Non compliance with District Nurses re pressure sore

[Krug 22]

I live with my 80 year old husband - I am 57. He has not been diagnosed with dementia but when he had a brain heamatoma back in 2013, he had significant atrophy even taking into account his age and drink dependence. I remain convinced given his non co-operation and lack of personal care such as not doing his teeth that he has dementia. I have written to his GP but he has mental capacity so we cannot really progress without his agreement. I am also quite frightened of him.

He has lost weight and is around 8st 7 despite help from a dietician. He lives off Fortisips basically although I do try to get him to eat fruit and solid food.

We had the nurses visiting 2x a week and but they cut it down to one due to his non compliance. He now has a grade 2 pressure sore as well as the moisture lesions. He does not take the lactulose/picosulfate so we are dealing with explosions too. He does not move around much and the pressure cushion he has been given is often on the floor or behind his back! He does not sleep on the bed but on the push up sofa. In fairness, we have a Saniflow bathroom upstairs and I dare not risk him flushing things down the loo such as the pads or he will bring the ceiling down. He won't leave the dressings on his bottom or head to give time to heal - he fell end Feb and we are still dealing with a non healing wound.

I understand the nurses frustration but I have offered to help move round things and sort out his office so he can have a bed downstairs but he won't let me and has threatened to get the police round if I dispose or his things old tv's/video's et al et al - hoarding is a sign of dementia. He also has threatened to have my friend arrested as I would need help to move things around.

At times I feel guilty as he is a frail old man BUT he has lashed out and I am NOT prepared to risk my physical or mental health by forcing him to use the creams or physically putting dressings on against his will. I have written to his GP stating this and she was very good.

So in my opinion this self neglect is a sign that he does not have mental capacity but I do realise that getting the medical profession to progress this is not going to happen unless it reaches crisis point. Some of the nicer nurses have explained septis to him and how a grade 2 pressure sore can deterioate and need daily dressing quite quickly. But he still won't comply.

Any thoughts on what else I can do? I cannot easily leave the house or I would actually go and get legal advice. Not in a position to leave sadly but I would if I could as he is a very difficult nasty old man - I do realise he is frightened and maybe realises something is wrong and needs compassion but it is so hard. He wont' do his teeth, won't wear his Hearing Aid, or use the drops to clear out the wax.

Thanks for reading. Wish there was an answer but in a way if he developed Septis they would at least realise he is a danger to himself. But I do realise that this can be serious even fatal.

 

[canary]

I think that you are in a very difficult position @Krug 22 and I quite understand your reticence.

Would it help to talk to an Admiral nurse? They are specially trained in dementia. I have phoned them myself and found them very helpful.
The telephone helpline can be accessed by calling 0800 888 6678.

 

[TNJJ]

Hi.I have very similar issues with dad He is 86 and will not take his lactose for the carers.He cannot walk so that is a bonus.Dad takes the lactose for me after an argument or two.He will go 5 days without going.I have been quite blunt with him and said that if he keeps it up he will end up in hospital.So.,he eventually takes it. He likes toast for breakfast and some of the carers give it to him,even though he has a soft diet.I have told them till I am blue in the face and put notes everywhere.!I have reminded them that if he chokes they are personally liable!I have now removed the toaster,but there will always be that one that does it.Dad does not have understanding of it but thinks he can eat what he likes.They will give it to him as he has “asked”!..Dad has capacity in some things but not all.He cannot have anything to do with money anymore as he does not understand it.But has capacity to choose breakfast but not understand he can choke.He has Vascular Dementia.Yes,self neglect would certainly be a factor to consider..I would do as canary suggests.But sometimes as much as we want to help ,we are not allowed to by the PWD..So,If a crisis has to occur,so be it..I don’t live with my dad for the simple reason I couldn’t cope with him.I can appreciate your circumstances though which is totally different to mine..

 

[Krug 22]

Hi.I have very similar issues with dad He is 86 and will not take his lactose for the carers.He cannot walk so that is a bonus.Dad takes the lactose for me after an argument or two.He will go 5 days without going.I have been quite blunt with him and said that if he keeps it up he will end up in hospital.So.,he eventually takes it. He likes toast for breakfast and some of the carers give it to him,even though he has a soft diet.I have told them till I am blue in the face and put notes everywhere.!I have reminded them that if he chokes they are personally liable!I have now removed the toaster,but there will always be that one that does it.Dad does not have understanding of it but thinks he can eat what he likes.They will give it to him as he has “asked”!..Dad has capacity in some things but not all.He cannot have anything to do with money anymore as he does not understand it.But has capacity to choose breakfast but not understand he can choke.He has Vascular Dementia.Yes,self neglect would certainly be a factor to consider..I would do as canary suggests.But sometimes as much as we want to help ,we are not allowed to by the PWD..So,If a crisis has to occur,so be it..I don’t live with my dad for the simple reason I couldn’t cope with him.I can appreciate your circumstances though which is totally different to mine..

 

[Krug 22]

Thanks Canary and TNJJ> I will give the line a call - bit of a problem as landline in room where husband is always sitting although he does doze a lot. I have a mobile but reception not that good in the garden - but I will try.

TNJJ husband goes 8 even 9 days without passing motions. He then gets tummy ache and takes lactulose by the swig and picosulfate so we get 'explosions'. I too have mentioned blockages to him many times,. In fairness, his GP and his Consultant have been 5* and explained if he had a little latulose each day it would not get to the pain stage - he won't take the Cosmocol either. I cannot understand how, if he has capacity, he puts himself through so much pain. Also the explosions and at times, incontinence, due to the lactulose, do not help the moisture lesions and Pressure Sore. Today, he has had a bath at 8am and then dozed, no underpants and dirty dressing gown next to open wounds. No cream applied either. I will try and prompt re the cream when he wakes up. I did put a clean dressing gown in the bathroom for him but he has not put it on. I am totally isolated as have no family. I do have good friends though.

I do think some of the nurses cannot understand why I do not just put cream on his sores BUT he has to stand in the right position, and they are so sore, I am scared of hurting him and him lashing out. I do try and help by directing his hands.

He is very confused at times and in town he starts walking the wrong way towards the taxi rank when we occasionally get a taxi into town. We are at different GP Surgeries ( He threatened to sue my GP several years ago when he thought he was confused!) otherwise I would go and see his GP but frankly it is hard to get out, and very hard to get an appointment with her even for him. I think she is quite good and sees him for what he is.

All I can say to you TJJJ is to write to his GP and get your concerns on file. I agree it is going to get to a crisis, but I just hope I can cope long enough until this happens.
,

 

[TNJJ]

Thanks Canary and TNJJ> I will give the line a call - bit of a problem as landline in room where husband is always sitting although he does doze a lot. I have a mobile but reception not that good in the garden - but I will try.

TNJJ husband goes 8 even 9 days without passing motions. He then gets tummy ache and takes lactulose by the swig and picosulfate so we get 'explosions'. I too have mentioned blockages to him many times,. In fairness, his GP and his Consultant have been 5* and explained if he had a little latulose each day it would not get to the pain stage - he won't take the Cosmocol either. I cannot understand how, if he has capacity, he puts himself through so much pain. Also the explosions and at times, incontinence, due to the lactulose, do not help the moisture lesions and Pressure Sore. Today, he has had a bath at 8am and then dozed, no underpants and dirty dressing gown next to open wounds. No cream applied either. I will try and prompt re the cream when he wakes up. I did put a clean dressing gown in the bathroom for him but he has not put it on. I am totally isolated as have no family. I do have good friends though.

I do think some of the nurses cannot understand why I do not just put cream on his sores BUT he has to stand in the right position, and they are so sore, I am scared of hurting him and him lashing out. I do try and help by directing his hands.

He is very confused at times and in town he starts walking the wrong way towards the taxi rank when we occasionally get a taxi into town. We are at different GP Surgeries ( He threatened to sue my GP several years ago when he thought he was confused!) otherwise I would go and see his GP but frankly it is hard to get out, and very hard to get an appointment with her even for him. I think she is quite good and sees him for what he is.

All I can say to you TJJJ is to write to his GP and get your concerns on file. I agree it is going to get to a crisis, but I just hope I can cope long enough until this happens.
,

Hi..I have written to dad's GP and he has been good.We have spoken on the phone.I have Health and Welfare POA.He has said to dad about going into a home and of course his reply is the default "NO"! So that will be my crisis which I know is going to happen..But, hey ho..

 

[Krug 22]

Hi..I have written to dad's GP and he has been good.We have spoken on the phone.I have Health and Welfare POA.He has said to dad about going into a home and of course his reply is the default "NO"! So that will be my crisis which I know is going to happen..But, hey ho..

 

[Krug 22]

We can only do our best and like you, I am resigned to it getting to crisis stage. But glad you have his GP on side.

 

[Beate]

Have you ever had a social services assessment? You must call them asap. They need to come and see him, and if you can't speak in front of him, write it all down and hand it over. They must be told that you are frightened of him and that he can lash out - that's serious.

In my opinion you should be given respite, I.e. him going to a care home for a few weeks with an option to making it permanent. I have honestly no idea how you have managed this long!

You might also want to contact your local Carers Centre or Alzheimer's Society and ask for their support including advocacy. They can help you deal with social services.

 

[Krug 22]

Thank you for your reply Beate. Yes I did have a very good Carer befriender from my local branch but she is ill and I am waiting for her to return - that said, he is in the same room as the landline so hard to talk openly. I have no dealing with Social Services. I frankly cannot afford to push the Residential Home as if they took his state pension and his private pension I would have nothing to live on. Yes, I would happily work but am 57 and do not drive so would not be able to get a job easily and it would be low paying. I have been a carer officially since Jan 2013 but unofficially for probably 3 years before this. He was drinking nearly a litre of vodka a day back in 2013 when he had the falls and the heamatoma. Also if he has Mental Capacity no way could they get him into a Home.

I do like the Advocate idea if I do end up having to deal with Social Services.
No way would he go into Respite Care and no, they cannot make him if he is considered to have Mental Capapacity.

We have indoor cats so me leaving is not an option. Also I dare not upset him in case he lets them out - they have no road sense and his attitude would be 'oh I am 80 and he/she managed to get past me'. I will walk around on eggshells to protect my cats.

Back in April 2013 I and his then GP asked to have him sectioned but the Mental Health Team who came out did not feel this was necessary although it was borderline. I would say that my life was even more difficult after this - he then was diagnosed with the heamatoma in the July so my feelings that something was very wrong were proven correct as it was an acute on chronic heamaoma on the brain and had been building up for weeks even months.
So I am wary of getting professionals involved. He can be quite convincing although I think most of the regular nurses can see him for what he is.
I just have to try and get through this and yes, it will end up in a crisis.

 

[canary]

Social Services wont just push to get him into a care/nursinghome, in fact they do everything they can to keep people at home.

They know about services that maybe you dont and will assess him to see how he can be helped - perhaps with carers to assists with personal care, or a day centre..
It is far better to try and manage this than wait for a crisis (although sometimes there is no option)

 

[Rosettastone57]

Thank you for your reply Beate. Yes I did have a very good Carer befriender from my local branch but she is ill and I am waiting for her to return - that said, he is in the same room as the landline so hard to talk openly. I have no dealing with Social Services. I frankly cannot afford to push the Residential Home as if they took his state pension and his private pension I would have nothing to live on. Yes, I would happily work but am 57 and do not drive so would not be able to get a job easily and it would be low paying. I have been a carer officially since Jan 2013 but unofficially for probably 3 years before this. He was drinking nearly a litre of vodka a day back in 2013 when he had the falls and the heamatoma. Also if he has Mental Capacity no way could they get him into a Home.

I do like the Advocate idea if I do end up having to deal with Social Services.
No way would he go into Respite Care and no, they cannot make him if he is considered to have Mental Capapacity.

We have indoor cats so me leaving is not an option. Also I dare not upset him in case he lets them out - they have no road sense and his attitude would be 'oh I am 80 and he/she managed to get past me'. I will walk around on eggshells to protect my cats.

Back in April 2013 I and his then GP asked to have him sectioned but the Mental Health Team who came out did not feel this was necessary although it was borderline. I would say that my life was even more difficult after this - he then was diagnosed with the heamatoma in the July so my feelings that something was very wrong were proven correct as it was an acute on chronic heamaoma on the brain and had been building up for weeks even months.
So I am wary of getting professionals involved. He can be quite convincing although I think most of the regular nurses can see him for what he is.
I just have to try and get through this and yes, it will end up in a crisis.

On the finances side, is attendance allowance being claimed ? If so, are you claiming carers allowance? Power of attorney? You are entitled to a carers assessment by law

 

[Beate]

Use your mobile in another room, get a phone that you can take out of its cradle or obtain email addresses - but you must do something. This isn't sustainable, and SS are not the enemy. Worry about the finances after an assessment. See what's available first. You need help so don't delay.

 

[LizzieM]

Please do contact the Admiral nurses (as per Canary’s reply see #2) - they can be brilliant and can also help with Adult Services/Social Services too. They will help support you through this. One thing you cannot do is leave it as it is. Sending strength - you’ve already started the process in a way by coming on here and sharing , now it’s time to take the next steps. Don’t let dementia take two minds and lives. We’re with you.

 

[Bod]

Thank you for your reply Beate. Yes I did have a very good Carer befriender from my local branch but she is ill and I am waiting for her to return - that said, he is in the same room as the landline so hard to talk openly. I have no dealing with Social Services. I frankly cannot afford to push the Residential Home as if they took his state pension and his private pension I would have nothing to live on. Yes, I would happily work but am 57 and do not drive so would not be able to get a job easily and it would be low paying. I have been a carer officially since Jan 2013 but unofficially for probably 3 years before this. He was drinking nearly a litre of vodka a day back in 2013 when he had the falls and the heamatoma. Also if he has Mental Capacity no way could they get him into a Home.

I do like the Advocate idea if I do end up having to deal with Social Services.
No way would he go into Respite Care and no, they cannot make him if he is considered to have Mental Capapacity.

We have indoor cats so me leaving is not an option. Also I dare not upset him in case he lets them out - they have no road sense and his attitude would be 'oh I am 80 and he/she managed to get past me'. I will walk around on eggshells to protect my cats.

Back in April 2013 I and his then GP asked to have him sectioned but the Mental Health Team who came out did not feel this was necessary although it was borderline. I would say that my life was even more difficult after this - he then was diagnosed with the heamatoma in the July so my feelings that something was very wrong were proven correct as it was an acute on chronic heamaoma on the brain and had been building up for weeks even months.
So I am wary of getting professionals involved. He can be quite convincing although I think most of the regular nurses can see him for what he is.
I just have to try and get through this and yes, it will end up in a crisis.

How much worse is he now than in April 13?
Being Sectioned, is not the end of the world, it means he will get the Care he needs. Whether he likes it or not at the time.
Once the true situation is found, then the correct Care can be found.
Him being aggressive to you, if you are in fear of him hitting you, dial 999 ask for Police. Don't hesitate! (This will work from a mobile in the garden)
Be sure to get an "Incident number" this is the official record, and will be most helpful in SS accessing the situation.
It is now time for his best interests to be done. Whether or not he agrees! Which he will not.

Bod

 

[Krug 22]

Thank you - you have given me a lot of suggestions so I am going to do my best to contact the Admiral nurse helpline and see what suggestions they have re moving forward. I just do not have the money to run the house, keep the cats and pay for Carers and I have more chance of flying to the moon than of getting him to go to a Day Centre.

But if he did go into hospital, I would push for dementia testing to the point of refusing to have him back home. Yes I realise I would need to see my solicitor and get legal advice. I just worry about being in danger if I push the testing... he is very manipulative.

Yes he is much more frail than he was back in 2013 when he weighed 11st7. BTW I am 5ft 5 and weigh 7st so am not exactly a heavyweight! I do get Carers Allowance and he gets the lower rate of Attendance allowance and we had this from Jan 2013.

I have been hoping that the nurses might action the self neglect. I will do my best to tell them again when I see them out, and hopefully it will be documented. They share my frustration. We have a telephone conversation with the Dietician tomorrow so will try and mention how worried I am about dementia - I spoke to the Dietician last year about the lack of appetite/appalling diet and she did say that this quite often happened with dementia. It is almost like anorexia as he watches so many cooker programmes!

 

[TNJJ]

Thank you - you have given me a lot of suggestions so I am going to do my best to contact the Admiral nurse helpline and see what suggestions they have re moving forward. I just do not have the money to run the house, keep the cats and pay for Carers and I have more chance of flying to the moon than of getting him to go to a Day Centre.

But if he did go into hospital, I would push for dementia testing to the point of refusing to have him back home. Yes I realise I would need to see my solicitor and get legal advice. I just worry about being in danger if I push the testing... he is very manipulative.

Yes he is much more frail than he was back in 2013 when he weighed 11st7. BTW I am 5ft 5 and weigh 7st so am not exactly a heavyweight! I do get Carers Allowance and he gets the lower rate of Attendance allowance and we had this from Jan 2013.

I have been hoping that the nurses might action the self neglect. I will do my best to tell them again when I see them out, and hopefully it will be documented. They share my frustration. We have a telephone conversation with the Dietician tomorrow so will try and mention how worried I am about dementia - I spoke to the Dietician last year about the lack of appetite/appalling diet and she did say that this quite often happened with dementia. It is almost like anorexia as he watches so many cooker programmes!

My dad likes the hairy bikers on tv that cook.My father used to just about know where the kitchen was for the kettle.He has never cooked a meal in the whole of his life.

 

[Krug 22]

[Weird isn't it? Husband used to like to cook steaks but I am a vegetarian so struggled with this frankly. He never ate in a conventional way, even when we first got married back in 1990. He would stop working at 5pm, play computer games, then drink then want to cook, if he had not fallen asleep at 9pm. He never ate breakfast or lunch very often - he had lived alone for 9 yeras since the end of his second marriage when we met. I just could not function this way so I started doing my own food. I did try to get him to eat in a more conventional way when we retired and again when he had the heamatoma but just ended up giving up.

We no longer have a gas cooker as he used to let things burn and spill over and guy who did the boiler safety check said it was dangerous - in fairness he had not used it for a couple of years. He does have an electric grill but at the moment, I have it in the cupboard as he is a bit vague about timing and dare not risk him leaving it on in the night. I do have a microwave and a small electric oven. I would heat up ready meals for him but his is not interested. The Dietician says not to bother with conventional means and just to get calories down him but again , this is such a challenge as his fridge now full of fruit that will be binned.

We have the senior District Nurse coming next week for a 'reveiw' so maybe non compliance has been noted. I guess I will be made to feel guilty about him sleeping on sofa but he likes to do this and I have suggested alternatives. I dare not encourage him upstairs as frankly it is my sanctuary and the Saniflow bathroom is so sensitive would be constantly worrying what he might flush down it - he sometimes puts loads of loo paper down the downstairs loo and forgets to flush!

Nurse today did not leave spare dressings.Her attitude seemed to be that he should not have a bath so the dressing stays on and the sores heal. Not sure how I can implement this.
I do have to put his tablets next to him and prompt and prompt. Tried stepping back with just one prompt as he can get quite nasty, but by 3pm morning pills still not taken. Ditto not getting his Fortisip - tried leaving it to get him to walk more, but again, it gets to a certain time and he has not taken his pills....because I have not given him Fortisip.

 

[TNJJ]

[Weird isn't it? Husband used to like to cook steaks but I am a vegetarian so struggled with this frankly. He never ate in a conventional way, even when we first got married back in 1990. He would stop working at 5pm, play computer games, then drink then want to cook, if he had not fallen asleep at 9pm. He never ate breakfast or lunch very often - he had lived alone for 9 yeras since the end of his second marriage when we met. I just could not function this way so I started doing my own food. I did try to get him to eat in a more conventional way when we retired and again when he had the heamatoma but just ended up giving up.

We no longer have a gas cooker as he used to let things burn and spill over and guy who did the boiler safety check said it was dangerous - in fairness he had not used it for a couple of years. He does have an electric grill but at the moment, I have it in the cupboard as he is a bit vague about timing and dare not risk him leaving it on in the night. I do have a microwave and a small electric oven. I would heat up ready meals for him but his is not interested. The Dietician says not to bother with conventional means and just to get calories down him but again , this is such a challenge as his fridge now full of fruit that will be binned.

We have the senior District Nurse coming next week for a 'reveiw' so maybe non compliance has been noted. I guess I will be made to feel guilty about him sleeping on sofa but he likes to do this and I have suggested alternatives. I dare not encourage him upstairs as frankly it is my sanctuary and the Saniflow bathroom is so sensitive would be constantly worrying what he might flush down it - he sometimes puts loads of loo paper down the downstairs loo and forgets to flush!

Nurse today did not leave spare dressings.Her attitude seemed to be that he should not have a bath so the dressing stays on and the sores heal. Not sure how I can implement this.
I do have to put his tablets next to him and prompt and prompt. Tried stepping back with just one prompt as he can get quite nasty, but by 3pm morning pills still not taken. Ditto not getting his Fortisip - tried leaving it to get him to walk more, but again, it gets to a certain time and he has not taken his pills....because I have not given him Fortisip.

Hi.It is weird.Dad was diagnosed in 2016 when he had his first stroke.Dad was walking with a stick then,but would shower without carers .He used to get them to get his breakfast “Give them something to do “was his response when I asked.Now,as he is more disabled (in a wheelchair if not in his recliner)he only gets a shower/bath once a month.He refuses to go to the home more than that.So,in that aspect I have given up.The carers wash him ,but he has a catheter and should have more.But,hey ho!..I also have to prompt him for his drinks and meds.Especially his lactose (he won’t go to the toilet more than twice in 10 days..I’m taking 10days off on the 26th August .I cannot wait.Dad has fluctuating capacity so if he won’t take it,so be it.Given up explaining to him..I’m not sure if you will be able to implement him having a bath/shower if he refuses to.If he is being “non compliant “ then maybe the Senior District Nurse can deal with him.Especially as they have Duty of Care.I don’t mind helping dad but I will only do so much.

 

[Krug 22]

Hi.It is weird.Dad was diagnosed in 2016 when he had his first stroke.Dad was walking with a stick then,but would shower without carers .He used to get them to get his breakfast “Give them something to do “was his response when I asked.Now,as he is more disabled (in a wheelchair if not in his recliner)he only gets a shower/bath once a month.He refuses to go to the home more than that.So,in that aspect I have given up.The carers wash him ,but he has a catheter and should have more.But,hey ho!..I also have to prompt him for his drinks and meds.Especially his lactose (he won’t go to the toilet more than twice in 10 days..I’m taking 10days off on the 26th August .I cannot wait.Dad has fluctuating capacity so if he won’t take it,so be it.Given up explaining to him..I’m not sure if you will be able to implement him having a bath/shower if he refuses to.If he is being “non compliant “ then maybe the Senior District Nurse can deal with him.Especially as they have Duty of Care.I don’t mind helping dad but I will only do so much.