Hi, today I think I have reached a point where I dont know whether to turn left or right. My Mum is end stage chronic respiratory disease. She is currently at home being looked after by my Dad but he is finding it hard. She is angry with everyone, not accepting of her illness and trying to remain in control. She has always been very controlling. She thinks all medical professionals are idiots (I am one of those idiots!). I have a brother and sister who are sort of helping but not much. My sister is a recovering alcoholic who has her own guilt and demons to deal with and has a fuse as short as a piece of spaghetti! My brother is not local but close enough to visit if he wanted too. He has a young family, ful time job and also the apple of mums eye! Me… im the one who does the practical things when I can, but I am too scared to have those conversations with her because truly i too dont want to face that this is happening.

Hmm, I guess the key question boils down to - just how much time does your mum have left? (As in, what do the ‘idiot medics’ think!). I don’t know how long end-stage emphysemia can last?

If we are talking ‘she won’t see another Xmas’, then I would guess that unless thing are utterly unbearable, and your dad might collapse (die, even?) under the continued strain, you could try and ‘soldier on’ with your mum at home still, and ‘home care’ the order of the day, perhaps at any rate until she reaches ‘very-end-stage’ where life expectancy is weeks/days (when hospitalisation might ‘have’ to be necessary) (as in, any hospice at home care is impossible for whatever reasons).

Other than that, if her current life expectancy is considerably longer than another year, you either have to ‘shoulder the home care’ (I don’t mean you personally, I mean that is what, as a family, you opt for)…or you opt for residential care/nursing care.

across these bleak choices of course falls the money issue. Reisdential care (without CHC) is at least £100 a day, and if she has to be self-funding that is punitive indeed/.

Irespective wof what anyone else in the family wants/prfers, including your mum, what do YOU want to happen now?

Thank you!

As of yet we dont know but my feelings are months rather than years. She is end stage pulmonary fibrosis on home oxygen. Before Christmas she had her gall bladder removed which came with risks and a general anaesthetic . She had home oxygen before this but was not using it as she should. She was told she may not survive the operation but she did and fought hard to recover. Unfortunately though it has left her lungs much weaker so the disease process appears to have sped up since Christmas. I think you are right that home care at this stage by family is the better option but am fully aware hospitalisation/hospice likely to be where she has her end.

I have had a very long conversation with my brother this evening who is also medical and he has had a very frank conversation with my Dad. Some of her anger we just have to deal with and learn not to react because she is understandably frustrated, angry and sad that this is how her life will end. I can only begin to imagine how she feels. I am hoping that the respiratory team will discuss an end of life plan with her soon and then maybe she will soften a little. In the past when it has been discussed she has not engaged in the conversation.

How old is mum? Has the GP arranged NHS Continuing Healthcare for her?

Hi Ramps … should it be needed … FAST TRACK NHS CONTINUING HEALTHCARE :

NHS Continuing Healthcare Fast Track process | Care To Be Different

Not nice but … a consideration ?

Main CHC / NHS Continuing Healthcare thread :

Not easy to absorb but … may well be an answer.

Thank you so very much for those links I will take a look.

She is only 72

Btw… the GP is one of those idiots! She will not engage in a visit. When I called the surgery they will not help without my Mums consent.

Your welcome.

There are no age barriers for CHC / NHS Continuing Healthcare … young / middle age / senior citizen … all may qualify for said care.

Normally , first port of call is one’s gp … there are other alternatives as the first section points out … how to start the process.

If you don’t like bland text , the video from Professor Luke Clements is HIGHLY recommended !

I’m wondering whether some kind of tranquilliser/anti-depressant etc might help ameliorate her mental state. At this stage, it surely is a case of ‘anything that makes her less unhappy’…???

I can understand why she is angry - ‘premature mortality’ is not easy to cope with…she will feel cheated.

Yes - antidepressants is something we have discussed too and can also help with the panic when she becomes short of breath on exertion. I discussed it with the respiratory nurses yesterday and it is something they will talk to her about. Thank you

I’;m a big believer in ‘whatever makes you happy’. If her lifespan is now months, not years, the ‘downsides’ of ADs etc become much, much less pertinent.

A gentle passing is surely what is wanted now???

I can understand that she feels her life has been cut short, but that doesn’t give her ANY excuse to be angry to those who love her most, who are trying to do their very best for her.
You cannot be forced to care for her, and the only power she has over you is the power you let her have.
Maybe a gentle reminder of this would be appropriate?