the elephant in the room

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as some of you know, my parents are aging and seriously ailing: my dad has had parkinson's disease, a slow form of it, since 1967, and is now very severely disabled, while my mother has — basically — worn herself out as his primary carer, and is now really quite unwell herself

my sister just phoned me to say she is now genuinely worried that mum is actually much iller than she has ever told either of us. this would be in character: she kept from us quite how hard she was finding things, as of four or five years ago, until the moment she collapsed and had to be rushed to hospital, and we had to move into emergency support mode, the point being really that it was only when the blue light was flashing outside the house that she could let down her guard enough to say, even to herself, "i can't cope"

with this and a subsequent hospitalisation the following year, she recovered astonishing quickly — and my attitude has somewhat been that, yes she is very ill, but this kind of brinkmanship drama is also the only way she can absolve herself of the responsibility she's so selflessly taken on, and win herself some much needed respite (i've never known ANYONE who enjoyed being in hospital so much). in other words, i tend to downplay the ultimate seriousness — and am generally encouraged in this by the rest of the family, because my role is to be the ever-cheerful unflappable one who keeps everyone's spirits up etc etc. "it's just pointless EVERYONE being frightened and unhappy, mark" said a friend of the family last year: "they prefer you the way you are..." (becky gets considerably more anxious than me but is also far more organised and bossy, which is just as essential i think...)

the problem is, i think it really is the case that mum would downplay the seriousness of a genuinely serious condition so as not to worry us, and has always been really incredibly stubborn at resisting our gentler attempts to "intervene" — she also keeps dad in the dark, which of course upsets him... the thing is, i think this is all for the best of motives, but it has become such an ingrained habit: as Becky just said to me, "Mum feels so disempowered anyway, I hate to go behind her back even to ask the GP..."

as their children, both of us have lived with the shadow of dad's possible death for much longer than can be usual — i was told he might well die soon when i was about ten or 11, which is to say, more than 30 years ago, and while a sequence of medical breakthroughs made nonsense of this prediction, actually the deep psychological reaction to it doesn't just get switched off... part of coping with dad's illness, for us all, has been to normalise it: to assume that death is NEVER round the corner, and that things can be dealt with and staved off and generally managed... and so far they have, so nothing too much to beat ourselves up about there

the problem being that i now wonder if this strategy, which has become second nature to mum as well as becky and me, may have been exactly the wrong way to go about caring for HER

― mark s (mark s), Monday, 7 October 2002 19:18 (twenty-three years ago)

i don't know, though, mark...if there's any one way to care for/about someone, really. when my grandmother took ill with cancer - which was well back when i was in HS - my grandfather (who was in his late 70s already), went into hypervigilance mode, even though (as a septegenarian) he had earned the right to have this burden "unloaded" on my mother and father (and, of course, my sister and i.) my grandfather had always been very bright and full of both life and energy, even though he had serious hearing and eye problems from his 70s on. he was never winded, exhausted, or took particularly ill. after my grandmother passed away though (four years this january), he was never the same. it had exhausted him, drained him. he died last winter, and he was not the same man. although he was only 83 he looked 90+ (or maybe more to the point, undead). he had spent the last two winters in the hospital. the first time we were told he "wouldn't make it." but he did, considerably weaker. he was nursed back to working health (quite literally as my mom had to take on a visiting nurse to oversee him in the day), but then deteriorated again last winter just as quickly as he had seemingly recovered.

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.

― jess (dubplatestyle), Monday, 7 October 2002 19:29 (twenty-three years ago)

i suppose the important thing that i might have been trying to say (if i didn't feel so addled today) was that your mum and dad are both still alive, so nothing's too late, etc. etc. which sounds crass and cheesy and all, but yes, also TRUE. does your mom "do" much, outside of the house, or with you and becky (although from what i gather you and she both live fairly far from them, etc.)? (i know this sounds kind of like i'm asking if they're shut ins, but my point is more that part of what i think wore my grandfather out is that he had no other "outlets" for the 5-6 years my grandmother was ill. it was just one trip to the doctors/hospital/chemo/tests/better/worse/middling after another. then after her death, he really lost his sole means of communication, spent far too much time alone. my mother, of course, as an only child, did exactly the same thing. she could have easily pawned off some of the responsibility on her cousins or other family if only to relax a minute, but of course had to be in control 24/7 which made her very, VERY unhappy for quite a long time: depressed, irritable, weight gain, smoking again, poor diet, no time, etc. and now that she can reverse all these things she's stuck with the fact that she "gained" it all by losing them.)

― jess (dubplatestyle), Monday, 7 October 2002 19:40 (twenty-three years ago)

mark i keep coming back and re-reading this, trying to think of something to say that might bring an answer for you, but i dont think there is a simple way to resolve what you are talking about.
caring for someone who is seriously ill most definately takes its toll on the carer and with your mum being elderly herself it isnt going to get any easier obviously. but from what you say it is almost a driving force behind her, she needs to do this for your dad so i dont think trying to stop her will help.
the only thing i can suggest really is for you and your sister to take more charge of your mums health by being less gentle about intervening ie: tell her she is going to go stay with your sister or you for a weekend while the other one minds your dad, or something along those lines.
im sorry to hear all this mark, sending you and yours my thoughts :-)

― donna (donna), Monday, 7 October 2002 19:43 (twenty-three years ago)

mark i keep coming back and re-reading this, trying to think of something to say that might bring an answer for you, but i dont think there is a simple
way to resolve what you are talking about.

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.

― Ned Raggett (Ned), Monday, 7 October 2002 19:48 (twenty-three years ago)

I'm sorry to hear all of this (first time i'm hearing abt your father since i haven't been on ILE for too long). Again, I wouldn't know what to say but whatever you decide to do I'm sure it will be for the best and i hope it works out well for everybody in your family.

― Julio Desouza (jdesouza), Monday, 7 October 2002 19:51 (twenty-three years ago)

(((HUGS))) Mark

This can't be easy for you or your sister, especially if you don't live that close to your parents.

I went through something similar when my Dad was diagnosed - after a lifetime of an unblemished health record - with throat cancer which reduced him from a large, jolly, ex-international rugby player to a (literal) skeleton within about a year. My Mother - never a well woman at the best of times - nursed him at home and the effort took a great toll on her already poor health. She died shortly after he did, chiefly of a broken heart and having quite literally given up the will to live without him.

My brother and I were not geographically close to my parents, though we would try and get back once a month to visit. They were both very proud and stubborn people - my Dad seemed inordinately pleased that he was being cared for At Home By His Wife rather than spending time in hospitals (which he hated, and which possibly scared him), but my Mum because exhausted with the physical exertion as well as the mental worry of being his primary carer. Eventually I managed to persuade her that she should get some extra help, and her GP was great in helping to arrange a some occasional respite nursing care. There's a whole load of back-up services available to help people in your parents' position - as long as they aren't too proud to accept the help, as I know many parents can be - so maybe it's worth a call to your family doctor or Social Services?

I wish you all the very best, in these dreadful, difficult times.

C J

― C J (C J), Monday, 7 October 2002 19:57 (twenty-three years ago)

At the risk of overcrowding this thread with not-very-helpful expressions of sympathy mark i'd like to add my own. I've never been in your situation either but i do understand the doubts that can arise, looking back over years stiff-upper-lip family dealings and wondering whether a different approach might have proved a better one. Whatever conclusions you reach, I hope it doesn't end at undue regrets. You have my best wishes.

― jones (actual), Monday, 7 October 2002 20:33 (twenty-three years ago)

I've not been through anything much like this (my favourite aunt dying of multiple sclerosis was very different - I was young and really distressed and kind of given a free pass out of it all). Firstly, sympathy and supportive thoughts, for what little that is worth. Secondly, I kind of think that you have to respect your mother's decisions and approaches (as I think you have done). Offer support, visit, encourage the odd weekend away as suggested above, all you can do to help, but don't drag her away from caring for the man she loves as if you know better. I don't know either of them, obviously, but I find it very easy to imagine that her caring for your dad is the absolute necessary centre of her life.

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.

― Martin Skidmore (Martin Skidmore), Monday, 7 October 2002 20:40 (twenty-three years ago)

thanks guys, all of you

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

― mark s (mark s), Monday, 7 October 2002 21:35 (twenty-three years ago)

are you thinking your mum has something so seriously wrong that you may just lose her ?
please dont worry yourself down that path mark, ask her outright and go with the answer she gives you, then just be there for her and tell her you love her.

― donna (donna), Monday, 7 October 2002 21:43 (twenty-three years ago)

no, not exactly, donna — i mean that she sort of puts things off sometimes, including putting out of her mind that she's quite ill, so as not to bother us, until the crisis is so obvious that the emergency takes the responsibility of bothering us out of her hands

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

― mark s (mark s), Monday, 7 October 2002 21:57 (twenty-three years ago)

there isnt really much you can do to change the way your mum wishes to be, not that it is what you want to do i know, but you know what i mean.
it is tempting to start 'nagging' at her about her own health in an effort to get her to be more careful, but i suspect you will come up against a brick wall there anyway.
again, all advice sounds pretty useless ,but perhaps just asking her and telling her its ok for her to be ill / not perfect etc might help a little.
tell her that if she becomes very ill and allows it to get real bad it isnt doing your dad any good. not an especially nice thing to say but i can empathise with her feelings on this and think maybe the only way to get through is to push her button of 'caring for your dad the best way'.
apart from that it sounds to me as if you and your sister have been a wonderful support to both your parents by being there when needed and also allowing them the dignity of privacy.

― donna (donna), Monday, 7 October 2002 22:06 (twenty-three years ago)

best wishes and blessings duck s - please trust that you don't have to do anything more than what your best intentions suggest

17 "Remember that you are an actor in a drama, of such a kind as the author pleases to make it. If short, of a short one; if long, of a long one. If it is his pleasure you should act a poor man, a cripple, a governor, or a private person, see that you act it naturally. For this is your business, to act well the character assigned you; to choose it is another's."

― Epictetus Hand (tracerhand), Monday, 7 October 2002 22:17 (twenty-three years ago)

xOxOxOxOxO

― rainy (rainy), Tuesday, 8 October 2002 02:53 (twenty-three years ago)

i emailed you offlist. i love and worry about you mark, and have added you to my rosary list.

― anthony easton (anthony), Tuesday, 8 October 2002 04:27 (twenty-three years ago)

I think what Martin said above is very good advice. It sounds like you have done a tremendous job in respecting what appears to be your mothers wishes in this situation. Something that occurred to me when my father was ill last year was that the brave face he (and my mother) were putting on for us was also for themselves. It does not help to dwell on the imponderables, and the difficulties and one of the joys of children is to see them out there enjoying their lives - to live vicariously through them. My parents (as I think yours do) know that I will always be there for them if needed, and that sometimes they don't have to ask - but if they don't ask they they are leaving too much to the mind reading. They would equally hate my goodwill to become a burden and for me to start to resent them for it.

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.

― Pete (Pete), Tuesday, 8 October 2002 09:00 (twenty-three years ago)

they're not shut-ins, she has help and several adoring neighbours who drop in during the day — though not strictly speaking carer help at the moment (there was someone who worked out brilliantly last year, until someone in her own family became ill and she had to move away — we have not yet found a replacement, this is a very rural area and so far there have always been insuperable problems... for example, it needs to be someone regular who they get to know and trust and who gets to know them, not just nursing on a rota)

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!!)

― mark s (mark s), Tuesday, 8 October 2002 09:45 (twenty-three years ago)

Mark, this is exactly what happened with Laura's mum ('93-'96). She deliberately banished all thoughts of death from her house and, one supposes, her mind (though I'm sceptical about the latter). She kept reassuring the family that it wasn't serious, even after cancer was diagnosed, more or less because she was too shit scared to go to the doctor for six months and because she thought it was "out of place" and "inappropriate." To die of shame, out of consideration for others. She did not want others to ponder about her, just to get on with our own lives. And yes, her husband and any of her daughters could have seized her by the neck and demanded that she face reality, but actually no they couldn't - keep a straight face, carry on even when it was obvious that she couldn't. So conversely the family had to surreptitiously take care of her - if that makes any sense - without her knowing it, even though she did. There are ways of doing it without bringing it to the surface, though knowing nothing of what your mum's illness might be (if indeed there is an illness), I'm not sure how applicable this would be to your family, though I suspect the "English way" in which we were both brought up accounts for both approaches. I do not know whether it did anything to prolong her life - she had three years' remission, but we all knew it was going to come back.

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.

― Marcello Carlin, Tuesday, 8 October 2002 10:07 (twenty-three years ago)

ok she goes into hospital tomorrow, so i'm off to catch a train now!! fingers x-ed foax!!

― mark s (mark s), Wednesday, 9 October 2002 10:10 (twenty-three years ago)

OK hope it all goes well.

― Julio Desouza (jdesouza), Wednesday, 9 October 2002 10:13 (twenty-three years ago)

love and hugs and best wishes to all the sinkahs.

― katie (katie), Wednesday, 9 October 2002 11:59 (twenty-three years ago)

Wishing y'all the best.

― Colin Meeder (Mert), Wednesday, 9 October 2002 12:13 (twenty-three years ago)

Eek, I'd not even read this thread. Hope it all goes well and it's nothing too serious, Mark.

― Tom (Groke), Wednesday, 9 October 2002 12:15 (twenty-three years ago)

*best wishes and more* :-)

― Ned Raggett (Ned), Wednesday, 9 October 2002 14:56 (twenty-three years ago)

Good luck, Mark.

― Martin Skidmore (Martin Skidmore), Wednesday, 9 October 2002 20:57 (twenty-three years ago)

Best wishes, Mark.

― Dan Perry (Dan Perry), Wednesday, 9 October 2002 21:05 (twenty-three years ago)

I do not have anything to say in the way of advice, but I want you to know that you are in my thoughts Mark and I hope everything goes well.

― Nicole (Nicole), Wednesday, 9 October 2002 21:08 (twenty-three years ago)

love

― boxcubed (boxcubed), Wednesday, 9 October 2002 21:24 (twenty-three years ago)

mum = not as bad as we feared, not as good as we hoped

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

― mark s (mark s), Saturday, 12 October 2002 20:45 (twenty-three years ago)

best wishes markess

― mark p (Mark P), Saturday, 12 October 2002 20:49 (twenty-three years ago)

mark, i'm gonna try to email you tonight, but it's nothing "urgent" (just best wishes, etc.) so no rush if you don't see it for another two weeks.

― jess (dubplatestyle), Saturday, 12 October 2002 20:55 (twenty-three years ago)

thanks guy

i'm off again now

― mark s (mark s), Saturday, 12 October 2002 20:57 (twenty-three years ago)

We'll be thinking of you, Mark. Good luck.

― Martin Skidmore (Martin Skidmore), Saturday, 12 October 2002 20:59 (twenty-three years ago)

yeah, hope it all works out for the best, mark

― mitch lastnamewithheld (mitchlnw), Saturday, 12 October 2002 22:42 (twenty-three years ago)

Best wishes from me, too.

― Rebecca (reb), Saturday, 12 October 2002 22:57 (twenty-three years ago)

ack i can't believe i just read this! mark, i hope your folks will be okay. and that you will be too.

― geeta (geeta), Sunday, 13 October 2002 00:59 (twenty-three years ago)

I'm no good at these things, but nonetheless. Best of luck and good wishes for you & yr. family.

― Sterling Clover (s_clover), Sunday, 13 October 2002 06:15 (twenty-three years ago)

Ashamed to say I’ve only just read this thread.

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.

― stevo (stevo), Sunday, 13 October 2002 09:24 (twenty-three years ago)

nice to hear from you again mark: hope everything goes well.

Missing you already.

― Julio Desouza (jdesouza), Sunday, 13 October 2002 10:02 (twenty-three years ago)

Fingers crossed everything works out.

― Billy Dods (Billy Dods), Sunday, 13 October 2002 10:24 (twenty-three years ago)

hey mark, hope all works out for the best.

― jel -- (jel), Sunday, 13 October 2002 12:06 (twenty-three years ago)

echoing everyone, i'm not sure what to say, but i wish you all the best of fortune.

― Maria (Maria), Sunday, 13 October 2002 12:35 (twenty-three years ago)

stevo yes, that is exactly the situation: the only respite she allows herself is the care she gets when she's allowed herself to become so ill she physically and urgently can't carry on... when we try and put other things in place, basically proper care for her as well as him, she vetoes it, or anyway cancels it after a month or so

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...)

― mark s (mark s), Friday, 18 October 2002 08:58 (twenty-three years ago)

More good wishes here -- there can never be enough. :-)

― Ned Raggett (Ned), Friday, 18 October 2002 13:50 (twenty-three years ago)

yeah...good to know that the worst is over.

― Julio Desouza (jdesouza), Friday, 18 October 2002 22:23 (twenty-three years ago)

one year passes...

blimey the above seems strangely long ago: lots of things did change for the better, just not everything...

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

― mark s (mark s), Thursday, 27 November 2003 20:24 (twenty-two years ago)

Heavens. :-( My best, Mark.

― Ned Raggett (Ned), Thursday, 27 November 2003 20:26 (twenty-two years ago)

That sounds rough. The very best luck to all of you - don't really know what more to say than that.....

― Pashmina (Pashmina), Thursday, 27 November 2003 20:48 (twenty-two years ago)

it will be rougher on becky than me over the next few days i suspect :(

― mark s (mark s), Thursday, 27 November 2003 20:57 (twenty-two years ago)

Skipping 32 messages at this point... Click here if you want to load them all.

Is this private care or NHS?

Anyway, best wishes.

― jel -- (jel), Friday, 25 February 2005 17:34 (twenty-one years ago)

Best wishes indeed, Mark. :-(

― Ned Raggett (Ned), Friday, 25 February 2005 17:36 (twenty-one years ago)

also if you feel i've missed some key point and am being unreasonable in my anger at feeling very let down

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.

― Leon the Fatboy (Ex Leon), Friday, 25 February 2005 17:39 (twenty-one years ago)

it's a private agency though partly paid for by various state benefits and insurance covers and [actually it's insanely complicated, except bcz they have pretty good savings and pensions — having been super-frugal and stoical all their lives, plus my dad's early-onset parkinson's meant no retirement bingeing (haha the idea of this is so alien to their lifestyles i grinned as i typed it) — they're way some way off being able to claim anything like full state coverage (basically they have to burn up their savings up to a cut-off level, and that won't be for a while) (it's not a terribly long while mind, but it gives us a bit of room for manouevre)

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

― mark s (mark s), Friday, 25 February 2005 17:42 (twenty-one years ago)

(ok my sister is WAY more furious than i realised!!) (she kept it down b4 cz i wz at work)

― mark s (mark s), Friday, 25 February 2005 20:37 (twenty-one years ago)

bah the agencies are all useless - we are VERY trepidatiously advertising locally now (village shop windows, parish magazines)

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

― mark s (mark s), Friday, 4 March 2005 12:55 (twenty-one years ago)

Best of luck Mark.

― Tom (Groke), Friday, 4 March 2005 13:03 (twenty-one years ago)

Can you not contact the one carer who seemed to get on well with your Mum, and see if she might be prepared to continue working for you privately, not through the care agency? The best recommendations usually come via word-of-mouth, so maybe this carer might be able to suggest friends/acquaintances to share the workload with.

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.

― C J (C J), Friday, 4 March 2005 13:07 (twenty-one years ago)

CJ that has already been explored - she feels duty-bound to all her other clients via the agency (which seems fair enough: mum is more important to US than all those other ppl but not more important in the world)

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

― mark s (mark s), Friday, 4 March 2005 13:14 (twenty-one years ago)

Sorry to hear all of this Mark, I am sure it's the last thing you needed. Good thoughts on their way to you & yours.

― PinXorchiXoR (Pinkpanther), Friday, 4 March 2005 13:20 (twenty-one years ago)

three weeks pass...

it's strange reading upthread cz so much has changed since this time last year

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

― mark s (mark s), Wednesday, 30 March 2005 17:01 (twenty-one years ago)

Blimey. I don't really quite know what to say, except it sounds unbelievably difficult and I'm wishing you the strength I know that you will need to deal with this. My thoughts are with you.

― Masonic Cathedral (kate), Wednesday, 30 March 2005 17:09 (twenty-one years ago)

What Kate said. Keep your head up, and stay fair - don't let the corrosive atmosphere that this can create wear away too much at your soul/ethic/sense of self/whatever.

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

― Andrew Farrell (afarrell), Wednesday, 30 March 2005 17:22 (twenty-one years ago)

Adding to the good thoughts -- and echoing Andrew's question as well.

― Ned Raggett (Ned), Wednesday, 30 March 2005 17:28 (twenty-one years ago)

andrew i think we are - we have (i hope) just solved the carer problem for the meantime = i go up-country once a month for a weekend, and she does too (ie we alternate fortnightly)... the rest is carers

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)

― mark s (mark s), Wednesday, 30 March 2005 17:34 (twenty-one years ago)

Adding to the good thoughts

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.

― Leon Bluth (Ex Leon), Wednesday, 30 March 2005 17:37 (twenty-one years ago)

What the others said: I hope it gets better and easier for all concerned.

― Martin Skidmore (Martin Skidmore), Wednesday, 30 March 2005 17:58 (twenty-one years ago)

mum back in hospital since tuesday night with a blood clot in her leg and breathing difficulties :(

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?)

― mark s (mark s), Thursday, 7 April 2005 10:02 (twenty-one years ago)

(i am going to try and stay off threads where my v.v.v.bad mood will metastasize, so if you notice me rippin someone's head off, direct me back to this post plz)

― mark s (mark s), Thursday, 7 April 2005 10:05 (twenty-one years ago)

:-(

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

― We Are All Full Of Kate (kate), Thursday, 7 April 2005 10:09 (twenty-one years ago)

best wishes

: (

― RJG (RJG), Thursday, 7 April 2005 10:11 (twenty-one years ago)

all the v.best Mark. I hope yr mum is ok and that you can find a way thru this.

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.

― Dr. C (Dr. C), Thursday, 7 April 2005 10:56 (twenty-one years ago)

sorry abt yr uncle dr c. (and yr dad also)!!

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

― mark s (mark s), Thursday, 7 April 2005 11:04 (twenty-one years ago)

So sorry to hear this, Mark; all the best to you and your family.

― The Ghost of Dan Perry (Dan Perry), Thursday, 7 April 2005 11:05 (twenty-one years ago)

Oh lummy. Will the magazine not let you off early, seeing as it's packing up time? Grah tedious jobs when you need to be elsewhere. Hope your mum is keeping well in herself.

― Liz :x (Liz :x), Thursday, 7 April 2005 11:22 (twenty-one years ago)

not in pressweek liz! it's an iron law of publishing!

― mark s (mark s), Thursday, 7 April 2005 11:38 (twenty-one years ago)

Best wishes for you and yr family Mark.

― lock robster (robster), Thursday, 7 April 2005 11:42 (twenty-one years ago)

What everyone else said - I hope she recovers very quickly.

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.

― Martin Skidmore (Martin Skidmore), Thursday, 7 April 2005 21:19 (twenty-one years ago)

Adding to the many good thoughts, all around. :-(

― Ned Raggett (Ned), Thursday, 7 April 2005 21:22 (twenty-one years ago)

well, not necessarily martin: there's talk of it going on-line (admittedly not very clear-headed talk at the moment) and there's other subbing work needed in the org (catalogues etc), though not so much

but it might be time for me to spread my wings

― mark s (mark s), Thursday, 7 April 2005 21:28 (twenty-one years ago)

take care, mark

good thoughts

― cozen (Cozen), Thursday, 7 April 2005 21:39 (twenty-one years ago)

hi mark. i send hugs and best wishes.

― di, Friday, 8 April 2005 01:58 (twenty-one years ago)

(as a coda that would ordinarily be MILD ANNOYANCE WTF at WORST but is this week able to bid for "last straw" status, my computer at home is suddenly refusing to connect to the internet FOR NO REASON AT ALL gah)

hi di!!

― mark s (mark s), Friday, 8 April 2005 08:29 (twenty-one years ago)

Mark, this all sounds so horrible. I hope you can find the strength to get through this & I hope your mum's condition improves. Best of wishes.

― PinXorchiXoR (Pinkpanther), Friday, 8 April 2005 08:46 (twenty-one years ago)

mom is shitting all over the floors and hasnt been out of the house in a week.

― anthony, Friday, 8 April 2005 09:07 (twenty-one years ago)

mum still being kept in, under observation: they are apparently unsure what is causing the blood clot and nervous of giving her blood-thinning medication (wow, is this still warfarin = rat-poison?)

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)

― mark s (mark s), Saturday, 9 April 2005 12:22 (twenty-one years ago)

yes, still warfarin. My dad is on it to prevent strokes. There's nothing better apparently.

Hang tough, mark!!

― Dr. C (Dr. C), Saturday, 9 April 2005 12:41 (twenty-one years ago)

so did they use it first on rats, then ppl, or the other way round?

― mark s (mark s), Saturday, 9 April 2005 12:48 (twenty-one years ago)

yeah, my stepfather is taking it, too, (and is grossed out that he is taking RAT POISON)

― tokyo nursery school: afternoon session (rosemary), Saturday, 9 April 2005 13:37 (twenty-one years ago)

i would be EXCITED i think!!

― mark s (mark s), Saturday, 9 April 2005 13:42 (twenty-one years ago)

my sister just got off the phone w.the registrar of the chest surgeon currently looking after mum: about half way through the conversation she realised - and he under questioning admitted - that she has now been in a week, but
i. the registrar (and thus possibly his boss) had not yet talked through her case w.the liver specialist who she has been under for all her other procedures (or anyone else who knows her case)
ii. the registrar had rung my sister up w/o actually bothering to familiarise himself w.my mum's casenotes!!

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

― mark s (mark s), Monday, 11 April 2005 16:44 (twenty years ago)

That sounds awful, but it also seems likely that they will now be embarrassed into their best action, so there may be an upside.

― Martin Skidmore (Martin Skidmore), Monday, 11 April 2005 17:42 (twenty years ago)

ok mum much better today: the various departments are now talkin to one another, her medication has been changed, various discomforts much eased, plus she is lucid and knows where she is, and what the date is (she wz v.spaced at the weekend apparently)

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

― mark s (mark s), Tuesday, 12 April 2005 12:57 (twenty years ago)

Good news! Hope chipperness is increased all round.

― Liz :x (Liz :x), Tuesday, 12 April 2005 14:58 (twenty years ago)

That is good news, hopefully things will continue to improve from here.

― Leon WK (Ex Leon), Tuesday, 12 April 2005 15:00 (twenty years ago)

That's terrific Mark!

― Martin Skidmore (Martin Skidmore), Tuesday, 12 April 2005 18:37 (twenty years ago)

:-)

― Ned Raggett (Ned), Tuesday, 12 April 2005 18:37 (twenty years ago)

Hooray!

― Andrew Farrell (afarrell), Tuesday, 12 April 2005 18:55 (twenty years ago)

Sounds like you got rid of one major clot already. Way to go!

― Tracer Hand (tracerhand), Tuesday, 12 April 2005 19:08 (twenty years ago)

Fingers crossed and thinking of you Mark.

― Billy Dods (Billy Dods), Tuesday, 12 April 2005 21:15 (twenty years ago)

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