Poorly wife. Husband not coping.

[Gingerfishpogo]

This is going to sound rotten. And it's long.

My wife was diagnosed last year with "mild" Bronchiectasis a lung condition for which there is no cure.

She is always short of breath always tired and wiped out.

She used to be so fit. Used to do triathlons, swim 1000's of metres and run for 6 miles. She did ride London twice. Now she is always short of breath and always ill. If she gets a normal mild cold it really puts her back and has a far more dramatic impact on her than a non sufferer.

I try to support her as much as i can. I take the kids out whenever I can (2 girls aged 5 and 6) and my shifts allow. We are both shift workers and I work 7 out of 10 weekends which puts pressure on her when i am not around.

I am on a flexi pattern but have to work 90% of my shift with my team and i am dead on 90% so there isn't anymore wriggle room.

I take the kids out to clubs in the evenings as much as i can and do all the house work, maintenance and just try to take as much pressure off her as i can and I don't mind doing it (the only thing I struggle with is cooking but i can do a mean fish fingers chips and beans).

The rotten part is I can't help but blame her. Two to three years ago she started complaining of repeated chest infections and fatigue. I badgered her and badgered her to go to a gp but she wouldn't. Eventually she did go but played it down so they just said it was a virus. It all got worse. Eventually it took me, my mother and her mother two years of constant badgering to finally get her to go and get proper treatment. I can't help but feel she could have got some help back then and it wouldn't be as bad now.

All I ever hear from her is how tired she is. I try to help her but she says there is nothing I can do. I feel totally left out and forgotten about. I get that she has this incurable lung condition but it is also a very mild case. Some people end up with oxygen every night and rrally struggling and she is not like that at all.

I feel i am not married to a women anymore and am married to a chest infection.

I just want to scream at her "I EXIST. I MATTER I AM YOUR HUSBAND NOT SOME BLOKE WHO LIVES ON YOUR HOUSE AND HELPS OUT WITH ODD JOBS AND FERRYING CHILDREN ABOUT".

I know I am being selfish. I am no angel and could be a better husband but in the same way I don't know what else I could do to support her.

Just venting I guess.
Anyone have any tips?

Crunchymint.
I am not interested in benefits. Just a bit of help and guidance.

I understand that, I was replying to another poster. Getting PIP is really hard. Unfortunately in most places there is very little help for lung conditions.
Counselling might help, but beyond that it is just trying to find ways to manage and make your lives easier.
Also the tiredness may get better as her condition is better managed. Being propped up by pillows when sleeping can sometimes help. She may not be getting a good quality sleep at the moment. But adjusting to a life changing illness takes time.
At least you know now that earlier treatment would have made no long term difference.

I think you need some help getting over the idea that she caused this.

She didn't. Most people do ignore minor illnesses, and mostly those minor illnesses just go away on their own. Your wife turned out to be seriously ill but she didn't MAKE herself ill.

You sound in desperate need of nurture yourself. SOmeone to notice how tired and fed up you are. Your situation would make anyone tired and fed up!

Your employer has responsibilities to you as her carer and also parent. Make sure they are aware. If possible join a union.

Cooking. May I suggest that you learn to do a little more but, note the but, you use a slow cooker? Not expensive . There are ace child friendly recipes online for slow cookers now. If you prepare them at night, dump the food in and switch on in the morning, you have a lovely meal ready when you get back.

Getting a bit of you time. I was in an equivalent position some years ago. I took three hours off, out of my holiday allowance, every six weeks. Ie half a day. I used it for me. It was the only way I could remain sane.

I agree on counselling, some sort of ability to vent for you.

It’s honestly not her fault, but you need jointly to make arrangements.

And thank you. You’ve made me reconsider how I manage my chronic illness.

Just to say in terms of employers, OP is not doing any more caring than most mothers who work full time and do all the housework

A few other things

• bronchiectasis often goes undiagnosed, it is a struggle sometimes for GPs to recognise (it was for mine!) so I wouldn't blame your wife for not realising how serious it was at first

-smoking, or even being in a smoking environment, is not good for people with bronchiectasis, but I imagine you both know that

• keeping the home above 18 degrees is recommended for people with chronic lung conditions. I think it helped us also to get a dehumidifier, you also don't want to be in a damp atmosphere. I have a fine collection of warm and waterproof clothing and often wear layers with a waterproof one on top. I know from painful experience that getting cold and wet e.g if the weather changes, can lead to a serious infection. Having a warm scarf to put round the neck or even over the mouth is also a good idea in winter.

Really think that op is only getting a hard time here because he’s a man.

There is nothing wrong with feeling frustrated or sad about the way your relationship/ home life has changed.

If you can’t vent on an anonymous forum, where can you? Or is support limited only to women?

Some of the posters are giving him a hard time but what I heard is a father complaining about what a mother normally takes on without complaint.

His wife is sick and has a chronic illness that she needs to manage. He needs to help by giving her the time to recover and then get on top of managing this illness. His wife is working FT while sick. I don't know how she is doing it.

So while he has had a hard time from some, I would tell a woman the same. You are together in sickness and in health and there are good and bad times. This is a time that sucks and you need to pull yourself together and be the man you want your DDs to emulate.

Yes I would tell a woman the same. Yes it is hard to come to terms with having a life long illness, and because his wife was so active and fit it sounds difficult for OP to come to terms with this as well. But in terms of caring - his wife is working full time, has the kids by herself 7 weekends out of 10 and does most of the cooking. OP tries to take the kids out by himself on the other 3 weekends for an hour or two and does all the housework. He is actually doing less than 50/50 childcare - not his fault because of his shifts, and all the housework. That is no different and less than most mothers. So no I don't feel sorry for him about that. The emotional impact is fair enough though.

Also many people seem to have this idea that if you live healthily, nothing will happen to you around illness until you are in your 80s or 90s. Sadly as OP now knows that is not true. These things happen.

I would recommend maybe going to Relate? The issues are emotional.

Most people with chronic ill health work. Sadly there is virtually no support for these people. But at least you now know OP that no she did not make it worse by not seeking medical treatment earlier, and as it is mild, as long as she follows any treatment there is a good chance it will not get worse. However chronic health problems can affect you more when you are much older as you take longer to recover anyway.

Ok. Thanks to all those who have been supportive. I now have some ideas of where to go for help and what to do.

I had a long talk with DW last night about our relationship and what we can both do and what I can do. She knows I am frustrated and part of that is that I do feel helpless. As some have pointed out, i need to manage how angry the whole situation has made me feel. As said in my first post, i have been blaming her with no basis and that is my problem to get over.

I never said I was a hero and never said my wife is working full time. She isn't. She does work hard though.

I have a very physically, mentally a emotionly exhausting job and at times it all mixes together in a toxic mix of exhaustion.

I am very proud of her and I adore her. I took those marriage vows and intend to stick to them. In sickness and in health.

I thought that having admitted my feelings even on an anonymous internet forum was a good thing to do and really really am thankful for the men and women on here that have offered the help and advice I sought.

I guess everyone is entitled to their opinions both positive and negative however it would seem that one or two have missed the point and may need to reflect from underneath their cold damp bridge whilst they wait for the next Billy Goat to wander by.

Crunchymint.
I take the kids out for far more than an hour or two. Trust me I do loads. In terms of childcare it is about 60 40 weighted to her.
O never said I don't do cooking. What I said is I struggle with it. I cook about 50 percent of the meals and that includes when she gets in after me and I have picked the kids up from school.

She is an amazing woman and I don't know how she does it but trust me I do my bit. Even before she was ill I did the majority of the housework.

When i say 7 out of 10 weekends in includes when i am working lates and nights so i am around for some of the time. It's not like I am not there at all. I hope that clarifies a few points.

Hi, another bronchiectasis sufferer here as well. So sorry your wife has been diagnosed with this illness, and sorry it is taking such a toll on you too.

First of all, please don't think things can't get any better. Yes, it is a chronic condition, but not a death sentence. Lots of people can live normal, active lives as long as the condition is properly managed.

I have a mild version of the disease as well, and my lungs are also colonised with a nasty bug (pseudomonas). I was very unwell with this a couple of years ago. Had pneumonia followed by one nasty chest infection after another. For many months I felt extremely tired and would run a mild fever most evenings. I was also extremely anxious and stressed which didn't help! I had a milder case of pneumonia again last year, but thanks to daily chest clearance and plenty of exercise I have not had an infection in almost a year now. I cough every day and bring up mucus, but apart from that my energy levels are back to normal.

May I offer some tips from my perspective?

• Make sure she is under the care of a good specialist consultant. I have been seen by specialists in two hospitals, my local one and the Royal Brompton. The difference is nothing short of astonishing. My local hospital only ran the most basic of blood tests, no CT scan. The Consultant didn't seem very interested at all, showed no compassion and I got more and more panicked and depressed. At the Brompton however I was seen by four different fantastic teams (asthma, physio, immunology and bronchiectasis/host defence), had CT scans, lots and lots of blood tests to rule out Cystic Fibrosis etc.

• Proper chest clearance: Massively important, like previous posters said. Best taught by specialist physios, but you can also google "active cycle of breathing technique" which is very easy to learn. Autogenic drainage works even better, though it requires more practice. Does your wife have time and opportunity during her working day to do this? Everybody is different, but personally I only manage to bring up the mucus around midday. Fortunately I work from home, but if I was in an office I would speak to my managers and ask for a private space to do the exercises. I feel extremely self conscious about coughing and clearing my chest in front of others. If I don't have the privacy to do this, I end up doing a half baked, inefficient job somewhere in a public toilet... if I do this two days in a row I feel my temperature going up straight away!

• Exercise: According to my Consultant, just as important as chest clearance. Just getting lots of fresh air down the lungs helps loosen the mucus. Obviously your dw shouldn't overdo it, but just a brisk walk, a gentle jog if she can manage or a bike ride can make a huge difference. My personal favourite is swimming. Don't know if it is the deep regular breathing during breast stroke or the humid air in the pool - but I always feel great afterwards!

• Thinning mucus: this makes it easier to cough up. I use mucus thinning pills and inhale hypotonic saline.

• help DW to stay clear of infections. Easier said than done with two young children! Make sure the kids wash their hands as soon as they get home; or at least have some antibacterial hand gel ready. Don't feel embarrassed to ask visitors to clean their hands too.

• Try not to feel resentful towards your DW, however hard it may be. I completely understand how hard this situation is for you, but trust me, being the one who is ill is not easy either. I struggled, still do, with daily fear of it getting worse. The feeling of breathlessness and chest tightness when there is a lot of mucus can be incredibly depressing :-( At my lowest I would cry every day. Couldn't even take the sight of grandparents playing with their grandkids because I was convinced I would not live long enough to experience this :-(

Also, I second what one of the earlier posters said - it is not necessarily her "fault" that the condition was not diagnosed earlier. I saw my GP about my repeated winter coughs for years and years and was always fobbed off and told it was just my asthma playing up. Once I had persuaded them to refer me to a specialist at my local hospital I still was not diagnosed with anything. In the end I insisted on a referral to the Royal Brompton, and then, finally, I got my diagnosis.

• Final tip (I have no idea how you would broach this with her - good luck !): All the chronic coughing, chest clearance can be a huge strain on the pelvic floor area (as I have discovered myself). Potential risks include stress incontinence and prolapse. And once a prolapse occurs, I think surgery would be pretty much out of the question because of the chronic cough.

If you can at all afford it, I would strongly recommend she has her pelvic floor assessed by a private womens' health phsyio. The physio would be able to show her exercises to strengthen the pelvic muscles to prevent any future problems.

Sorry, I realise most of these tips are aimed at your DW, though I really sympathise with your situation. I guess the best thing you can do in the long run is to help your DW get better, and in the short run to try and support each other emotionally without apportioning blame for what is essentially a case of very very bad luck. Wishing you all the Best OP - it can get better!

My mum (75) also suffers from this.

Echo the above recommendation about Royal Brompton. They have been absolutely amazing with Mum. See if she can get referred there by GP. It is the NHS at its absolute best.

Interesting also the comments about pelvic floor and prolapse. My mum has had this too in last 5 years or so - but I don't think had ever made the link with coughing. She has always assumed it was childbirth related from ages ago, but comments on this were interesting for thought.

Tough! You just have to get on with it. Who said life has to be easy. At least you have your health. Man up!

Sorry, but I really hate whinning men. If you were ill, you'd be ashamed and horrified that she felt like this about your 'condition'.

Back under your bridge poisonous Smurf.

Sorry, but I really hate whinning men. If you were ill, you'd be ashamed and horrified that she felt like this about your 'condition'.

Oh please. Whinning women are ok then?

I have a chronic health condition that causes fatigue (not lung related) but my DH is much more supportive than you are of your wife.

It is not her fault. The fact that she was previously sporty and active has probably made the impact of her condition terrible on her mental health. Not only has she lost her health but it has also taken her hobbies, and her husband blames her too. Poor woman

In contrast, my DH urged me to reduce my working hours so I have energy left outside of work, instead of finishing each working day so exhausted I could barely stand up. The financial impact was huge, but working part time made a massive difference to me, I now have a 'normal' life but in miniature, we have a social life and quality time together.

He has never complained that I don't make more effort, he knows I can't. I did not ask to become ill. Sometimes life is shit. We deal with it together. If he had blamed me for my illness, expected me to carry on like it wasn't there and felt I should make more effort as his life was now harder I would certainly not have stayed with him.

It's really early days for you both post diagnosis. She will get better at managing the condition and recognising the signs.

Brilliant advice about the Brompton I wish I'd known this a few years ago. You both need to arm yourself with knowledge.

Also psychologically this is like a grieving process for you both. Of the fit healthy life you used to have. And that's really hard to say goodbye to. But you will adjust to the changes and cope better with them.

As she learns to manage the disease better there is every reason for her to be healthier. Not worse. She's grieving. You're angry. But the way I think your anger with her is out of line. She isn't to blame.

No advice I'm afraid but just wanted to say I understand how you feel. My DH has arthritis and probably fibromyalgia according to the GP. I had felt very resentful at times that I have had to work and do all childcare and most of the childcare. I chose a man to be my equal partner in housework and childcare and neither of us to expect the bulk of it to fall to me.

Things have improved for DH in recent years thankfully and he is able to do more which has taken the pressure off. I can't believe how nasty some people have been. Because some women marry lazy, useful men people can't complain if they unexpectedly end up doing most of the work?

I think that it is early days at the moment and hopefully as time by your wife will find it easier to cope with her condition. I think it quite outrageous that you are angry with her when she is suffering so much though. Being supportive is much more than doing some housework and taking the kids out (something which many parents do a lot of anyway). You need to appreciate that however hard things are for you, they are much much worse for her and your attitude needs to really change.

I wouldn't describe yourself as a carer either (not sure if you do but some other posters seem to be). As someone with a chronic health condition who has a job and looks herself (like your wife), I find it quite insulting if anyone suggests DH is my carer.

My best friend has bronchiectasis. We've been friends for over 50 years, so I've had plenty of time to find out a lot about the condition. As pp have said, my (& her) main recommendations are a) ask to be referred to the Brompton - they are just wonderful; b) get advice from a specialist physiotherapist to ensure that your wife knows the best way to clear her chest - and do the physio EVERY day, even when she feels rough; c) ensure that your wife always keeps some antibiotics in the house, so that she can start taking them as soon as she suspects a chest infection - don't wait until she can get a GP appointment.
Bronchiectasis is hard to diagnose, so please don't blame your wife - dr's do fob you off when you present with a cough (I have asthma, so I know..!)
Lastly, encourage your wife to join support groups - there's a FB page for UK sufferers, as well as several forums that you can join - and find out as much as possible about her condition. If your GP runs an 'expert patient' group, join that as well. She knows her body better than anyone else - encourage her to help herself to become an expert.
My friend was diagnosed at 3 - and I've just attended her 65th birthday party - so there's light at the end of the tunnel.
All the best to you and your family.

Exactly, @MissWilmottsGhost.

OP you have clarified that you do half the cooking, less than half the childcare, the majority of the housework. You provide no personal care or additional support for your wife. Isn't that just, I dunno, marriage and fatherhood versus an actual caring role? What exactly are you not coping with?

Some good advice for you as a career and you both as a couple in previous posts. It sounds as if she was into exercise before and struggled to go to the GP at the start of being unwell. Could she be struggling with being diagnosed with a chronic condition? She may need some help to come to terms with it. I wonder if a referral to physiotherapist for chest physio or to a pulmonary rehabilitation team may help her. That can provide exercises and she may like being more actively trying to manage her symptoms?

OP you have clarified that you do half the cooking, less than half the childcare, the majority of the housework. You provide no personal care or additional support for your wife. Isn't that just, I dunno, marriage and fatherhood versus an actual caring role? What exactly are you not coping with?

Yes, being a carer involves actually looking after someone, not just doing the childcare or housework, even if it is more than 50% or even 100%. If that was the definition of a "carer" I would say that a large proportion of married women and probably some men are carers.
It gets on my nerves that so many people define someone as a "carer" just because they are married to someone with an illness or disability even if that person has a job and is perfectly capable of looking after themselves,