Husband won't take medication or do his teeth.

[Krug 22]

My husband has not been diagnosed officially but my father behaved in a similar way last year, and his scan showed considerable atrophy 4 years ago.

I am my 78 year old husbands carer. I am 54. He is very difficult and just living off Fortips despite an excellent dietician whose advice I really tried to implement. He has digestion problems but won't take the fibre sachets. We have been to the GP twice who has been great and explained things such as an internal blockage but husband won't still take the sachets. Tried ribena and putting them on table with cup and water.

I now find he has not been doing his teeth or taking his mouthwash for his infection. His tooth brush is filthy so new one ordered but heavens knows what he has been doing with it or how long it has been going on. He had a mouth infection and his breath stinks. I have been reminding him to do his teeth and use his mouthwash, but he has always been a very controlling man and frankly he has been abusive so I can only push so far.

Most days he just lies on the sofa in a dressing gown, He sleeps on the sofa but goes to bed at 6am when I get up. I do not feel I can leave him for long. He has a frozen shoulder and is in a lot of pain. He locks the bathroom door and I am very worried he will fall. I am trying to use my pension pot due soon to organise a new bathroom for him downstairs but he won't consider a shower.

Neither of us have any quality of life. I just want to leave frankly. I have done this for 4 years officially but more like 7. He has burnt every pan in the house when he cooked by leaving ring on and falling asleep and sleeping through timer- He is very deaf but won't wear his hearing aid. I have tried to help but he just gets nasty. the cooker oven won't work as he has burnt things again and again. But he has a microwave of his own and a halygon cooker so if he wants to cook he can. Leaving is not an option as I rely on his state and private pension. I could look for a job but need to do vol work and a computer course to make me employable and also, it is hard to leave the house.

The abuse over the years has been hard. For example just before he had the heamotoma he actually would leave the key in the lock when I went to pilates so I had to beg to get back in my own home. I did threaten to call the police but he said that they would not believe me as he would say I was having delusions and he would have me sectioned as he was educated and I was not, so they would never believe me. In fairness, this has not happened for several years but it has been very damaging but I do now feel he has gone downhill and I would be believed. He is also a hoarder and won't let me tidy the front room - full of printers and computers and i I struggle to hoover without seriously damaging my back. He has said he will call the police if I dispose of his property and have me arrested. He also said he would chase our indoor cats down to the road, but in fairness he has not said this for several years and this is why I do not leave the house for long.

I have not had a Carers Assessment as I am frightened of my husband who is in denial re the possible dementia. But I do think it will get to crisis point and my husband will be hospitalised. I realise that some of this is due to the illness but I am actually very angry with my husband although I also feel pity. But it is so hard to try to take care of someone who won't co-operate and I just do not know what to do. I could see his GP maybe but we have different surgeries - husband threatened to sue my GP when they feel out. But I do know the 'mental capacity' thing is a nightmare in the NHS and I do feel my husband could convince people he still has it, and maybe he does some of the time.

Just wondered how others cope? Not on Anti depressants but wonder if they would help get me through this.

Thanks for reading> I do sound selfish but feel I am banging my head against a brick wall and husband is a car crash waiting to happen had same feelings with my late father last year. We have been married 26 years and it was only really when he retired that things became difficult as I was still young and did not want to spend my days watching TV. He resented my vol work for the National Trust. I do know that husband is in a lot of pain and lashss out at me verbally as he has no friends and no family. There has been no physical abuse and he is quite frail so not worried about that.

I wonder if it is worth writing a letter to the GP and maybe seeing my GP just to explain how difficult I am finding trying to look after my husband.

 

[Morty]

You are not selfish,you need a break,please contact carers association etc
Mabey a week in restbite for him if possible or 2 weeks
Apply for homehelp etc also
Dont try anti depressents yet,you need a break from him and the house
Well done for your dedication so far.

 

[Grannie G]

Hello Krug

You cannot be expected to live like this indefinitely. It sounds like emotional torture. Please seek advice, either from AgeUK , Admiral Nurses or the National Dementia helpline.

AGEUK 0800 169 65 65.

Admiral Nurses [ specifically for carers ] Dementia Helpline: 0800 888 6678

National Dementia Helpline 0300 222 1122 or by email at helpline@alzheimers.org.uk.

 

[Krug 22]

Thanks I will give the numbers a ring and see if they can suggest a way forward. My local Carers Association have been very good and I had a great befriender. She tried to help me clear the front room and we worked out that if we could ask husband to put stickers on things he had checked and did not work he might let me dispose of them. Fat chance. Friend was very good and suggested she bring her van and we would take them to the skip. But he just said I could clean it out when he was dead and if I progressed, he would have my friend and I arrested and also burn my clothes. Sadly the lady left the area but I do have a new befriender do to call and shall see if they can suggest anything.

The one thing I cling on to is that this cannot go on forever and some sort of crisis will happen at some stage. I do think husband realises something is wrong with him and the only way he can cope with this is to bully me to the point where I did doubt my sanity - I do not now! I am in a stronger position than I was 4 years ago but I do know having been through it with my father, that the whole 'mental capacity thing' is a nightmare. Being told that 'no one would believe me' was hard but he is very educated and I only have A levels but I honestly think I am getting to know how the system works a little more now.

Thanks for replying - it means a lot.

 

[HillyBilly]

You are most definitely NOT selfish.

I think you do need to advise your GPs of the reality of your situation. I'm not sure that anti-depressants are your answer though. In the short term it sounds as if your husband might benefit from a GP assessment re his pain? Can you get him to the GP for this, and write in advance what your underlying concerns and problems are? Somehow you need to try and get as many outside forces on board and aware of things. You cannot be forced to care for your OH but it's going to be hard if there's no diagnosis, no assessments. I do hope that others here can advise.

Your financial situation - is this something CAB could advise on? There is Attendance Allowance and, linked to that, Carer's Allowance. It's not much but it would get you "in the system" with a bit of financial help.

You've had to cope with so much, what with your father and now this.

 

[Shedrech]

hi Krug22
what an incredibly tough situation
I hope you are contacting the various helplines as I write
I'm adding this link too
http://www.refuge.org.uk/
please don't use YOUR pension pot to pay for alterations to the house; if they are needed by your husband the cost should come from his separate savings - you need your money for yourself, if not now, then in the future
as for education - seems that's a mantra that's been used against you - anyone who has A levels is educated to a high standard; shows you would have coped with higher education had you been able to go - your post is clear and thoughtful; you are an intelligent and resourceful woman; you have kept yourself together all these years - and you are even now considering further training - my hat goes off to you
just wondering whether the bathroom lock could accidentally be broken; if this wouldn't cause a reaction of aggression towards you - though any door can be smashed through in an emergency
it might serve a purpose to walk out; your husband clearly cannot cope on his own and his aggression etc evidence that he knows that and resents it - so there would be a crisis and probably pretty quickly - however, when he goes into a care home and you are still living there, the house is yours to live in as it will be disregarded in any financial assessment of HIS finances - his savings and income would be taken into account - if he is at least partly funded by the LA, his state pension, Attendance Allowance etc would be used toward paying the fees; half of his personal pension will come to you - I believe there's scope to make sure that you can cope financially; something to check with the LA
so maybe consider going away for a holiday; having let his GP and SS know that he will be on his own and is a 'vulnerable adult at risk for whom they have a duty of care' - if your funds are low would a friend have a room for you, or contact a refuge - hopefully a crisis will occur while you are away
create a log of a typical day for your husband then send this to his GP giving every little detail of your husband's behaviour and your concerns, especially his aggression and that he will not co-operate or follow advice and shuts you down by saying no-one will believe you (TP members DO) - maybe just print out your posts! - tell his GP that you are close to carer breakdown and ask that your husband be referred to a consultant and to SS- do the same for your GP, so they know the whole picture
over the years your husband seems to have hidden his inadequacies behind bluster and threats eg saying he will sue the GP; let him threaten and let whoever he threatens deal with it; it's more evidence of your husband's instability
if he threatens you, call the police and let them know the history to explain why you called them, as threats have previously been followed through
sorry if this reads a bossy tirade - just thinking what I might do and writing it down
you're amazing to come here and be so brutally honest
let us know how you get on
very best wishes

 

[Krug 22]

Thanks for your replies. I have actually had Carers Allowance since 2013 and husband has Attendance Allowance following his heamatoma and other medical problems, psorasis/lupus/deafness/ heart problems.
I do not have a Social Worker so maybe that would be a way forward.
Sadly getting away is impossible. I breed pedigree cats very occasionally and have well into double figures. No way could I leave them.
Our savings are very small and in joint names. My pension lump sum is in just my name.
I basically want to make the house as low maintainance as possible so that is why I am prepared to spend some money on it.. I am struggling with the garden and having top lawn paved means I can extend my cat enclosure.
I do agree that we really need a diagnosis if it is dementia but trying to get husband to go down that route is just not going to happen voluntarily.
I will contact the numbers given and see if there are any other options. I think basically that all I can do is keep notes and try and get to see my GP and ideally husbands. the deafness is a huge problem and although I prompt husband to do his teeth yesterday, all he heard was 'feet', and I ended up screaming TEGS and pointing at my teeth. I do remember with my late father him insisting he had done his teeth when the carers said he had not as they had checked sink. I also know that the mouthwash for the infection is not going down.
I am doing my best to take care of him but it is so very hard.
I suppose my confidence has been so battered over the last few years, I am actually brainwashed into doubting my own instincts and also worrying that i will not be believed. Husband has also convinced me at times that I am exadgerating and he is right, I have no medical knowledge. I know that whilst he has 'mental capacity' the GP is not going to be able to intervene without his co-operation. Frankly I think calling me stupid and bullying me is a sign of a very frightened old man - deep down he knows he is not 'right'.
Thanks for letting me vent - very grateful.

 

[cuppatea]

Hi there and well done for all you are doing and keeping yourself strong. This is my first post and what you say rings many bells. My husband has dementia and is also a very aggressive controlling man. I am lucky with many friends who know what he is like and offer support but they are not here in the house 24/7. Hope the helplines offer some practical solutions not sure what to add to the above. I recognise the way he is undermining you all the time by saying you are not educated - what rubbish you clearly are literate and thoughtful and well able to express yourself and reason things out. You are in an impossible situation hope someone can help. Keep strong and keep in touch.

 

[Krug 22]

Thanks Flossie - sorry you are in a similar situation. I do realise that since he had the heamatoma, I am much more likely to be believed. I am waiting for my Carer Befriender to get in touch. I am keeping notes so when I go to my GP I will be able to rationally tell him my concerns and get them on file. Not sure if Adult Social Care would make things worse right now but it is an option...only problem is not sure husband would accept help and he can still at times, be very convincing.
But yes, I do think it will get to Crisis Point and then hopefully we can move forward. If he did have to go into hospital, I would do my very best to push the dementia testing.
So just waiting. I have not managed to get the Admiral Nurses yet but will keep on trying.
I wish you all the best Flossie. Keep posting as what you are going through is so very isolating and lonely but the understanding and empathy here is fantastic.

 

[philamillan]

Based on the information given it seems to be wise to get advice from your GP.

The behaviour change may be related to early dementia but it is very important to exclude depression as a likely factor in his behaviour. If the GP is unable to influence him then Community Mental Health services would be useful. They will come to the house to assess the issues with both of you.

In the end you cannot afford to burn yourself out by not seeking support. The carer often needs just as much help as the patient.

 

[Krug 22]

I have managed to get an appointment for husband with the GP we saw before - had not realised he was a locum. Husband's surgery has amalgamated and his old GP no longer seems to be around. We are only supposed to talk about one problem but I will see if I can introduce the not taking sachets as the risk of an impaction is a huge worry and also mention the lack of appetite/and not just living off the Fortisips.

We are going to discuss the x ray for his arm pain and hopefully to arrange steroid injections. If we can reduce the pain in the arm, it may be easier to deal with him.

New electric toothbrush purchased and on charge but not used. Have tried gentle prompting but will try again tomorrow.

On a brighter note, we have been accepted by our local Rotary. Not sure how much husband will be able to contribute but we can at least go to the weekly dinner and I will hopefully make new friends. It is very local and only a quick taxi ride. I also have my Book Club. The Befriender from Carers was very good but unfortunately husband around so just concentrated on talking about trying to get the best from the NHS re the pain in husbands shoulder/arm. We still do not really know what has caused the loss of appetite, but GP and dietician are aware. Indeed, GP even said that he was amazed husband was allowed on Fortisips for so long but the bottom line was his weight was 7st 10 before he took them and now it is around 8st 10.

So thank you. I do feel I can see a way forward. Will get GP appointment over and then think about seeing my GP and explaining what a struggle it feels at times. But I do have good friends and I think I have to swallow my pride and ask for help and support. I really appreciate your comments and it has helped me move on and start to look at options for making MY life easier.

 

[HillyBilly]

Wow, well done! I hope all goes well.
Why are you only supposed to discuss one problem at your GP appointment?!

 

[Moonflower]

I think if you have multiple/complex problems you can request a double appointment at the gp

 

[Krug 22]

Yes I should have asked for a double app but it is so very very difficult to get an appointment at all at the moment and I wanted to see GP who had ordered the x rays.

Supposed to phone at 8am but then they can say they want to see husband that morning and trying to get him up and dressed and bathed quickly is hard. But it is a start and I will at least see if GP open to discuss the lack of appetite/taste in mouth, and not taking the sachets.

I have also booked dentist for 16th so if he has an infection in the mouth at least we will be aware of it and maybe knowing he is going to a dentist will be enough to prompt him to do his teeth.