Not sure if anyone can help. My 84 year old husband has bronchiestatis and maybe other lung conditions. He also has Acid Reflux and this can result in lung infections if the food gets into his lungs - the specialist told him this.
However he has now decided NOT to use the spacer but to squirt the Fortistair and the Ventolin directly into his mouth. He is very stubborn and can be verbally abusive so I am limited to what I can say and I do keep getting told I have no medical qualifications. I know this is not ideal but is it likely to be dangerous? We are at different GP Surgeries so I have no easy way of asking his GP. His coughing is quite bad at the moment.
He also has a mouth \tooth infection but would not take the prescribed antibiotics as he was not allowed to drink alcohol when on them. I am starting to wonder if maybe this has spread to his lungs as for the last 24 hours the coughing has been quite bad. My husband is medically non compliant but I do not want to be accused of neglect. I am very frightened of him because he is much heavier than I am as I weigh around 7st. He has been prescribed steroids and this has given him much more mobility.
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Leonora1961
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Hello Leonora and welcome to the forum. I’m so sorry to hear of your husbands health problems and his reluctance to take his medication in the correct way. The spacer, when used correctly, gets the meds deep into the lung to make sure they work. I don’t know that it’s dangerous not to use the spacer but it means the medication may not work as well as it could.
It sounds as if you are finding things very difficult so try and get help from your husbands GP or even your own as you need help. Take care xxxx
Hi. You have a problem that needs solving. First I take Fortistair and Ventolin. To be honest I don't use my spacer for my Fortistair - I use my inhaler properly and I don't want to risk palpitations with the spacer.
To be honest being he is abusive, I would stop trying to make him use his spacer, I don't think he will.
I think due to his age you have one option - Ring his GP and tell them he a won't use his spacer - I doubt they will try and force him but, you would be better telling them.
I think you could well tell his Doctors about the infection, than could turn nasty. - tell then to please sort this.
He sounds ill with his cough worstening - I think he may well need to be seen, if not you need to know what to do, and also you need some Antibiotics for his infection that if they will agree, is compatible with alcohol/
As Sassy says - Not luck with his doctor, as you nee help, see yours for advice.
Welcome to the forum Leonora1961.im sure u will find it a gd support network. Im so sorry yr frightened of hubby.i hope u can stay safe,do ring 999if u need help.As for husband,if he chooses to be non compliant with treatment,thats his choice
Sounds like your in a difficult situation, bless you, firstly you shouldn’t put yourself in a place of danger, probably easier said than done! And secondly….if he chooses not to take his meds ….then that’s his bag…
Are you registered as a carer at your GP….. it’s a form that you get from them …so they can register it to your notes … then you can access more support from them , you can register with your local council as a carer and they can give you support too .
I hope you have friends snd other family around to support you
Thank you for your replies. Yes I am 61 years old and have been husband's carer for 10 years - we have been married for 34 years. I have no family to help nor has he, and we have few friends given his 'personality'. He apparently does NOT have dementia as he passed the memory test at the Memory Clinic in May but I frankly have my doubts as to me, he presents some symptons. Leaving is not an option for financial reasons plus I have my beloved cats. I guess all I can do is 'disengage' re the inhalers once I have done the initial prompting. I do get Carers Allowance. I cannot easily get to speak to his GP and I am constantly told that he will divorce me and I will lose my home and cats if I do not 'toe the line'. He has several co morbidities so digging deep to find compassion but I guess the bottom line is that he has mental capacity so little I can do. I have no faith in the police as it is very hard to prove verbal abuse and he is much too clever to use physical abuse.
You have a lot on your plate. He is not very well at all but it can be very hard going being a carer . Steroids can sometimes make people aggressive . You must try and look after yourself and can only do your best. Lets hope he can get on top of his infection and maybe things might ease a bit. Some excellent advice from others here. Sending a hug. xx
so sorry to hear how tough things are Leonora. Many on the group already giving you best advice on the medical / inhaler issues. However, it sounds like you need to register your concerns for yourself in the right places to ensure your personal protection. I think I’m right in saying your local authority would have a safeguarding team. I would recommend you contact them for advice .
If your husband is bullying you and threatening you it is imperative you have made this known for your protection.
I hope you manage to navigate this very difficult period and find inner strength as you need it .
this is an example for one area - each area should have a safeguarding for adults team. Please find the one local to you and contact them . Best wishes
Helen
Info on safeguarding adults
Dear Leonora, Your husband is an an adult male who is non compliant when it comes to taking his medication. This is his choice. He is also a domestic abuser which is now a criminal offence. I really do not know how you have been persuaded that you would be accused of neglect because of his refusal to comply which he compounds with abusive behaviour towards you. He is not your responsibily.
You do, however, have a duty of care towards yourself. Detach yourself from involvement with his medical care and leave him to it and take steps to make yourself safe. This man has browbeaten you so much that you cannot see what is best for yourself.
Oh wow littlepom you're still with us, let me tell you we've had the search party out looking and some very worried posters up in the lampposts!! Great to hear from you glad you're ok xxx
Thankyou. I have been at home for a week..I am very breathless and weak amd just praying that my lung doesn't go down again. When I can gather myself I will tell all
Hi Leonora, sorry you have so much to put up with, I imagine you making yourself ill if this carries on. I don't believe it is dangerous not to use the spacer while taking meds so would let him carry on the way he wants to do it. You are in a awful predicament and would definitely carry on using this site as everyone here is so lovely and will help you if they can. 😉
Welcome to the forum, Leonora. I hope we can offer you lots of moral support. First, you are the good guy and your husband is the bad guy. As Littlepom says you have been bullied so much that you cannot think straight. I would see your own doctor and explain the situation to him/her. You, their patient, have been subjected to mental abuse and threatened with physical abuse -you are at risk. After that, if your doctor agrees, you could try writing to your husband's surgery- they should know what's going on. Social services should offer you support-though they are very overstretched in most areas, I fear. You could try the Cits' Advice Bureau. They would know what help is available in your area. I expect you have already worked out that you can't do much of this in the house. The library is a good place for letter writing. Best wishes. I hope you can get yourself out of this toxic situation.
Hi, I have acid reflux and it’s not getting food in the lungs that’s the problem, in my case it’s the stomach gasses which get into n the lungs and cause me to cough, Gaviscon helped a great deal but in now on Omeprazole which has fixed the problem. Without a space you only get 20% of an inhaler dose in the lungs, with a spacer you get 80% of the dose, not using a spacer won’t hurt him but he won’t get the full benefit
Wow! Where to start. Please remember most of us on this site are not health professionals, we can only go on personal experience, more detailed info requires specialist advice. The two problems concerning you at the moment are quite different but one, the reflux, does affect the other. I`ve been taking Pantoprazol for reflux for last 8 years and difference is very noticeable. Re the Brochiectasis, my wife takes Azithromycin 3x per week. Azithro is an antibiotic but it also works as an anti-inflammatory, unlike most anti-bios. Bronchiectasis really does require a lung specialist who knows what they are talking about. I`ll try to end on a more +ve not. Re the non-compliance, if all else fails then a good old fashioned rolling pin has been known to be effective. Take care, stay safe, Chris.
Hi, Leonora1961. You are in a challenging situation, similar to the one I was in during the late 1990s with my previous husband, who died in 2003 of heart failure and had a form of aggressive dementia caused from previous alcohol abuse and decades of smoking causing severe COPD. I went to Al-Anon for support. They are people who are relatives and friends of people with alcohol issues, and use a program and mutual support to help each other cope.
When your husband chooses not to take the antibiotics that would help him get better because he cannot drink alcohol with them, it shows that he has a problem with alcohol, so you would be eligible to join such a group. To find out more, visit al-anonuk.org.uk/
My goodness, what an awful position to be in. I'm more concerned about you than I am about your husband.
I take it he has always been a bully and so it's not necessarily connected to his medical conditions. However, he may be feeling powerless as a result of them which could make his 'need' to bully you much worse.
I think it could be helpful for you to speak to your GP on your own behalf to see if you can access some support for yourself.
Your husband is a grown up and is deemed to be mentally capable so how he decides to take his medication is up to him. It must be incredibly frustrating for you to witness him taking it in the least helpful way but if that is his choice, I don't think there's much you can do.
You said you don't have friends because of your husband's behaviour. Can you join a social group of some kind on your own? It would be good to try and build up a friendship group. You don't need to tell them about your husband - go along and enjoy some time away from him. A break would do you good. A carers group might be helpful but there are other groups around. Your local library will probably be able to show you a list.
Some people find that church groups can be supportive.
If you haven't been able to access groups in the past eg because of working, now might be the time to explore what's out there. You're still a relatively young person with years ahead of you. Now is the time to do something for yourself.
You briefly mention alcohol and I see that one of our regulars has also picked up on this. I feel that you need more support but am at a loss to suggest what agency would be the best one to help you. See your own GP and tell them of your very real fears for yourself. I wish you all the best.
Yes my husband drank a litre of vodka a day for many years but has cut down now. I do not drive and getting out alone is very hard right now. I just have to 'disengage. ' I totally 'get' 'coercive control' is a crime but has anyone looked at the conviction rate? It is so hard to prove. I spoke to a solicitor 3 years ago and her advice, given the cats and limited assets was to 'wait it out' given the age difference. I do not think he would physically hurt me although he is much more mobile now on the steroids. I do not think he would actually go for a 'divorce' but he knows the thought of having the cats pts ( a lot are elderly- we used to show and breed in happier times) is enough to make me 'obey' but he has little comprehension of the hatred that I am now feeling and how it is starting to erode the compassion.
It is almost impossible to get a face to face with my GP as we are in an area of a huge amount of new building and I have a telephone app to discuss my last blood test late August. ( I have a low thyroid and think given how ill I have been feeling that my medication needs increasing).
Thanks everyone . Yes I do have friends but getting to see them is not easy although a couple email which helps. I also chair a Book Club but husband has to come everywhere with me and I also go to a pub quiz once a month. He is very deaf . I will back off re the constant prompting because as several of you have said, he is an adult. Financially things are tough because Brexit, Covid and Ukraine have really affected our pension schemes even though we tried our best to save for our later years.
I have been in your situation and I can see you have a good mindset on what can and cannot be put in action. Very glad to read you do not think he would pysically hurt. Lets hope these infections can be brought under control and steroids lowered too. Keep as social as you can in all the ways you describe. Looks after yourself, if he will not take meds or in the wrong way that is out of your control. I hope you cats give you both some comfort. I pray better times will come your way in the future. stay in touch. xx
Oh goodness I really do feel for you Leonora1961, what a lot you have to deal with.
It shows that you have a lot of common sense - unlike your partner (I'd say more on that but the rules here are that we can't name & shame, be judgemental or give medical advice. We're patients here with a wealth of knowledge learnt over years of different lung conditions. Following is my experience.......
For a start, when a spacer is used we're told (by the professionals) that we get 50% MORE of the medication the inhaler gives out, it's the reason spacers are prescribed & used.
Secondly, we're to wait 30 seconds between each puff if using the MDI spray type (Metered Dose Inhaler). I believe that's written on the leaflets. It's most important to use any inhaler correctly.
Thirdly , my experience of infection close to the bone my sister (infection ate into her jaw bone requiring bone graft and very expensive front teeth implants cost over £12,000 ten years ago). This year my 18 month old g'daughter a few weeks after 8 hour scull op developed an infection under her forehead, another 6 hour op to clear out the pus, then 6 weeks of intravenous antibiotics. There's a hole plus severe thinning of forehead, she now has to wear a special helmet for a year, if the bone doesn't regrow she'll have to have reconstructive surgery).
Fourthly you're right, we can inhale food particles when coughing whilst eating. If the particles remain in airways they can become infected (I trained people to care for patients with MND).
Fifthly, anyone is likely to get a secondary infection when resistance is already low.
Finally, trust your intuition, you obviously have a lot. I doubt anyone could accuse you of neglect especially when you try so hard to care for him & doing you're very best, he's an adult who makes his own choices.
I would tell his medics exactly what you've told us, they should be supporting him (and you), also tell your own GP.
There is a helpline here you can call 9-5, Mon-Fri. Wishing you the best , P
Hi good day i am 59 years old had bad copd 2013 rushed in to local hospital fighting for my life got a tracky in knecked on ebuliser 4 times a day i never heard about a spacer untill a week ago to be honest p perfer not use it i feel i can do it better with out solbutmol 200 i on / but doctor told me to use it also reflux tablet / all the best ghoust rider
oh jeez…you poor darling! As everyone is saying “we get it”. I must say I’ve noticed a change in my husband’s personality now he takes so much steroids. First and foremost is your welfare in this. If he won’t take care for himself there’s not much you can do. You have to disengage, it’s not your responsibility. Write it to his and yours gp by e mail headed up please put this before GP. It’s their duty to act. No one can separate you from your precious pussies. In addition if you finally decide to live elsewhere the law is now changing so landlords can no longer ban pets. Keep us posted, We are here for you. wishing you love and strength xx
Hi! I’m so sorry you are having these problems with your Husband. I was on Fostair and I did use a spacer but it made my tongue very sore and I couldn’t eat certain foods. If he carries on using it like he is he may end up with a sore tongue. I think you will find the steroids are making your Husband cross. They are known to be mood changers. Hopefully it’s only short term. If he’s not complying with you I would leave him to it. You’ve told him and that’s all you can do. Good luck and I hope it sorts out for you.
Hi Leonora 🙋♀️Can't add much more than what the others have said but just wanted to welcome you to this lovely forum. You will find lots of support and friendly chats here. I really hope you get some help with your situation soon. Take care 🙂xxx
Hi Leonora and welcome to the site. You have been given alot of good advice on your situation. I will say that if your husband refuses to listen and take his meds then that is upto him, he is a grown man . My ex was an alcoholic so have an idea what you are going through, although he was not a bully in any way. I think you should get help to deal with this as its not good for your health x
ps As a lawyer I can tell you after 34 years of marriage you are entitled to half of everything you two have. No court would evict you. Your house is as much yours as his. So his horrible threats of hurting you and your beloved cats are just hot air.
yes totally agree with battison. The house is a much yours as his, it doesn’t matter who purchased it. It’s the law. Get help and advice, take the advice and use it.
exactly that! You are totally in control Leonora even if it doesn’t feel like it. You are so kind to care for him: but you can separate yourself from his madness.
morning Leonora. I do feel for you. What a situation to be in. Leave your husband to take or not take his meds as he wants. He is an adult. I do believe that alcohol affects the personality and it seems your husband is drinking a lot of vodka on a daily basis. I would urge you to get as much support as you can. Talk to your doctor. Please come and talk to us on here and vent frustrations. Take care friend 🤗🤗🤗🤗🤗
I wouldn’t worry too much about the spacer.But the tooth infection without taking the antibiotics could be very dangerous. Maybe have a word with gp as some antibiotics don’t state no alcohol. He maybe needs some of them.
Hello Leonora…. I’m sorry you’re going through such a tough time. As others have said the spacer has a function, not only to get the drug deeper into the lungs but it also avoids the drug touching the tongue and so helps to avoid Thrush etc. as he is abusive towards you and non compliant I would not push the point any more. He’s a grown man and if he wants to behave like this then I wouldn’t say anything further, it’s his choice let him make it. You have done your best to help him so you know you’ve fulfilled your duty…..Best wishes
My heart goes out to you. Everyone can be really difficult as they age and become deply set in their way. Now first there is no actual risk in taking inhalers without a spacer. It is simply however not as efficient in getting the medication to where it is needed.
However one thing can occur and that is that if any of his inhalers include steroid (and I think one may) this can lead to problems in the gums and soft palette which can lead to the infection you refer to.
It is highly unlikely that any gastric reflux will actually enter the lungs but one of the causes of bronchiectasis (I have it) is the effect of the acids in your gastric juices damaging the lining of the bronchi (airways).
Is he on Lansoprazole? This is a daily tablet that reduces gastric reflux. It works so tell him someone (a bloke!) who take it said so!
Bad news is that the cough is a major symptom of the bronch; I am lucky that I do not have much of a cough because as it happen the emphsema I also have is the 'dry' variety.
Now a suggestion if this has not happened - try to get hium to se a repriratory spoecialists and under the care of your local COPD team. I am and have been for 12 years and they are brilliant. And unlike our willing but unspecialised General practitioner they know the things I need them to know.
And, as ever, I am not a clinician notrmedically qualified. I am a seriously ill person who believes knowledge is important. But check everything I say with a clinician. Please.
Thanks for all of your responses. BTW we have 15 cats all neutered now and the eldest are 15 impossible to re home. The youngest are 6. I thought husband loved the cats but apparently he hates me more than he loves them. He really is behaving like a senile toddler at times.
Timberman husband is actually on panterprozole plus Gaviscon for the Reflux. He had a choking episode back in October and GP sent him to a Speech Therapist . But he wont take the Gaviscon as prescribed.
My GP Surgery does not have a Social Prescriber - my local Carers Branch did look into this as an option. But tbh it is not easy to get out.
Thanks for your replies - I will disengage as at least I know that not using a spacer, whilst not ideal, does not appear to be dangerous and he is not actually overdosing on the Ventolin.
I doubt he would get a solicitor to take him on frankly as he is very deaf plus I am in charge of the finances although the credit cards are all in his name but I have my own card on his account. He does not have a working mobile phone either. I think he is just a bully who is jealous and bitter that I have friends. But I remain frightened of him and the mental abuse has been horrific. I will do my best to keep try and get him to take the medication but agree with the comments that I can only go so far. His Surgery have been very good but it took every ounce of courage I had to write and ask them to refer him to the Memory Clinic yet he did very well in the memory test and was discharged even though the scan showed moderate frontal brain shrinkage. I have little trust in the NHS as the lack of self care to me screams of dementia.
Hi Leonora, I really feel for you, such a horrible situation you're in. Nobody should be feeling frightened the way you do in your own home.
Essentially, my thoughts/advice: Look after you, focus on your health and wellbeing, you are being bullied and it's cohesive control (as you have said). Ultimately, your husband's health/non-compliance with his medication etc. is his responsibility. Not yours. Certainly not neglect on your part!!
How about just trying for a couple of days to just let him get on with it re his meds, say nothing, do nothing (don't nag 🙂 don't worry), see how he reacts......it may just be that he's using non-compliance as a way of asserting some control / attention seeking, trying to make you worry and feel guilty????
You have far more rights, and he has much less power than you (have been led to) believe. It's 2023 not the Victorian times!
There's an organization, Hourglass: Safer Aging, Stop Abuse. wearehourglass.org/abuse They have 24hr helpline 0808 808 8141
Helped one of my mum's friends with a similar issue.
Stay strong & keep us updated....this is a lovely supportive site, J xx
As he is being abusive towards you let him get on with it . His dr would of told him how inportant his spacer is and taking antibiotics if he wont listen to his Dr or you it realy is up to him. Maybe a trip to hospital will set him straight. But you should NOT put up with his abuse just because he wont listen and dosent like to be told.
Ps the spacer makes a big differance with spacer 90% of medication hits the lungs without a spacer only 10% hits the lungs meaning you will need to use so much more of relever and long acting dilaters are only about 10% efective please use a spacer it makes a differance
I know Corriena and he has had meetings with the specialist nurses. He is also under a specialist at Glenfield but they seem to be doing everything by telephone which frankly is not ideal as he is quite deaf and it is a struggle even with speaker phone, as some medics have very strong accents and he does struggle. I do usually ask them to speak a little more slowly and in fairness, most have been very good with him. He did have a Pulmonary Embolism and pneumonia around 3 years ago but virtually discharged himself telling staff his much younger wife WANTED to look after him but no one asked me what I wanted. He also had to go into hospital in April for diahorria and still not sure if we are dealing with colitis or not - discharge notes say consultant will get back to us but nothing so far and he was on a drip for 4 nights and again more or less discharged himself. I do feel sad for him but trying to care for someone so medically non compliant is so hard and I have been trying to do this for 10 and a half years officially but probably a good year or so longer in practice.
You sound like a very empathetic person who wants to help your husband. In my opinion he is taking advantage of you. It will be hard for you, but, this is HIS disease and HIS responsibility!
Has your husband always been verbally abusive? This, you do need to talk to his GP about and also your own. Also, that he is medically non-compliant, as then there is no way that you would be held responsible for neglecting him. I know that you are asking questions about his medications and thinking of his welfare, but it seems to me that you need to think of your own welfare as well. Has he always been this way? Otherwise, it might be possible that the steroids are causing changes in his moods. Maybe they need to be adjusted! Sorry, but I can't help with the medical questions that you asked!
look after yourself Leonora. I’m not sure you can do anything if your husband is stubborn. If you feel unsafe please contact womensaid.org.uk. Take care
Wow... I have read all the replies you have had. What a nightmare. Particularly I was interested about the legal advice. You are in a very strong position to live safely, financially securely, on your own, with all the cats. But after all the years of abuse, control and coercion. he has so sapped your independence and confidence that it is very hard for you to see what you must do. He has made his choices, he must face the facts and live with the consequences.
Welcome to this forum, it is very friendly, caring and supportive. I hope we can give you the courage to look after yourself. If a friend confided in you about a similar situation that she was in what would you advise? Listen to your answer and follow it.
Hi Leonora1961 - your husband's behaviour towards you is coercive control as you note above. As GinnyMa says, his condition is his responsibility. He is using you as a doormat and if you want it to end you need to be clear and stop taking responsibility yourself. Coercive control is very insidious - it can build up then before you know it, you can find yourself enmeshed by it. One of the standard ways of exerting it is to try to separate partners from their family/friends etc. But your friends are a potential means of support here.
What would it take to break away from him? I don't mean separating, but just being a separate person with your own agency within the relationship, e.g. stop making calls for him, let him get on with it himself. If he asks for help in a decent way then fine, otherwise could you manage not to engage? You say he threatens divorce if you dont comply with his wishes yet he is dependent on you. How about telling him you won't comply unless he changes his behaviour? This can't be a one way street. You could start - or threaten to start - divorce proceedings just as much as he can but he doesnt seem to realise that. However you do it, it is time to take back control. Keep in touch and we will all be supporting you. Good luck!
Hi I understand what what you're going through my dad he was stubborn didn't belive in docters he thought they were meddling quacks my dad had never being to his docters since he was 8 years old he always treated himself at the age off off 63 he got asthma and emphisima he wouldn't do what he should off I was trying to talk to him he wouldn't listen so I went to his doc and explained that I wanted ta see his doc they made appointment for me I explained situation my dad's docter were not my docters but they made appointment but I had ta explain how my dad viewed things his way or no way his doc agreed ta do home vist but on the agreement he didn't tell my dad I went and saw his my dad was taken straight in hosp
Hello Leonora , you are doing so well under the circumstances, keep strong.
You should have a respiratory team who can advise your husband on technique regarding his inhaler. By refusing to use a spacer your husband is inhaling less medication and is more at risk of developing thrush. I have asthma and always rinse my mouth with salt water after using steroid inhaler. If I get thrush, rather than struggle to get antibiotics from a doctor I add a few drops of clove oil to coconut oil and swill round my mouth, hold as long as possible before spitting out, it works for me.
Your husband is a bully, have you tried calling his bluff? Next time he threatens a divorce tell him to go ahead as you are fed up with caring for such a selfish, ungrateful person and would welcome your freedom even if it means forfeiting your beloved cats.
If you are too empathetic to take this approach, explain to him how his behaviour is affecting you and ask him to find a solution about how to make this difficult situation less stressful for you both, as you you see the only option is to leave.
He needs to “man up” and accept some responsibility .
If he thinks he can manage without you, suggest you take a short break so you can both think things through. No one should be treated the way you are but unfortunately it happens so much BUT your first duty of care is to yourself.
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