[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 585: sizeof(): Parameter must be an array or an object that implements Countable
[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 641: sizeof(): Parameter must be an array or an object that implements Countable
Carers UK Forum • Dealing with nurses when husband/patient is non compliant. - Page 2
Page 2 of 3

Re: Dealing with nurses when husband/patient is non compliant.

Posted: Thu Oct 31, 2019 1:48 pm
by Sall the Bibliophile
Are you able to get a carer in whilst you go out? You may have to pay a contribution but it would be considerably less than full costs. I would say threaten to walk out but I doubt it would do any good. Have you had a carers assessment? What was the outcome of that? I wish I could wave a wand for you, unfortunately you have very few options and the best one is just sit it out, it's going to be hard but not as hard as constantly fighting him I'm sorry to say.

Re: Dealing with nurses when husband/patient is non compliant.

Posted: Thu Oct 31, 2019 3:01 pm
by helena_1512
No I do not think a carer would work frankly - also financially it would be tough and he would not let a stranger into his home.

I have my Norwegian Forest cats so even a Key Safe is not a viable option as they are indoor cats - I used my pension lump sum to extend the cat enclosure and make the garden safe for the cats with climbing frames and they access it via a tunnel from the upstairs bathroom. Walking out is not an option due to the cats - if I had not got them I would have long gone.

I cannot see how a Carers Assessment would help as he would expect to be there when it was carried out.. Also financially I just cannot afford the amount I would need to pay for Carers. He has a private SIP and a state pension. I am not really sure what a carer would do as he can get in and out of the bath although I do worry when he locks the door. He did fall down in Feb on the way to the taxi, and his head wound has still not healed. I do prompt re the tablets and put them out, but his latest trick is spilling them - total nightmare as if the cats played with them and licked them it could be fatal. Yet I cannot pour them into his mouth as that would be abuse. I did wonder if he has some sort of neuropathy and is maybe losing control of his hands.

I just have to get out when I can, even if he has to come too. I doubt he will come as much if we have a bad Winter as he does vary very much day to day and the bowel problem is very restricting he has divictulosis (excuse spelling) and when he gets a build up is in a great deal of pain yet he won't take the medical advice to have the lactulose daily but only a small amount. He overdoses then goes onto the picosulfate and this causes pain and explosions which I really resent having to deal with.

But he is awake now so have to try to get him to have the picosulfate and see if I can get a dressing on his bottom. WAy I am feeling right now, might just leave it and not remind him! At least it will delay the explosion for a day.

Re: Dealing with nurses when husband/patient is non compliant.

Posted: Thu Oct 31, 2019 3:09 pm
by thara_1910
helena_1512 wrote:
Thu Oct 31, 2019 3:01 pm
No I do not think a carer would work frankly - also financially it would be tough and he would not let a stranger into his home.

I have my Norwegian Forest cats so even a Key Safe is not a viable option as they are indoor cats - I used my pension lump sum to extend the cat enclosure and make the garden safe for the cats with climbing frames and they access it via a tunnel from the upstairs bathroom. Walking out is not an option due to the cats - if I had not got them I would have long gone.

I cannot see how a Carers Assessment would help as he would expect to be there when it was carried out.. Also financially I just cannot afford the amount I would need to pay for Carers. He has a private SIP and a state pension. I am not really sure what a carer would do as he can get in and out of the bath although I do worry when he locks the door. He did fall down in Feb on the way to the taxi, and his head wound has still not healed. I do prompt re the tablets and put them out, but his latest trick is spilling them - total nightmare as if the cats played with them and licked them it could be fatal. Yet I cannot pour them into his mouth as that would be abuse. I did wonder if he has some sort of neuropathy and is maybe losing control of his hands.

I just have to get out when I can, even if he has to come too. I doubt he will come as much if we have a bad Winter as he does vary very much day to day and the bowel problem is very restricting he has divictulosis (excuse spelling) and when he gets a build up is in a great deal of pain yet he won't take the medical advice to have the lactulose daily but only a small amount. He overdoses then goes onto the picosulfate and this causes pain and explosions which I really resent having to deal with.

But he is awake now so have to try to get him to have the picosulfate and see if I can get a dressing on his bottom. WAy I am feeling right now, might just leave it and not remind him! At least it will delay the explosion for a day.
The best option is a good care home. This is a online directory of care homes in Britain https://www.carehome.co.uk.

Re: Dealing with nurses when husband/patient is non compliant.

Posted: Thu Oct 31, 2019 3:41 pm
by Sall the Bibliophile
I think BB would know for sure but I didn't think the caree is allowed to be at the carers assesment? He may be allowed to sit in a waiting area but as far as I'm aware not present in the room. Your cats sound wonderful which I must admit I'm not a cat lover they tend to bite my toes but your's sound adorable. Hmm I'm at a loss, as to practical advise with this now, I was hoping the assesment would identify you as struggling and unable to self fund so would get financial support and if he refused he may then be seen as not having mental capacity {is those the right words I don't mean to offend but am not 100% sure}. It's a long shot though.

Re: Dealing with nurses when husband/patient is non compliant.

Posted: Thu Oct 31, 2019 3:48 pm
by bowlingbun
The Carers Assessment should ideally be done completely separately from the Needs Assessment, so that you can cry, scream or anything else you want to do without the caree knowing. It is possibly the only time anyone focuses on the carer and what he or she wants. So often we are seen as some sort of "handmaiden" to the caree!!

Sometimes carers are given a budget to look after their own needs.

Re: Dealing with nurses when husband/patient is non compliant.

Posted: Thu Oct 31, 2019 4:03 pm
by Sall the Bibliophile
Thank you BB, I knew I'd seen something but couldn't remember you're a star

Re: Dealing with nurses when husband/patient is non compliant.

Posted: Thu Oct 31, 2019 4:16 pm
by helena_1512
I did investigate and found an online form for my area for a carers assessment. I could fill it in but they would then follow up with phone call and of course, he would be there. Also I think there is a long wait. I am hoping that once I get a new Befriender from my local Carers Association, they might be able to guide me and let me know if it is worth going down this route,and what locally tends to be offered. But I do think we would be expected to be self funding given his pension (which as a SIP won't last forever)!

If he went into a care home, they would take ALL his state pension and half his private pension at least. I would happily look for a job but being realistic at 57, it would not be a high paying one and my confidence is so low that I would ideally like to do some vol work first. I do chair a Book Club, and am a member of Rotary and have helped out at events so hopefully that would prove I am still just about keeping my brain alive. I am with him 24/7 and dare not go against him. Frankly I am waiting for a crisis to happen as in a fall that happened in Feb, hopefully in public when he will be taken into hospital. I do not know how he exists eating so little but then he does not move much. I have been trying since he woke up at 2.30ish to get him to stand up so I can put the dressing on his bottom, take his picosulfate and put some underpants on!!!! I shall give him the pills at 5pm and remind again. His weight has gone down and when he does not have the retention is a little over 8st rather than 8st 7 a year ago.

I do not think he would go into a home and whilst he is considered to have 'Mental Capacity' it would be almost impossible to make him - I went through this with my late father. I am going to try and contact the Admiral Nurses and see if they have any ideas re progressing the dementia thing - the dietician did agree that the lack of self care and appetite should be a red flat - add it to the non compliance and a couple of the nurses seem to think it could well be dementia.

I just cannot understand how he does not realise how dangerous it is to have open wounds and a dirty dressing gown!

Well rant over. I am calmer now and better at disengaging than I was when I started posted a few years ago. I realise if he has 'Mental Capacity' and wants to ignore medical advice then sadly it is his choice.

Re: Dealing with nurses when husband/patient is non compliant.

Posted: Thu Oct 31, 2019 5:06 pm
by Pet66
Oh Helena
It reminds me of when my hubby was going down the Dementia route! He had an accident. ( Urine). He would have been mortified pre dementia, and certainly wouldn't have thrown his pants and trousers on my clean washing. He wouldn't put pants on, and I was going mad!! I kept saying the kids may call in, etc etc, and he just didn't seem to comprehend. My deep thoughts were dementia. He eventually sat with pants round his knees, then on. He was the most proud dignified man. Broke my heart. It must be so so dreadful for you, as your feelings have changed for him
All of the things he does, out of character, I expect you already know, but keep a diary of them, so eventually you can produce the evidence. You may get help with funding?
Think of you lots x

Re: Dealing with nurses when husband/patient is non compliant.

Posted: Thu Oct 31, 2019 5:13 pm
by Sall the Bibliophile
Ah one thing I do know about, you can fill in the carers assesment form BUT you do not have to see them in person or take a phone call, it can and mine is done by email. Admittidly I'm deaf but it's still all done by email. All you have to do is request contact via email only. I would highly recommend filling in the form and replying to the emails when you feel most stressed and upset as that's when you are going to most honest about how you are coping and how bad things are.

I suspect he doesn't understand so that's why he's not keeping sores clean etc. Sorry not helpful I know.

Re: Dealing with nurses when husband/patient is non compliant.

Posted: Sat Nov 02, 2019 7:01 am
by helena_1512
Thanks ladies. I shall phone the local Carers centre on Monday to see what is going on with my Befriender and see if I can have a new one if she is not coming back. She was a lovely lady and she too had conflicting advice from the nurses when she cared for her late husband. It may get to the stage where I need an Advocate to would like to stay in the loop.....

Two nurses came yesterday - one was a trainee and a dog groomer so we had a good old chat about grooming. They just could not have been more different to the Tuesday lady. I walked them to the door and said that part of the problem managing the sores was his non compliance. The senior one did say that they were there to help me and anything they could do to make my life easier they would do as in telling him what he should be doing. I pointed out that several of the nicer nurses had done that already! I am afraid I could not stop crying when they left! I do understand that my husband is not being cared for in ideal circumstances BUT the NHS cannot have it both ways. If he has Mental Capacity then surely he should realise how dangerous the pressure sores can be?

I will start to draft out another letter to his #GP expressing my frustration with his lack of compliance and also see if I can get the name of the head of the District Nurses. At least it keeps the GP in the loop! I honestly think it will come to crisis point when he will be taken into hospital when he collapses, before things will get easier.

But I have my Book Club next week plus I am going to help out at a few Rotary collections for Xmas - only two hour slots and usually quite local so should only be away for 3 hours and many are evening or weekends when at the moment, we do not have a nurse.

Thanks again. I will have a good think about a Carers Assessment but the bottom line is I cannot afford to pay for Carers and at the moment he can get to the bathroom on his own despite accidents, which in fairness are mainly due to the lactulose/pico sulfate not being taken properly. I do not think he would let anyone in to 'watch ' him and he only eats Fortisips and cakes/biscuits/chocolates/ice cream and won't eat microwaved meals. I cannot easily go for a key safe as I would worry dreadfully about the carer letting the cats escape. I do lock the younger cats in the two upstairs bedrooms when I do the occasional cat show but still worry and do a role call as soon as I am home to make sure they are all accounted for.

It has been a horrible 2 weeks and I can honestly say the support on this Forum - all given voluntarily and free of charge is fantastic. Cannot thank the people who run it and the people who contribute enough.