Your 'cynicism' is just reality, I only mentioned the bugs thing cause my mum was the only one on her ICU that went straight home instead of accepting a transfer to the general ward for a few more days care.  She was also the only one that didn't get readmitted to ICU with serious infection (and she went home with drains attached).  Your general feeling towards it all is more than justified.  Totally get you about some medics not liking to give cold hard facts, it does my head in, I can only really deal with facts not the kindly, comforting sentiment they try to give!  And hey, I don't consider anything you've put as whinging, it's horrible but helpful to be reminded that there is such utter crap care going on in places, keeps people fighting for improvements.  It's just of all the types of care to get right your situation is the kind where every step should be checked and checked again.  I just can't believe they're doing this to you and your family.

Glad you don't need advocacy, it would have surprised me if you had from some of your posts, but you never know what someone's like in those other scenarios.  Must make it hard that everything is in front of your wife.  There are questions I don't ask with my husband there (for his sake) we're all guilty of it.

From the few words you've said about your daughter I LIKE the sound of her! ;)

I also like gamechanger's post below (possibly above?).  Your love for your wife is so obvious from your posts, but boy do you also need to have some care for you and I'm assuming she loves you every bit as much and would want that for you.

Man, wish I was there and could physically do something, it's grinding my gears what you're being put through. >:)  And none of the medics will have gone into it wanting it to be like this, it's just awful.

Good luck for this week and hopefully some major improvement in your care.

LJx

More thanks - kind and thoughtful and practical words.

gamechanger, yes, she knows of my condition, but certainly at moment that's a long way from her concerns. A horrible day to day. Our daughter and grandchildren were meant to be visiting, but J thought should put off for a week when "things" might be better. Unguardedly I said that that will not be the case.....she asked point blank why, am I dying? Now, I know that she was told at least 3 times untreatable cancer and that she SAID yes knows what that means but on reflection I suppose no one actually put it in single syllables. But I said "yes".

I got 2 hours of anger and bitterness. She has suffered from chronic acute depression and all that goes with it for well over 50 years. And no she has no wish to help me at all. Accused me of deliberately getting ill so as to feel sorrier for myself. And lots more. It's going to get worse.

No more from me for a while I think.

Take care all. 

Well I'll be keeping you in my thoughts.  Sorry about the depression, it can result in people being really nasty sadly as you know.  And hey, doesn't really help to know it's the illness rather than the person.

Do what you can to take care of yourself man and hopefully we'll get an update from you somewhere down the line.

LJx

Some cancer pariants in late stage can get hypercalcaemia it to much calcium in the the blood causes depression etc i cant give you medical advice its what happend to liz at easter then it started going up when she had first chemo apparently it leaches calsium off the bones but they treated it its like brain poisoning you might look into it regards .p

What you're saying sounds like my ex-mother-in-law, she was probably the nastiest person I've ever met and she tried and failed for years to get a diagnosis of depression.  When I was diagnosed Bipolar she was noticeably jealous, even said "what did you do to get the diagnosis?"  Needless to say I left my husband after 14 years together, and not because of him, I couldn't bear to wake up in decades to come and have that woman still in my life.  She had no life, but it was her laziness that caused her to have no life, all these things she claimed she 'wanted to do' that would make her happy, but the reality was she wanted everyone else to arrange it for her and hand it to her on a plate.  She was miserable because she mistakenly believed it was the job of her family (rather than her) to make her happy.

I have no reason to doubt that the folk you know have proper diagnosed depression.  But it is interesting because when you get to people with moderate or severe depression we're not nasty to anyone, we have no energy to be so, the physical drain on our body leaves us only with the energy to try and exist and not allow the latest bout to cause lasting damage to our relationships, employment etc.  The nastiness comes in mild depression, and quite often that is wrongly diagnosed (due to pressure from the patient).  And even when it is genuine mild depression people are still responsible for their own actions and are capable of working hard to bite their tongue so there really is no excuse to be nasty to people.

I do wish more people with mild depression were held to account if they treat their loved ones badly, even though it is an illness.  I never blamed anything on my illness, it's too much of a cop out. 

 

Well.....MacM nurse is certainly the most helpful - and a wondrous combination of tell it like it is but hugely kind manner - but actual practical help remains hypothetical. In 3 weeks no "care" whatsoever. Community nurse promises visits to help with washing and dressing that is simply outwith her authority to deliver. Bizarrely if fully prepared to pay £20 an hour for 2 hours per day then Soc Services have no interest. Wife now moved downstairs - I am sleeping on the floor.

Advice - do NOT make any attempt to cope. To do so will be taken as a sign of "no need for ANY assistance". IF you can bear the guilt just say, can't do it, I'm going away, leave a key and phone 999. You are not legally bound to look after anyone.  

It's crazy isn't it?   The same applies in so many fundamental areas of life that the advice/support/help from authorities diminishes if you seem to cope well.  That ultimately leads to distance from the authorities and them not being there to see when you aren't coping.

I hate how governments run things.

:cry:

Moving on .....slowly. Finally declared "fast-track" (apparently free) need for Social Care and after 10 days  increased from 2 visits per day to team of two, 4 times per day. I guess deterioration not so noticeable to me seeing her all of every day but more so to weekly visitors, but I could no longer move her sufficiently to e.g. re-make bed. An appointment at Hayward House Hospice on Tuesday for "assessment" - our MacM nurse seems to expect that she will be offered the next available bed (and Community Nurse who visited today wondered about seeking immediate admission now). 

The question of willingness to leave home remains. While it may sound heartless I wish that she would accept that a well-regarded Hospice can care much better for her than can I and any number of often-changing support workers. And TBH I am at about the limit of my endurance and strength.

It is in many ways easier to cope with the physical changes than to witness the decline of a once huge intellectual ability. Rapid shifts between lucidity - if with memory losses - and random often meaningless sentences.

I guess no one says it is easy - and it isn't.  

Hi DJ,

So glad to hear that things are moving.

Do not think for two seconds you sound heartless.  Once someone is that ill it is definitely best for them that they are with specialists whose job it is to deal with all the things they need.  It also allows you to be a husband again rather than a carer and that is important for both of you, especially as the end gets closer.

I kind of think it would be best if we were all made to make these decisions when we are young and well and that is when we can look at things more objectively.  I have recently looked into an advance are plan and I do not want my husband becoming a carer, I would rather be in the hospice and he remain very much my husband.

So sorry about the mental decline though, that must be tough on both of you :(

If it helps any I know a number of people that have had to move into a hospice, or even just a sheltered housing unit, and while most of them fought it (at least to some degree) once there they generally realised it was best for them.  I really hope your wife has the lucidity at the right time to see it that way.

You sound like you have been such a stalwart and I have serious respect for you as I don't know how you have got through all this.  Fingers crossed she gets a hospice place and you are both able to be better looked after.

Thinking of you, LJxx