I am caring for my mega difficult much older husband. He is becoming increasingly incontinent. We have waited for 6 months but finally got to speak to a Continence nurse last week. It seems pads are the only option but the GP has asked that my husband send a faecal sample to rule out cancer - not easily when he has diahoria a lot of the time.
The nurses have been visiting for around 2.5 years to try and get on top of his pressure sores. They are not happy about him having a bath as it disturbs the healing. I do apply the dressings the 5 days a week the nurses do not come. I run his bath but I really do not want to clean his bottom throughout the day - surely I cannot be made to do this? I worry dreadfully about the risk of infection as he does not move around much so if he does have an incontinence episode it may be a while before it is picked up. The nurses did write to the GP asking him to phone and make sure that my husband realised he was not helping himself by sleeping in a chair and having baths. I think they wanted to check mental capacity. GP phoned and said it was not his job to get husband to sleep in a bed or not have a bath and he was not going to refer it onwards - maybe to Mental Health? GP did run through a few tests with husband and said he had never heard anyone repeat the months of the year so quickly.
I do agree that husband should sleep in a bed but he wont clear out the front room or let me to it and that really is the only place we could have a hospital bed. I cannot cope with him having one in the spare room partially because he would struggle with the stairs but also the saniflow is very sensitive and if he flushed his pads/dressing down that, it could block it or even bring the ceiling down. He also likes to sleep with his headphones on and the TV and light on.
Next week we have re wiring being carried out safety issue so dare not leave it. Husband refused treatment for his astmha back in 2015, but has started treatment earlier this year. He is coughing so much last night that I had to get up to check he was ok. He is using the two inhalers and indeed, over using them. I did tell one of the nicer nurses this needed to be done, and she suggested respite for him but he would not consider and frankly I would struggle to find the money as the electrics are being done out of money from my Pension Fund which I do not want to use given I am only 59.
So husband has ‘mental capacity’ according to a recent GP phone call. So if he does have a giant attack tomorrow due to the dust, then hopefully I cannot be held liable? I could put him in a hotel for one night but the incontinence would be a real issue. I could not go with him as no way could I share a bed and I do have cats with me - some are going to the cattery today, but others are staying and going into the enclosure when the men arrive.
It does not help that we are at different GP Surgeries. I do feel that the NHS have abandoned my husband to a degree and part of me understands as he is medically non compliant but I feel abandoned too. A friend thought if I did not wash his bottom we would hav eto get and pay for carers but surely this is a medical job given the sores and the bleeding.
Sorry for going on but it is pretty obvious I am going to get no help re the mental capacity from his GP so I guess like many here, I wait for a crisis and hoped I do not get blamed if it happens.
Helena, I’ve read of your many trials and tribulations during my time on this forum: surely it’s now time to tell Social Services that you just can’t do it any longer. you deserve to have your own life.
My wife has just come back from two weeks respite care, it seems it was OK in general, but the catheter maintenance left much to be desired and certainly weren’t to my standards or to the instructions given. It also now transpires that she is four days constipated, (they ran out of Muesli), and has by-passed her catheter in bed during the night, about 800ml in total in the bed, as she doesn’t know its happening, this is almost certainly caused by the constipation as this catheter is only two weeks in situ. It’s less than 24 hours since she came home and I’ve nearly had enough already.
Heart goes out to you Ayay. I totally understand how very hard it is. We have no contact with Social Services as yet. I guess I have to get the re wiring over and then see how things progress but his GP is as useful as a chocolate teapot.
Oh Ayjay, sorry you are having to sort out these things which would have been unnecessary if care home had followed your instructions.
Helena, if husband has capacity he should be cleaning his own bottom! If he can’t physically do it and you don’t want to (understandable) there are two options have a bidet fitted - I have known of these being funded in the past or social care arranging carers. These would not be funded by you, but your husband might have to contribute to the cost.
Good luck with the rewiring, hope it goes as smoothly as possible.
Ajay
Sorry you have problems to sort after your break. Don’t let it put you off another one.
Helena, no you do not have to clean your husband’s bottom! You don’t really have to do anything you don’t want to. You say in other posts that he can get nasty, so why risk it. I would contact social services quickly and explain your situation. Just because he rolled off the months of the year quickly, does not mean he has capacity! To me that’s a cop out.
I do not have much faith in SS or testing for mental capacity, especially without support of his GP Pet. I dare not risk challenging him. If I got them involved, and they believed him not me, then frankly I dare not take that risk. All I can do is hope for a crisis and that the astmha gets worse or he gets an infection and goes into hospital. I do know mental capacity is fluid. I just need to get next week over and see where we go then…
Helena, what do you think he will do?
Maybe this is actually the opportunity you have been waiting for?
Is it worth him getting aggressive so that you can film him and then run?
Maybe with the aid of a covert camera?
You sound really scared of him, it’s Domestic Abuse!
That coupled with the expectation that you should now clean his backside, is all too much.
Alternatively, wait until he has soiled himself and then call an ambulance.
It really is time your suffering was brought to an end.
Thanks BB - I may have to ask a friend to show me how to record on my mobile but if he saw me doing it then this could be a real problem - he is still 2st heavier than me. I would never ask the ambulance service to come out for incontinence as I could be diverting staff from someone who needed them.
I shall get next week over and if his sores get worse then it is up to the nurses to deal with them. Not sure how I will keep him clean if the incontinence continues but again will have to take it day by day. I will back off though and just try and aim him at the shower attachment and bath.
I have little faith in SS or the NHS at the moment. I just have to pray a crisis happens and/or nature takes it course hard as that may sound. Thanks for letting me sound off.
There is no way I can leave the house as I would NEVER leave the cats with him as he may well let them out and then play the 'nice little old man ’ card as in ‘the cats got past me’. If I called the police, they would want ME to leave and I cannot do that.
You only need to collect a possible stool sample no bigger than a size of a walnut.
If your husband suffers from constant diarrhea. I would send what you can collect. As this can still be analysed and will demonstrate to the G.P. there are no firm stool to collect.
Start keeping a diary of toilet episodes etc. And your husbands physically and verbal behaviours you may find a pattern. A diary is a good start and many G.P.'s and social services like this process.
If your husband was registered with the adult team at social services. I feel you would find the support you need to deal with the situation.
Husband 82 - much older and have been married 31 years. Always been very controlling and difficult and prone to threats. I will ask him to put whatever appears in the sample tomorrow. Yes I think the appaling diet does contribute Fortisips and vodka.Today he has had 2 Fortisips, a tin of peaches and vodka. I guess tonight he may have 2 more fortisps. There are fish dishes in his fridge and cheese and fresh rolls. We did have a fab dietician but basically he would not follow her advice. I did try and buy him more fruit such as bananas and apples but they often just rotted. Grapes were an issue as they are poisonous to cats and he would knock them over in the night.
Do you really think I would get any help from SS? I do not want to sound cynical but given his non compliance and ‘mental capacity’ I cannot honestly see how they could help. He would just insist he could manage and would threaten to sue if they insisted on coming in! I cannot easily speak on the phone as the reception upstairs is bad and we live in a very built up area so speaking in the garden has issues re lack of privacy and he can hear what I say on the landline. I was half hoping that the Mental Health Team might get involved…but if GP insists husband has ‘mental capacity’ that is not going to happen is it. There is self neglect though as in lack of cleaning teeth and not taking advice such as the Fybogel which may have helped the diarrhea if he had just given them a chance…but as the GP says he is an adult and he can refuse medical advice. I have no faith in anyone right now.
I just have to put on my ‘big girls pants’ and get through next week. But I will download the assessment. Then wait for a crisis or an infection.
Even if your husband doesn’t want an assessment you can have one.
It’s like anything I suppose until you try you don’t know. I think the way to tackle it … tell you husband you are having an assessment. Because when/if you become ill a care plan will be in place. And social services will implement it in case of an emergency. And if he is determined not to be put in to a respite accommodation. A care plan has to be in place to met his needs in the home. Like wise should you feel it’s now time for a short break/holiday for you. Services have to be explored to keep him in the home while you are away. Or you could take the bull by the horns. And say you are going to have a holiday.
You will be entitled to some financial carers grant by your local authority. This can be administered by the local authority or through a local carers group. Each local authority have differing policies on who manages the scheme.
I do have 17 cats - they are in joint names. When we semi retired we started showing and then breeding although I had to stop as i never let any kittens go. Last litter nearly 4. So holidays are not an option and a sacrifice I happily made. I have to say that I realise having the cats have trapped me BUT I honestly do not think I would be here if it were not for them - they give me the strength to get up another morning. I think I would have sunk into clinical depression had I not had them. I do realise that he controls me totally through my love of the cats but realising this is one step towards freedom. I have just paid over £500 to send 12 to a cattery.TBH my best holiday would be at home if he went into hospital.
Husband is in total denial as in his does not need a carer but he is becoming increasingly deaf and I think people generally realise that he could not manage on his own.
Thank you this is a fab forum and whilst you cannot provide miracles you have helped me get through today when I was really really low and hopefully find a way through. MY GP was not helpful- told me he was amazed that husband was still alive and suggested I write to his GP this was 2 years ago. He did think husband might be sectioned in time though although he had said that if sectioning was applied for an dnot upheld it might make things even more difficult - I do not like what he told me but I do appreciate his honestly as in telling what is likely to happen rather than what SHOULD. This mental Capacity thing allows the NHS to wiggle their way out of situations like this.