Hi there
I’m new to caring. My husband has acute lung disease and has recently had a rapid deterioration in his health. He had a collapsed lung which due to his condition was quite difficult to fix, it took about 3 months. He has lost about 5 stone over the past 3 years and is drastically under wait.
Since he came out of hospital about 4 weeks ago I have been his career as he can’t do much for himself. I don’t mind this even tho it is very wearing…we also have a dog and I work, only 10 hours a week now.
I find it difficult to get my head around how I feel, how I should feel and what’s the right way to feel.
My husband is unable to go out as he can only walk a few steps before needing his oxygen. Our lives have stopped and I don’t think they will ever br the same again. We have ordered a mobility scooter for him which will hopefully help get him out but this also stresses me out as to where we can go with it will he be ok on it etc.
Life is just full of changes and it is just soooooo difficult.
Rant over x
Hi and welcome.
Welcome to the forum. Did the hospital arrange 6 weeks free Reablement Care?
Did they arrange an NHS Continuing Healthcare Assessment for him?
Did they assess your home and arrange for all required aids to be provided before discharge?
You need a Carers Assessment from Social Services to enable you to talk about your caring role, and they can consider how they can help you
Is your husband receiving Attendance Allowance or PIP.
We are here to help if we can, caring is difficult and non carers just don’t understand.
Hello Lynn
Welcome to the forum.
Please phone the Carers UK helpline and have Bowlingbuns reply to hand as a shortlist for things to ask and discuss with them for advice.
Carers UK information and support
Our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)
Hi Lynn
Some things you could do via your surgery, well we did them through ours.
Home mobility aids, has he got a commode? a hospital style bed so he can be propped up in it for his chest? Ask the surgery for a visit from the district nurse to review his care, then discuss commode and bed if you haven’t got them, she can order these.
Or if the nurse visits to check for pressure sores ask her then if you don’t have these things.
Also ask that your husband is on home visits.
Have you got a blue badge for parking? apply for one.
Ask your husband if he would like you to write a letter from him giving the surgery permission to discuss his health and appointments etc with you, this is a godsend.
You can then do the phone calls when he isn’t able to talk so well, you are also informed.
You can then talk with them on his behalf and even attend an appointment booked in his name to review and discuss with them. I have been doing this for years for my mother.
Hi Lynn
There is no right way to feel, your lives have been disrupted by this event.
You will be feeling lots of things and all of them are natural human responses.
There will be upset, anger, emotions of all kinds and fear, love and hope, a muddle mess and mix of feelings.
With my mother there have been gradual deteriorations and some drastic sudden ones, after a couple of years it becomes the way of life, it’s jus how things are, we’ve adapted and found new ways of doing things and having quality of life rather than quantity. Emotions give way to adapting and overcoming.
Breathe.
Be organised for medications and appointments.
Get informed about what help you can get and start the process for getting it.
On a daily life sense, take it one day at a time, let tomorrow take care of itself.
Look for quality of life in the day - even if it is just a favourite biscuit with the afternoon brew.
You really do need your husband to give permission for you to speak with the doctors on his behalf. My mother has lung disease and gave me permission to speak with them several years ago and it has been a learning curve and so worthwhile because I am informed and I have a rapport with her GP and the nurses which is so valuable now.
Be kind to yourself Lynn, don’t put unnecessary expectations on yourself.
Be your own best friend and cheerleader.
Lynn, have you sorted out Power of Attorney for your husband?
(Considered also who you would like to manage your affairs if you were unable to do them yourself!)
Do you and your husband talk about financial matters?
It’s so important that he lets you help with this sort of thing.
After my dad died, I found that he’d always dealt with all their financial matters, mum had never even read a bank statement. I did everything possible to encourage her, but finally she said she’d just like me to manage it all for her.
I find that keeping a diary helps me.
Hi
I deal with all the finances I will look into power of attorney tho.
Thanks
Thanks for the response
I don’t think I have ever had so many emotions running around at one time. I’m sure it will settle down in time
We do need to see about power of attorney
Thanks again
Power of Attorney used to be very quick, as soon as it was signed it could be used. Now it’s a longer process, might take 6 months. That said, even if the process isn’t completed, a signature shows clear intent.
The current average waiting time is 20 weeks. Believe it or not, that’s an improvement on the time it was taking during lockdown. albeit not much of one.
There will be so many because the sky has just fallen in on you both, it is normal to have them and they will calm down.
The emotions will settle down in time then kick off again - this could be a few times over until you are finding things to be the new normal and taking them more in your stride.
You can do power of attorney yourselves on the Gvt website, there is a sliding scale for the charges so have a look at that in case you qualify for it.
Ignore the box that asks if you want to inform anyone, you don’t need to and it makes it take longer.
Please do remember to do that letter to the surgery from your husband giving you permission to discuss his health and appointments. You can write it for him to sign and the letter is as simple as that, Please be informed that I give my wife, (your name), permission to discuss all my health matters and appointments on my behalf as I am finding it difficult at times to hold a telephone conversation and to inform my wife afterwards.
As said this will be an enormous help going forwards because you are informed and, as said, you can go to the surgery in his name and have discussions with the GP or nurse on his behalf. I reviews by phone or in person with my mothers GP.
Also ask for him to have home visits now - that includes covid vaccines and flu vaccinations if not too late this year, he will be on the list for future ones.
It is all very top-heavy at the moment, high emotions, stress and a lot to organise and sort, but when they are done some things will become easier and other things will give you peace of mind.