My 60 year old brother was told his cancer was terminal at the end of 2023 when it spread to his lungs but that with treatment he would have 6-7 years of a normal independent life. And until March this year that is what it was like. Then in March he started having trouble breathing and was admitted into hospital. Since that time he has been in and out of hospital and I have come to live with him.
He is eating very little and has lost a massive amount of weight. His breathing has not improved but he has got used to it by spending all his time in bed and just sitting up intermittently to cough up some phlegm. He uses a urine jar and only leaves his bed to use the toilet about once a day, which exhausts him.
During his last hospital stay he picked up covid which I also now have and I too am coughing up phlegm and the weight has also just dropped off me. I am really struggling to try to get over this and look after him. And this new reality has had a massive impact on both of us. The district nurses are regularly visiting but i feel so alone and can see no light at the end of this tunnel.
Hi @Debbie_1712 A few of us have seen your post, but I think weāre all struggling to find the words to help. This is such a difficult situation for someone to have to deal with, but you shouldnāt be alone in this.
Is there a MacMillan nurse service in your area? It may be worth asking your GP or your brotherās specialist about this, to help take the load off you and give you a chance to recover your health.
It might be a good idea to make contact with your local carers service. You can find them here if theyāre known to Carers UK: Support where you live | Carers UK
Some carer services have befriending schemes and/or activities for carers, depending on whether you can get out and about or not, or have access to a phone or computer. So even if youāre stuck inside without a break, you can still contact the outside world and meet with people in the same sort of situation as you.
On here, we tend to get together on āRoll Callā (itās a long story!) where we can all have a natter āover the garden fenceā: Roll Call May 2025 - Social area / Membersā corner - Carers Connect - The Carers UK online community
Feel free to drop in and join in the chat!
Has anyone mentioned NHS Continuing Healthcare to you? Itās for seriously or terminally ill patients, all care free of charge, either in his own home or residential care. Do you have Power of Attorney?
Now a horrible, but important, suggestion. Google āSigns of Dyingā.
I did this for mum, with tears running down my face, when I knew she was very ill but no one would talk to me.
I found lots of useful information about how the body slowly shuts down, over years. I wish in retrospect Iād done this when the first of our four parents was reaching the end of life.
Think about his final wishes? Which funeral director to use, how much can he afford, what service, music he wants?
Do this long before itās needed. Find out costs etc. so that when the moment comes, you know exactly what to do. My husband died in his sleep at 58. I arranged everything when I was in utter shock. Avoid this at all costs.
When mum was ill in a care home I was due to go to Greece on holiday. my GP insisted I went, as I was exhausted, whatever happened.
I made all the basic arrangements, so the funeral director knew what the situation was, so did the care home.
Iāll mention now that you will get a bill from the funeral director which will be paid immediately by the bank (assuming there are funds in the account). You donāt have to wait for probate.
Keep all the arrangements in a file, who you spoke to, what was agreed etc.
Have you had a Carers Assessment from Social Services, have they done a recent Needs Assessment for your brother?
Is it now time for him to move into residential care for 24/7 nursing?
Sorry, this is all awful to think about.
Is he getting all the disability benefits heās entitled to?
Thank you so much for coming back to me. I was feeling so desperate when I wrote the post. Just knowing someone has read it and can be bothered to reply is really helpful.
We thought we would be at least somewhat ready for this time when it eventually came but itās so early and weāre not.
Donāt as yet really know what is available in my brothers area as initially we both thought this was a blip and heād get better and since we realised thatās not the case, I have been in bed, heās been in bed.
Today his breathing deteriorated and he was basically just panting and his sats very down and pulse very up, so has gone back to hospital and Iām ashamed to say I feel so much relief. But awful fear theyāll send him home tomorrow. He was sent home by taxi last time because I was sick with (hospital acquired) covid and couldnāt drive, which was so hard.
I do have powers of attorney but have not yet used them. He was approached by palliative care when he was last in hospital but would not engage as thought heād be much better soon. Heās not so much in denial now so Iām hoping will engage this time.
You must talk to their Discharge Nurse and say you are too ill, he needs to go to a nursing home.
@Debbie_1712 BIG hugs
A very practical tip - contact your local hospice: Hospice Care Finder | Hospice UK
While you may not need them immediately, connecting with them and finding out what they can do to support you at home is important.
When you donāt know if itās blip because of COVID (and sounds like pneumonia with it) or near āthe endā having them on board is a big help.They will also know what help is available nearby.
If you havenāt seen your GP, I highly recommend you tell them about COVID and ask them to check you for pneumonia, and also the hospital. Recent COVID cases are causing pneumonia which is a bacterial infection, it reduces lung breathing capacity and can increase heart palpitations and increase heart rateā¦ALL reducing energy. If they see pneumonia you can get some antibiotics prescribed that can help you both get more energy.
Also by contacting your GP you can tell them how youāre not coping with your brotherās current state, and they can help get you support especially if you can get NHS Continuing Healthcare as @bowlingbun has suggested.
This could still be a blip due to COVID + pneumonia BUT the result is still the same you canāt cope alone when youāre ill. Local support charities like Macmillan cancer support and Hospice UK can helpā¦there may a Hospice at Home service by trained nurses.
Sending some strength and best wishes xo
If he has refused to talk to the Palliative Care team, then you need to find out more about how long he has left, so you can think about the future even if he wonāt. Typical male bury your head in the sand behaviour!
I had a similar problem with my dad who had prostate cancer. The GP was unhelpful, so I rang a cancer helpline. They asked me about dadās symptoms and from these they made a guesstimate about his future. They were only a couple of weeks out.
Then I went back to the GP, and told them what the helpline had said. He said he couldnāt talk about dad due to patient confidentiality, but could talk generally. Patients gradually went down hill, but one day would take to their bed and not really get out again. Usually 2 weeks from the end.
This enabled me to plan, as I would then be responsible for my very disabled mum as well as my son with brain damage and a business to run!
Victoriaās post has reminded me that the hospice in my area, Oakhaven, has a range of services including a day centre, which dad went to several times a week. If his medication needed changing, they could sort it out there and then. Accepting all their help meant at the end he was only an inpatient for a few days before he died. I support Oakhaven a lot, just in case I need them later! (I had kidney cancer 20 years ago.). Definitely worth finding out what your nearest hospice can offer. Dad had his own room, the staff were so kind, they even had a bedroom relatives could stay in if needed. Best of all they were experts in pain relief medication.
Thank you thank you thank you guys. So appreciative of the advice as this is completely new and Iām sure weāll manage when Iām better and we have some support in place. Weāve gone from anticipating years to the complete unknown, but symptoms that sound very like end of life, almost overnight. But as you say maybe Covid, maybe pneumonia.
I am feeling better today and even managed to wash his sheets. I have put out feelers to the hospital and hope someone will come back to me tomorrow. I might even have a go at washing myselfā¦
You sound desperately tired.
Are you aware of the rules that hospitals are supposed to follow for discharges?
They may be on the hospital website, but some pretend they donāt know there are any!
Maybe one of the moderators can load them up here for you?
The most important thing to know is that they can be fined for an Unsafe Discharge, and sending him home to you when you are so unwell should count.
On several occasions I had to ring the hospital mum was in and complain, by phone, to the Chief Executiveās Office on this basis. Itās amazing how quickly hospital staff can change their minds if they know that their prospects of promotion are going to be hampered if they arrange an unsafe discharge!
At the bottom of the page you may want to read
Carersā experiences of hospital discharge: Discharge to Assess model
PAGE 5 the Pathways - all hospitals have a discharge to access model.