sort of catheter either.

 

[Amy in the US]

Canary, you are not being a wimp. I wouldn't want to do this either, not just from a squeamish standpoint, but also because I wouldn't want to be doing this procedure multiple times a day on someone with dementia. I would be concerned they would build up a negative association with me and the catheterization. I would also be concerned about the mechanics of this procedure maybe putting me in a vulnerable physical position if he got upset (I am sorry to say this, but am imagining catheterizing my OH and he is so much bigger and stronger than I am-there is no way I would want to do this).

I am sorry they did not listen to your concerns and I am with you all the way.

My only thought is having a nurse or professional carer come and do this.

I hope you can find a solution. I'm so sorry. (((Hugs)))