I hope it is ok to have a little rant? We have been having nurses out once even twice a week to deal with husband’s pressure sores/moisture lesions for around 18 months. Generally they are fine but I can feel their frustration re his inability to take advice.
Every couple of months I get someone senior. Yesterday’s lady has upset me. Yes I totally realise husband should sleep in a bed BUT he tends to sleep a lot in the day and stay awake at night attached to the TV via headphones as he is deaf. My upstairs bathroom is a saniflow and no way can I risk him flushing his dressings down the loo, as it is no exageration to see he could bring the ceiling down. I have just paid £1000 to have it replaced.
Yes I was prepared to investigate the hospital bed downstairs but it would mean getting rid of the big old sofa which is very stained due to his 'accident’s and he just won’t let me do this, and buy as smaller second hand one. The bed would need to be attached to a socket and he says this would stop him watching TV easily. So not able to implement this. The front room is literally full of his junk - old TV’s/Viedo’s/printers et al and even an£80 huge printer he got off ebay in the Summer and is stuck in the middle of the floor, as he cannot get it to work. He has no longer got a TV in there as he broke the ariel. He built bookshelves over the radiator so even if I have the central heating on ,it is not warm enough for him. I cannot afford the central heating on much as he has the gas fire on so high. Even the nurses comment on this.
The bottom line is I do not want him in my bedroom as it is my only escape from him and I got to bed at 7.30 just to get away from him. He has toileting issues as he wont’ take the lactulose/picosuflate as instructed so we get explosions. He also won’t do his teeth and his gums are black but he won’t see the hygeniest - we saw the dentist yesterday.
I was made to feel guilty for his ‘non compliance’ yesterday but he has mental capacity. I wont put the cream on his sores on his bottom but do guide and do put the dressings on. I constantly prompt re the lotion for his psoriasis but resent having to get down on my knees, when he is so awkward and I have back problems.
I am struggling also to deal with the conflicting advice the nurses give. One senior nurse said an ordinary bed would not work as he needs a special mattress and a hospital bed yet the one yesterday felt I should get a TV for him upstairs but how would I sleep with the TV on? I would happily try to get him a hospital bed downstairs but is there any point in clearing things out to make space if he wont use it and unless he lets me get rid of the sofa is there any point? We did look at just getting a special mattress for the sofa but then he is at risk of falling off.
He is 80 and I have been his carer now for 7 years. Sorry for the rant. In many ways, I am lucky and I have disengaged due to his non compliance to an extent. I do my best to keep his medicaiton up to date, prompt re the creams and tablets, and run his bath and try to stop him wearing dirty gowns - I put a clean one in his bathroom but he locks me out when he has a bath. Once he has the dirty one back on, I cannot make him physically take it off< I know he is frail but I only weigh 7st and he has lashed out in the past.
I am not going to complain about the Nurses attitude because she is only trying to do the best FOR HIM. But she just has no idea of the reality of living 24/7 with a difficult, non compliant old man! Wish she could spend a week with him and see how SHE coped.
Helena, when you describe your husband, I often question his capacity!
Why not write a letter to the District Nurses office, and ask that anyone new coming to see you reads it first? There you could explain, as you have done to us, just how difficult it is for you, why things are as they are?
End the letter “please realise just how hard it is for me too!”
Thanks for your replies - calmer now. I always find it hard when he insists on coming to the vets with me, as he is quite unsteady on his feet, and my cats in carriers are very heavy - male neuters can weigh 7kg so I am always terrified he will fall and drop one and he/she will escape. I would never forgive him if this happened. I can cope alone as the vet staff and taxi drivers help me. I try to use my friend and pay her taxi fare but her van has been written off so waiting for her to get it back on the road.
Sadly, I do not think I could get out on a regular basis for counselling right now and it is quite expensive - I have looked into it plus I would have to get a taxi.
I have got onto my local Carers Branch to ask for another telephone befriender. Shirley was great but is ill so I was waiting for her to come back but it has been over two months, so have asked for an update. Husband does lie on the sofa near the landline so even then it is hard to be honest.That said, at least I could get support re the pressure sores/bed situation.
I will try to get the name of the head of the District Nurses and the full address BB. I will also write again to his GP. The dietician has been great - she totally understands how hard it is when someone won’t eat but the nurse on Tuesday did make me feel a very poor carer. In fairness, a couple of the nurses have hugged me and said I am doing a good job so probably just being a bit over sensitive. I still do not know how I am supposed to MAKE him put on a clean gown or cream his legs. I only weight 7st and if I try to force him he could even now push me over and isn’t forcing someone ‘carer abuse’?
RE Mental Capacity BB - it is a legal and moral nightmare. My GP says what you and I consider a lack of mental capacity is not considered so by the medical and legal profession. We have to prove my husbands actions are dangerous to him and whilst I think the lack of self care is, the NHS do not agree - it all comes down to cost. Even when he had cellulitus they would not take him into hospital as I was told ‘older people cope better when looked after at home by their relatives’. This caused huge distress for me as my neighbours daughter in law died of Septis and she felt he should be in hospital when she saw his legs. I may go and see my GP but there is little he can do , as my husband is not his patient. I cannot easily get to see his GP although she is very nice, and sees him for what he is, as she is at a different surgery - husband fell out with m y GP when he said he was confused!!!
I have great friends and thank you both for your comments. I am afraid it has been a tough few days.
I often wonder if some medical professionals are in the wrong job? Don’t be afraid to call them out when they are being less than helpful, a firm letter in addition to what BB said about how hard it is for you a gentle I don’t want to have to complain but if you continue to make things more stressful for me I will have to complain and ensure a supportive nurse attends might help too. Besides if you don’t say anything the Nurse will continue with this attitude and it won’t help either you or your husband.
You cannot force him to do anything he does not want to, how would he take persuasion or you could be totally blunt and call it blackmail and would he be bothered if you phrased it so it’s not optional for a hospital bed because if not he’d have to have nurses more often including bathing him if he doesn’t have it? Either way keep refusing him in your room as it’s not on for them to encourage your health to fail.
Can your GP refer you for counselling? I don’t know the area you are in but I know when I was struggling with my dad’s parents who are verbally abusive all the time my GP referred me to a free counselling service. In the meantime whilst your waiting on a befriender I’m happy to chat, either here or message me.
Thanks Sall- very much appreciated. I have tried gentle persuasion, logic, tears but nothing works. He is very set in his ways.
Today he has had a bath run by me, put his dirty dressing gown on, no underpants. He did put the cream on the sores. He won’t let me put the dressing on because he says he may need the loo - not been since Friday last week. Has he had the lactulose he was going to have last night and was one of the reasons we did not go to the pub quiz? No! Is he going to have it now? Later. This is what I am up against all the time. He is sleeping now so will try to prompt again when he wakes up and get him to cream his legs. He is in a dirty gown with open wounds which I totally realise is a huge risk re infections. I really need to get the dressing on but it is impossible right now to do so.
He has not been diagnosed with dementia but there was considerable atrophy when he had a scan after a fall back in 2013, even taking into account his age at the time. He had the heamatoma then so has had no further scans. I frankly think he does have dementia but am not in a position to progress right now as have to live with him 24/7.
I did try NHS counselling back in 2013 but the counselor was very young and said she felt very out of her depth with me. I did vol work at Relate years ago - only as a receptionist, so realise how it works. For me, it would be a safe place to offload but I think I would need to search out a private counselor who had either been a carer herself/himself or who had a special interest in helping carers. I am lucky having a couple of friends who have been carers and they are very good but I do not wish to burden them too much.
I will write to his GP stressing how difficult it can be to get him to co-operate and try to find out the name of the head of the nurses although in fairness, most of them who have been a few times are great. He does sometimes follow me when I see the nurses out which of course, stops me from giving them additional information.
I do get out when I can. I chair a Book Club but he has to come too. I also am a member of Rotary but he comes and moans as he does not like the people who in fairness, are really lovely and a couple of women see him for what he is. I also show my cats occasionally and have a lot of friends in the show world and I always love catching up with them. My neighbour pops in at lunchtime to make sure he is ok. But I do worry about leaving him and get up very early to try and get him bathed as terrified he will put the bath on and sleep and let it overflow.
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.
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.
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.
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.
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.
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
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.
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.