I’m Mark, until January 2017 was full-time carer for my wife who sadly died of brain cancer.

Myself hospitalised 8 months later with sepsis due to self neglect, and 3 weeks in hospital, 12 hours before discharge brother falls over and has hip replacement but recovered with complications and also required 10 days in ITU.

Now full-time caring for my younger, 52 year old, brother who I share a house with and who also has severe COPD.

Currently feeling rather overwhelmed and un-supported.


Hi Mark, you have had an awful lot to cope with in recent years.
Who decided it was OK for brother to move in? When did you last have a real holiday?

Hello Mark and welcome
Is it just one brother? Or one with a hip and one with COPD?
If you had a magic wand and could summon up all the support you want, what would that support be? What are the biggest problems?


Hi bowlingbun

We live together in our family home, inherited from our father. Had lived there with him, and my wife until she died, for 20 years. Have taken in a lodger to help cover the living costs and lack of income due to me no longer working.

Last time I had a proper holiday, not being a carer, was 2015. Manage to get the odd night away, 4 days last year in Venice. Any longer seems to result in brother being admitted to hospital.

So reluctant to go away for any extended period, and becoming increasingly difficult as his health deteriorates and requiring higher support levels during periods of a flare plus he gets .

Are you sure your brother is claiming all the benefits which he is entitled to?
If he keeps going in and out of hospital, are you aware of NHS Continuing Healthcare?
Has he had a recent Needs Assessment from Social Services, and you, a Carers Assessment?

Yes its just one brother. Has had COPD for some time but has now developed into stage 3 Severe COPD. This time last year he was on 5 hours oxygen a day, now its 24/7, so sadly I feel it’s safe to assume there is some deterioration.

Accepting there is very little I can do to arrest the development of my brother Simon’s condition, and the inevitability of it all, I feel it would be helpful to overcome some of the barriers I am facing in making contact with, and hopefully obtaining some suggestions, from other carers facing similar challenges.

For example, when I was caring for my wife there was/is a facebook Brain Tumour Carers Group which I accessed. It allows those caring for Brain Tumour sufferers to express their frustrations and seek constructive advice in helping them manage the condition for which they are caring. More importantly for me it provided a safe environment to be able to unload, and therefore deal with my feelings and frustrations with people who understood because they were in a similar situation and had some empathy, and I don’t seem to be able to find anything like this at the moment. Perhaps COPD is more niche than Brain Tumours.

I do have a close support network who help me deal with other issues but there is currently nobody I know who has much understanding of COPD. So I am limited to seeking advice from the pulmonary team, which is limited, or the facebook copd group which has useful advice, but mainly from sufferers and doesn’t deal with a copd carers frustrations very well.

The biggest problem I am currently facing is having to still deal with the sheer exhaustion of caring for my wife upto and during end-of-life I know seem to thrown into another major caring role for another terminal condition.

It feels somewhat relentless with the end result being relief from caring but even more grief. I am happy to care for my brother, there isn’t anybody else left, and am desperate to make his life as comfortable as I am able to, but it is starting to really get me down now.

If your brother is now receiving oxygen 24/7, then please have a look at all the information on “NHS Continuing Healthcare”.

Be sure to ask Social Services for the Needs and Carers Assessments too, you do NOT have to deal with all this on your own.

In total I’ve had ten carees, and so I know only too well that it gets tougher as we get older. I’ve lost all four of our parents, husband, brother, and sister in law.

Sadly, I developed a potentially life threatening health issues, the consultant said that “25 years without a holiday hasn’t done you any favours”. A year later, my lovely husband died from a massive heart attack at the age of 58. It’s so important that carers get regularly time off.

CHC / NHS Continuing Heathcare ?

Main thread :


This is a bit of a saga in itself.

I am on carers allowance following Simon being given the Mobility element of PIP, back dated to May 2018. He had originally applied for PIP in 2017, but the application got lost so the CAB were contacted and help guide the successful application process and assessment.

He is also on JSA and UC, yes I know he should be ESA and there was an interview to transfer to ESA last year was cancelled 45 mins prior to the appointment time, they said they would rearrange, but nothing yet! In the meantime he gets a fit note from the doctors and we rock up to JobCentre plus every 3 months for him to sign on, the staff have to come down to the waiting area to see him! He is unfit to work, can barely walk more than a few feet, has to break going up and down the stairs, permanently attached to oxygen but still has to sign on, on time! He should really be registered disabled but don’t know where to start with this.

No needs assessment as yet and no carers assessment as yet although have completed a GP’s carer registration form and handed in to surgery last week

He hasn’t been in hospital since late 2017, but did tend to admit himself when I was away from home for more than a week.