the elephant in the room

it seems kind of reductionist to say that my grandmothers illness "killed" my grandfather, but the exhaustion surely played a factor. and certainly your mother has lived with your fathers illness and the attending circumstances for a lot longer than 4-6 years. i think - if my mom could go back - she would have told him to slow down, to relax more. to have scolded him or even embarassed him, in order to (selfishly?) keep him alive. but, i don't think he would have been as happy. i think he might have passed as soon, if not sooner. my grandmothers illness gave him focus, and admittedly he lost his way a bit after she died. but he didn't know what else to do, especially as my grandmother had been increasingly taking care of him as his eyes and ears worsened.

anyway, i'm not sure if there's a point here or not, but, hmm, yeah.

I have to echo this -- it's a situation I've not been involved in at all with my family so far, so I will count my blessings. I fear I can only offer empathy and kind thoughts, but I hope they count for something -- I can see why you title your thread this, though.

None of this is intended in any way critically, as I think you're doing really very well and your doubts are entirely appropriate. As someone who was married for 23 years, and for some of that time thought we'd be together for life, I cannot resist projecting how I would feel. You know the real people, so this guesswork is probably a waste of everyone's time.

mum is due to go into hospital some time in the next few days — not itself a serious procedure, more a routine and expected follow-up, which should greatly relieve the worst of the symptoms she's currently struggling with, and i'll be looking after dad while she's there

at least, that's what she's been saying, and yes, it too makes sense: the evidence for optimism's as good as the evidence against

but my thought is, is there something she knows — or half-knows — that she hasn't said: we've got through so much by not dwelling on the worst (and i totally get my cheerfulness from her) that i worry we all get end-run by not seeing something big and bad (which could nevertheless be averted) until it's too late

it becomes OK then, because here's the ambulance and that says it's real: she knows she isn't just shirking (it's totally not how WE think of it, but it is how she sees it, i think... she's ashamed to let the side down until it's "official" and she's off the hook)

she's ashamed of not getting better quicker, so she sort of talks her health up, and it's very hard to get past that

what i worry i think is that one time she leaves just it a bit too long: none of her illnesses are irreversible exactly, provided she takes care of herself, but there's just such a complicated armoury of reasons and pressures all round everything now

it IS easier to leave them unbothered, and respect their wishes, and only come when they call — i'm not feeling bad about the past particularly, i'm just suddenly wondering about now

Your mother "enjoyed" hospital those times before because it really was an emergency, there really was no alternative and therefore she did not feel guilty for not looking after your father for that short period. But these are choices she has made (albeit mediated and suggested perhaps by her upbringing and society but not a great time to bring in the psychology of our personality) and you should respect them by not trying to worry too much - this is the thing she does not want you to do after all.

Best wishes though.

at the moment i'm on drop-everything alert, as she cd be called in with only a day's notice, and i'll jump on a train and be there: apparently she was given an appointment last week but declined it (w/o consulting w.us) bcz she knew it was pressweek for me and becky was in america, so "impossible" for us -> this is sort of what i mean, that her habit of not interrupting our worklives at at any price become a thoughtfulness too far

i think (i hope) this will be a tight squeak but then fine: she sounds rough this morning but is still mobile and in control

my boss went through exactly the same thing with her dad and has been brilliant (plus as the statscock shows time hangs heavy on my hands at work a lot of the time — i am really not needed there as much as i am there, except in pressweek!!)

Needless to say, L was the exact reverse. She wanted it brought to the surface, not to be hidden. I've no idea how the rest of the family are coping - they very meaningfully have not bothered to get in touch with me since I moved last November - but suspect that at least one of them continues to die slowly, if he has not done so already. All internal, of course.

she is v.tuff but v.ill also

i will only be around v.sporadically the next two weeks, as no email access at home except via becky's laptop now and then - a mixed blessing

thanks for yr support everyone

i'm off again now

In a previous job I used to organise support for home and family carers. A frequent scenario would be carers referred to us (social services) by concerned family members, GPs etc who were subsequently very reluctant to acknowledge or accept they themselves needed support. This was especially true if the carer was a spouse/partner.

Even when it was obvious to all concerned that the carers own health and well being was at risk, and thus with it their ability to care, many felt so intensely attached to their role as carer that anything suggesting they needed additional help seemed threatening, undermining, or a vote of no confidence in the care they provided. Sometimes there would be an understandable reluctance to simply trust anyone else providing care to a loved one.

Not sure how much of this applies to your parents situation Mark but it all sounds very familiar, and the ‘concerned family members’ living some distance away can’t help. The only practical suggestion I have is to make sure your parent’s local social services are involved to see what practical support can be offered. In my experience this can be everything for regular Respite Care to outside carers going into the home on a daily basis to do some of the more demanding care tasks. This may be extremely difficult for your mother to accept (and your father) but now may well be precisely the right time to see what additional support is available and get a ‘care assessment’ done or reassessed.

Whatever I wish you wisdom and strength during what must be a very difficult time for you and your family.

Missing you already.

anyway, she is much better at the moment, and the immediate crisis is past: she may even be out of hospital today

she is tremendously stubborn and independent, which is of course in many ways terrific

i am clocked off till tuesday and back at work: thanks everyone for yr posts and emails

(also: the elephant is at last being talked about...)

bcz ok, well we just reached the next "difficult step", the OTHER EVEN BIGGER elephant, which is managing the fact that the main thing which has helped her cope and is making her so ill is that she is an alcoholic - in the last five-six years, on a yearly cycle, she has given up drinking for five-six months then fallen off the wagon again for the same

after the scare last year - see up-thread - we sorted out good carers and persuaded her to tolerate them, and she has come to adore them, which is good: my dad also perked up tremendously, so several good steps there, and she was dry for six or eight months at least

however abt ten weeks ago - ? - she fell downstairs and gashed her knee and broke four toes: as usual she has made an impressively speedy recovery...

then she was having a new kitchen installed - workmen in the house, disruption, etc etc: they were incredibly swift and efficient (BEST BUILDERS EVAH!) Bbut when is this kind of stuff not stressful?

anyway a neighbour just called my aunt saying, well, mum is definitely drinking again AND DRIVING and the neighbour is frightened and doesn't know what to do, and the aunt called becky this afternoon

the pain of the broken foot i think knocked her off the wagon (i don't THINK the fall was caused by alcohol) (another neighbour was there quite quickly who i think would have told us) and the kitchen stuff made it worse and and and

it's not like she lacks reasons/excuses even without these

but this blatant drinking-and-driving thing is sort of a new development, in the sense that she was always "discreet" before (also of course often dishonest, or anyway evasive): part of me thinks, OK, this is what she wants to be caught doing now - screaming for an intervention (another part thinks: screaming for a brandy)

i'm stuck in london for ten days, workwise: becky goes up on tuesday, to take away the car keys and, well, who knows?

my aunt is a GP (i think a very good one) and doesn't have any better advice than anyone else on this - dad without mum and vice versa is not an option, moving them out of the house is not an option, their carers are as good as we're likely to get (actually they're great) but mum is their employer not us so their hands are tied - she's clever, she's always been wilful, she's even more stubborn than me (!), she feels ferociously sorry for herself (with good reason: looking after my dad hasn't been fun, she decided to take it all on herself and fended off all alternatives until she collapsed BUT watching him gradually fail physically would always have seemed impossibly unfair surely?), and this is her only fun as she sees it - yes it will kill her, but...

i think becky and i pretty much know how we're going to go on handling it, and actually the involvement of outsiders makes a lot of things easier in a strange way

Alcoholism is a worse elephant than most. For a start, it's pink. It starts out small and cute and cuddly and then it grows HUGE AND HALLUCINOGENIC AND TAKES OVER YOUR LIFE.

Support to you and Becky, and best hopes for your parents.

the upside (somewhat) is that more people in regular contact with her - ie not just family - now feel comfortable talking about the actual immediate problem (alcohol) openly

it feels weird to talk about him those terms considering how i described him in my first post above, but i suppose it's the way of things. my mother's boyfriend has recently had an accident and is suffering from vertigo and it has brought out his "latent" drinking capacity (doubly good with the vertigo, obv) and he appears disturbingly like my grandfather during his drinking episodes, but you know what they say about people marrying their fathers...

i guess what i'm saying is that i know it's hard to remove what appears to be someone's only source of comfort, but it's a false comfort and you obviously know that and you and becky are doing a manifestly good thing by dealing with it now. my mother probably has enough regret without having to have added that on top.

the fact that it was now an open secret in the village i think upset her more than anything, and it's the embarrassment of it that is driving her will to change things currently

as you can imagine i am more than usually anxious and testy at the moment so be THANKFUL I'M NOT STILL A MODERATOR!!

xx

be excellent to each other

Good luck, and since I probably won't talk to you before then, happy hollydays!

i think bcz we didn't want to spoil the holiday, for dad esp. but also for ourselves, we didn't take any action beyond getting testy with her a couple of times - as a result, we're being backed into a kind of corner, where she will act up more and worse, to twist us into spending more and more time at home

this kind of emotional blackmail, which she has always practised to a small extent, is now just making me more and more depressed and angry and resistant: it simply works by opposites with me anyway, makes me more inclined to treat a manipulative choice as an actual choice and go with the bad one, the one i'm being guilt-tripped about

result: i completely hate myself in this state - not least bcz it makes me kneejerk irritable and impatient in unrelated situations, which then get into my head and make me sleepless, a bad bad loop - i wz broody and silent most days of this week, and snappy w.everyone at the slightest pretext, and i'm worried and unsettled that this doesn't look like lifting

[for three years ilx was a good, positive escape and distraction and soothement for me: back then it helped me cope; now i find it a minefield - and not so much bcz of changes in ilx, even, more like a valued relationship which i myself am causing to break down bcz i need to break SOMETHING, and to hurt SOMEONE, all bcz i'm deflecting so much - not all - of my rage from mum]

[i think also part of me wd rather feel ALONE AND MARTYRED AND ISOLATED than admit despair or weariness or unhappiness or confusion or conflict... ie the very worst trait that i've inherited from mum is kicking in big-time]

your insight is key,
just don't become a slave to
anger and blackmail

I'm rooting for you,
don't let bullshit bring you down.
(that's easy to say...)

but she is still here, and herself, and that

I mean good thoughts, obv., but godot can stay.

ok my sister rang me at work at lunchtime to say that the care agency into whose care we have entrusted our parents' lives contacted her this morning, giving just one week's notice that they are "withdrawing their care package"

eg from next weekend we have to find a completely new agency

reason: my mum is "difficult" and only one of their carers is prepared to take her on, but is unable - because of other commitments - to supply the coverage we need

now it's possible they are in their contractual rights to give us just a week's notice (the contracts is at my parents' house not my sister's so she can't check for a few days)

but exactly how professional is it to allow this situation to go unflagged until the plug is pulled — this is the first we heard she was considered "difficult" by professionals — and what is the deal w.people expecting to be paid as qualified carers finding old, ill, frightened clients "difficult" anyway (who did they expect to need to be caring for?)

(i mean my mum *is* "difficult" in that she is stubborn and demanding, but she is also friendly, utterly civil even to those she dislikes, in possession of her wits, and — with a bit of chivvying — prepared to tackle the work of getting better in the face of fairly grim symptoms)

what's so aggravating is that the qualified carer who is prepared to work with her has really tremendous, literally life-saving work over the last two years: by encouraging her, by keeping on at her get up, get about etc, by being her friend, and (twice last year) by realising she was had become very seriously ill and getting her to hospital in time for her to recover ratgher than die

this carer we will now lose — the others, who couldn't abide mum apparently, have NEVER (individually) had to deal with her more than half a dozen hours a week; the one we actually mind about losing was not only excellent (and a good friend to mum) but dealt with her on a far more sustained basis

(i have to admit we always knew — bcz the agency once let slip to us — that everyone regarded her as the best by far they had to offer)

anyway, at the moment i am still just angry and ranting — there may turn out to be more to it we haven’t discovered yet, and of course one of the reasons mny parents have carers is that her actual immediate family (besides having jobs and other commitments) would not last three weeks taking on the care themselves (untrained and unsupported)

not least bcz we are well aware that mum wrecked her own health — though no one realised this till far too late — by taking on primary carer duties for my dad alone, and refusing to devolve these duties: my sister and i can share stuff to some extent but we have seen first-hand how damaging it is to find yrself drawn into this role when it isn't expressly vocational, and when all the complexities of close family relationships (the guilt, the loyalty, the various subtle unresolved conflicts) are also all webbed into the mix

haha other than this, things are actually not too bad: the serial emergency scares of last year have receded; mum has just been diagnosed w.osteoporosis, which is a bit awful as it's not curable and the pain leaves her very tired and low, but at least we now know what's causing the pain (which began just before xmas), and hence can start thinking about how to cope with it

actually in other terms she's a lot better than she was this time last year, mentally and physically, and several of the issues detailed upthread have kind of just gone, by virtue of her accepting that she is now an invalid whose days in charge are honourably over

if anyone does have anything to say abt their expereinces of care agencies, feel free: also if you feel i've missed some key point and am being unreasonable in my anger at feeling very let down

Anyway, best wishes.

I don't think you're being unreasonable at all - one week's notice does not give you or your sister much time to find a new care provider.

i'm not actually sure what nhs care coverage is available in shropshire, my sister is the expert on that

silver lining: last year's problems were all scary - this year's are so far only annoying

It's not much of a suggestion, but it's all I can come up with right now. Wishing you well and sending lots of positive thoughts, though. This must be horribly stressful.

also i slightly suspect she is a bit burned-out on caring for mum, and that it's THIS that is the secret catalyst of this turn of events - she has been bad-cop carer for two difficult years

my mum is now a fulltime invalid, physically no longer able to drive. and in one way this is good: we no longer have to worry about her being a danger behind the wheel, or being able to drive to buy alcohol. on the other hand, the window of relief after her series of hospitalisations last year was all too short - three weeks at most, after which she started suffering severe near-constant back-pain, which turned out to be osteoporosis, very fast-onset (her GP wz slow diagnosing this, i think)

she is no fun when she's in pain: who is? in the last six weeks - when the carer agency bailed on us - it's become a chore going home to look after them at weekends, really bcz quality time is now always trumped by work-time (meals to cook; beds to change; pills to administer), and (which is easily the worst aspect of it) you start to resent it, resent the illness, resent the helplessness, resent the encroachment on yr own space and time and life

at the weekend my sister phoned me to say mum wz saying that one of her doctors had said she needn't carry on with a particular treatment (it's a kind of electric pad, which is supposed to massage the back muscles and make the stronger when exercise is out of the question)

i. now it's possible this doctor did say this (or something vaguely like it)
ii. and we have no idea if it was actually doing any good, we only started trying it a couple of weeks ago
iii. and we are well aware that it was making her back ache more, initially (but so does exercise after long disuse)

the problem is, we have stopped trusting her: everything has to be doublechecked - the tricks she learnt as an alcoholic carry on, with her pill dosage, with treatments she's taken against, with everything

it's exhausting, not physically, but morally: you start to get furiously defensively angry on behalf of such-and-such a procedure - started to help her pain be eased - not bcz you KNOW it's working (you don't; it may not be) but bcz you WANT it to be working, you want SOMETHING to work, bcz the one thing you certainly know is that doing nothing, just lying in bed taking pills, can't make things better

watching someone you love in constant pain is awful; worse is caring for someone in considerable pain who you suspect of (somewhat) exaggerating the pain sometimes to get her way, to get attention, to make things happen (things = her children spending more time at home with her) (i mean "giving up our jobs" kind of time)

it's not even that we think this is conscious: it certainly isn't calculated - it's the psychological leftovers of the coping strategies she developed when she wz my dad's primary carer, stubbornly refusing to ask for help, unconsciously creating situations now and then where help became necessary

some of what was wrong with her last year is clearly better: she's frailer but less ill

and in some ways of course, she's just SO strong: everything's a battle, and the grim reaper got a whole BUNCH of bloody noses last year haha

Are you and your sister between you able to get a reasonable amount of time for your (non-professional) lives?

barring emergencies this is workable and easily bearable

(but as of this month i will have been up three weekends out of four: this is the bad borderline)

Me too. I know situations like that can be so emotionally overwhelming and draining, so I'm just wishing for the best for you and your family.

staying in for observation - they seem confident it is minor (her breathing is ok again) and she will be out again quickly

it is pressweek so i can't be back in shrops again till mid-week next week earliest (and fact checking and reading for tiny punctuation typos is not that rewarding when you just learnt that the mag is to close: i mean, why bother getting it all spelled right?)

I'm so so sorry, Mark. Seems to be the week from hell for you.

: (

I know how difficult and stressful all this is. re: our conversation at the FAP last month - my uncle with dementia died last week. A relief to all really - his last 6 months in a home were worse than anything. the funeral was this Monday (Golder's Green crem - a v. interesting place). However, my dad is going downhill quite fast - he keeps getting mini strokes, which in themselves are not too serious, but I fear the precursors to something much worse. I think they have done damage - he seemed slow and absent-minded.

in terms of spirit and interest in life etc, it is totally not mum's time to go - but she finds the constant back-pain very demoralising

the breathing trouble comes and goes, the blood clot thing is new and scary

my dad got very absent-minded and slow after he had chickenpox a few years back but in the end totally recovered, so that condition is not necessarily irreversible

Does this mean you are out of a job soon? I mean, I know it's only part of your earnings, but my notion is that it is an important part.

but it might be time for me to spread my wings

good thoughts

hi di!!

sistrah becky back there now - i go some time next week

(anthony, i'm sorry abt yr mum, and i hope things get better - the worst thing is when yr doin all you can and it's not really anything to do w.anything you can do)

Hang tough, mark!!

on the whole this hospital has been very good over the last two or three years, i think - even though the ward mum has most often been in wz in the paper three weeks ago when it got invaded by ants!! - but this is incredibly frustrating and sloppy, and a bit scary also: she is gravely ill, this we know, but if she is worse than she need be simply bcz the various departments haven't joined the dots up yet!?!

anyway becky said he sounded very embarrassed and contrite by the end of the phonecall, and she will talk to him again tomorrow, and call the liver specialist direct if she isn't satisfied

still unclear how long she'll be in: several days at least