My name is Lee. And I’m the primary carer for my wife. She’s my soul mate and they best person I know.
She’s always suffered from asthma and bad chest infections but in 2017 she got diagnosed with traciabrohnocmalasia (probably spelt wrong!). It’s fairly rare breathing problem but means her Airways close completely when bad. Her normal collapse is bad at 95%.
To give you context how bad and the decline, we got married in 2016 and honeymooned in New York. In one afternoon we walked from the bottom to 57th street. Now she can’t walk to the local pub, which is maybe 200 metres away!
It’s going to kill her and I don’t know how to cope with this. It could be that cough tomorrow that is the start, or it could (hopefully) be in 30 years.
How do you guys cope? What gets you through?
I’m struggling lots and would appreciate any wisdom you guys may have.
I feel totally alone. Nobody understands and as great as family are, nobody sees it all the time. With an invisible illness like my wife’s, nobody sees he having to put her socks on because bending blocks her airways. Nobody sees me having to help her around the house on. A bad day (5 out of 7).
Hi Lee, I didn’t want to read and not say anything, that sounds incredibly tough for both of you. Do you have any emotional or practical support? Do you need anything to make caring on a bad day easier
Hiya Lee, Can I say you are not alone with these thoughts, which of course are distressing. One thing that helps is understanding, that in reality, that yes your wife has breathing problems and may die, but like you say it can’t be predicted when or even if. What you have to do is enjoy the time you do have, which could be decades.
My son has learning disabilities he’s 34 and it says it’s likely he’ll die 20 years before the average age a normal man dies. It used to really bother me, but then I realised the average age is different for many people. No-one can predict when they will die or how and that’s a fact. I used to think about how will I cope if he dies first…I have also thought about how will he cope if I die first. To be fair, it’s pointless to even enter into this, as no definite answer will ever happen, and that is the truth really.
Whatever happens, has to be coped with regardless…and that would be the case with the situation of anything in life.
My advice, take each day as it comes and be happy together.
Hi Lee
I too am a carer to my spouse so I understand the strain you’re under.
My husband had a massive stroke out of nowhere at 45 years old. This was over two and half years ago and I have slowly gone through grieving my old life. This process has helped me though.
Like people say to you take one day at a time, and if you’re having a bad day that’s ok…ride it out…I say to myself “I’m just going to write this day off as a bad day”. Being gentle with yourself is key.
I’ve started doing some hypnosis cd’s that I found in storage from years ago for relaxation and I find this has helped me relax and also have some me time.
I’ve accepted friends and family don’t understand but have gone through so many emotions of anger, resentment etc that they were blind to the pain I was in.
I now wish them well, thinking please don’t take your life for granted as you never know what’s round the corner… enjoy life!
Sorry to hear about your situation that sounds incredibly tough and emotionally demanding.
It’s important to realise you’re not alone and to get all the support you’re entitled to and need. The forum is a good place to start as many on here are caring for a spouse or partner and can completely relate to what you’re feeling.
As well as the forum, have a look through our information pages and check you’re receiving all that you can, there is also a link to local carers groups where you can connect with carers in your area:
If you would like to chat on the phone to one of our Caring Caller volunteers, you can arrange this by emailing membership@carersuk.org this is a service we’re offering our members during the pandemic to help with feeling low or isolated or just plain fed up! They can also signpost you to more help as you chat.
If you’d prefer to chat in a group we’re hosting weekly Zoom meetings for carers. Again, these are informal meet-ups where you can share as much as you’re comfortable with and connect with other carers. The link to join up is here