Written off????

[Tender Face]

.... and advice on my ‘battle plan’ appreciated….

Rather than ‘resurrect’ my original thread, here’s the link for anyone not aware and interested in reading the background….http://www.alzheimers.org.uk/TalkingPoint/discuss/showthread.php?t=4115&highlight=cancer

Today another letter….. (why are we getting letters about stuff I think warrant a consultation when we are offered ‘all clear’ consultations which necessitate huge effort, inconvenience and struggle on mum’s part to attend which warrant no more than a letter?)

‘They’ (those brilliant medics) plan to do nothing, basically….. Their proposal - another scan next February …. See if there‘s any further ‘growth‘ - three scans in six months then six months ‘til a follow-up??? What’s going on? Alarm bells have been rung. Why are they suddenly silenced????

If we (mum and I) want to go to the arranged appointment on 2nd October we can ….. WHAT FOR??? Otherwise it is for ‘Mrs X’s daughter to ring my secretary to arrange a further appointment in February once the scan date is know.”….

So, my current thinking is *I* will attend the scheduled appointment on 2nd October WITHOUT mum and without asking this particular consultant to divulge anything confidential about mum’s health I am not already acutely aware of myself (or indeed haven’t been the one to inform him), I shall ask all the hypothetical questions about why , since I alerted HIM to mum’s ‘memory problems’, her scan results seem to have been analysed from a different viewpoint…

I’m prepared to ‘give up’ in terms of admitting I’m the idiot refusing to recognise I’m not going to have mum forever ….. but I REFUSE to give up on giving her the best quality of life she can have as long as we have it …. but for that I want to understand better ALL her problems and what help I need to deal with them…..

Why do I have just have this feeling… nothing else matters to the (non-mental-health) medics now dementia has set in???

Sorry, rant over. Thanks for listening...

Karen, x

 

[Brucie]

In reality, the medics [along with everyone else] want an easy life and dementia gives nobody that.

As someone else said on TP recently [I paraphrase] they pay most attention to people who jump up and down the most. If one makes them uncomfortable enough, they will get their acts in order.

Good luck with your plan!

Bruce

 

[daughter]

Hi Karen,

I felt that Dad had been written off when they decided to stop his AD medication without even telling us, so I can imagine a little of how you are feeling. It wouldn't be so bad if someone explained the thinking behind it (and if that explanation was satisfactory, of course). Sorry I can't think of anything constructive to say, but good luck with the appointment if you decide to go. {{Hugs}}.

 

[Tender Face]

New Battle Plan....

......must start practising jumping up and down more... (no video clips allowed!!!)

Grrrr!!! I'm just so cross!!!! And yes, I want logic .... in a world where logic just doesn't even seem to exist anymore - and I'm trying to live with that on mum's and my level..... but I hoped for some detached, rational, courteous, informed thinking from the 'professionals' ...... silly me!

Love, Karen, x

 

[Skye]

Karen, you poor thing. Your problems put mine in perspective.

You're such a kind person, I really appreciate reading your comments to people in trouble (including myself).

I know you'll do the best for your Mum. I think you're right to keep the appointment on your own, and demand some answers.

Channel that anger, the adrenaline's good for you. Go for it, and Make them give you some answers.

Love and hugs, Skye

 

[jenniferpa]

Dear Karen

I am a bit ambivalent about this. I know what I think I'd do in this situation, but I have a sneaking suspicion that if the chips were down, my behaviour would be slightly different. For a start, I'm not sure what kind of cancer we're talking about here and what the prognosis would be for an otherwise healthy person. Some cancers can be so slow growing, that for an elderly person, the chances that they will die from something else is very high. I agree, I would want to know exactly what the problem was, what the possible treatments were, both in an ideal situation and for an elderly person, and what, realistically , would happen if nothing were done. In the event that nothing was done, what could be provided in the way of pain control (someone with dementia can't necessarily express pain, and even if they can now, will they be able to do so then?)

I do not think that I would push for surgery (if that was appropriate) but that's primarily because I know that's not what my Mother would want - we discussed this when I had breast cancer. I do think there is a culture in the UK medical establishment that after a certain age, "maintenance" is the watch word, which is distressing to loved ones (and patients). In the US, however, they'll cut you open at the drop of a hat, and go to extreme measures, and I don't think that's appropriate either. I hope I would be more concerned with the quality of my Mother's life, rather than the quantity, but as I said, what I might do and what I would do may well be different things.

However, in your specific situation, if you really think the consultant will actually talk to you (I can envision a situation where, if you get there without your mother, you won't get past the door) I think it's an excellent idea to keep that appointment. You can be considerably more open about scenarios without her there.

Love
Jennifer

 

[Tender Face]

Jennifer, I so appreciate your comments.... I need some straight talking.....!!!!

Mum has 'battled' various cancers for 18 years ..... there's a bit of me (yes, a lot of me) thinks she's not going to go through all that to.... well, you know... the 'horrid bit of me' (as already expressed to one person in PM) who thinks 'Thank God she will be saved from something worse.......' (God, how that must sound to cancer sufferers and their carers) ...but I'm saying it anyway... (and feel OK to say it 'coz I've seen that too...)

Saying it because in all of this, I feel I just want to know what mum, me, my family are up against ..... and realising we ain't gonna get that.... and living with the inevitable and yet unknown is the worst hell. Yup - some struggles in my life - but nothing, nothing, nothing like trying to cope with dementia within the family.....

Skye, thank you, I have spent much of my life trying to 'channel the anger' (against a lot of things!) - I feel it's a very positive and productive force used in the right way ... but I'm losing it.... it's getting slowly chipped away by the despair ..... I just want to know which enemy I am fighting... then I can muster the troops.....

Sorry, feeling pretty helpless and hopeless tonight...

Karen, x

 

[Skye]

Karen, I feel so sad for you. I do understand the despair. You are trying to bear the unbearable, not just or you, but for your Mum.

I don't think anything I say can help you tonight, but just hang on ... hang on. You are compassionate and strong ( sorry, I hate it when people say I'm a strong woman, as if we're not entitled to suffer. I truly don't mean that).

So hang on, try to get some sleep, and maybe tomorrow you'll see you robin.

Take care, hugs, Skye

 

[jenniferpa]

Mum has 'battled' various cancers for 18 years ..... there's a bit of me (yes, a lot of me) thinks she's not going to go through all that to.... well, you know... the 'horrid bit of me' (as already expressed to one person in PM) who thinks 'Thank God she will be saved from something worse.......' (God, how that must sound to cancer sufferers and their carers) ...but I'm saying it anyway... (and feel OK to say it 'coz I've seen that too...)

Although I think most people fear the "Big C", I also think those of us who have seen dementia "up close and personal" can appreciate that there are other things out there, potentially far more terrifying. Apart from anything else, with most cancers, there's a time between diagnosis and major symptoms, which gives the possibility of coming to terms with it, but with dementia it is much more insidious. Anyway, the philosophy of "I think, therefore I am" is deeply ingrained in most of us. To admit of the possibility that we might not be able to think implies a loss of self that most people would fear more than death. Well I do anyway.

This may sound peculiar, or even callous, but with a diagnosis of cancer, you're suddenly in a whole different area of available care and comfort. Palliative care is well establish for cancer patients even while it is almost non-existent for those with dementia. I'm not saying look on the bright side, because there isn't one, but there are more options.

Love
Jennifer

 

[Helena]

Tender Face

You know I reaqlly feel for you in all your predicament but truly while i know you do not want to loose your Mum i honestly think the kindest thing you can do now is to accept Gods will and not put your Mum through anymore

All cancer treatment takes a huge toll on the patient and you will feel even worse if she died during surgury

My sister and I just hope night after night that our Mother will have a massive stroke and not wake up rather than see anymore of the terrible confusion she is going through or cope with calls from concerned neighbours whom we have told over and over that Mothers Doctors know her condition but insist they cannot force her into a home and we all have to wait for a crisis

 

[Tender Face]

Thank you again all and sorry again for my not-so-little rant.

After a night’s (disturbed) sleep… thought it only fair to share my thoughts….. sorry, I know this is going to be a right old ramble…….

Skye, thanks for your compliment but I don’t feel kind at all. In fact I’m totally selfish. Of course, I want what’s best for mum and me and my family (in differing orders at different times)… for one, I want the NHS to exist purely for her just now….

Jennifer, Brucie … on reflection on your comments - yes, a confirmed diagnosis of cancer would ironically make life easier …. (for selfish little me again, and yes, I believe for my mum) - to have a prognosis … to have some better idea of how long I might need to sustain the care, the agony etc etc …. it would help the planning of mum’s care … how much, by whom and when etc……

One of my colleagues at work is helping to care for her terminally ill father (cancer) … refusing some (not all) help being offered by SS and MacMillan etc … given she already has my admiration for being a single parent, and holding down a full-time job I expressed my concern that she still finds some time for herself. Her response… ‘I know, but it’s not going to be for long, is it? So I’ll do it.’

THAT I think is the essence of my soul-searching. How can I be disappointed that mum hasn’t got a confirmed diagnosis and prognosis of something other than dementia????

Helena, thanks for your thoughts … I think after my first post on this and the subsequent replies I was helped to recognise that I would NOT put mum thru’ anything she didn’t need - including even investigations - if any form of subsequent treatment would be likely ruled out anyway - …. (assuming it was right and appropriate to make that choice on her behalf)

…..but at this moment in time, I just have this horrid suspicion that we are being denied even that choice ….. and that makes me cross!!!! How come pre-dementia confirmation, THEY were the ones jumping up and down and insisting on what felt like ‘back-to-back’ scans and now they see fit to ‘leave it’ for six months? My understanding and experience of cancer care is that by acting quickly, there is hope …. or at least by prescribing ‘no action’ the sufferer and carers know where they stand….

S*d, 2nd October …. I’m ringing the consultant’s secretary first thing tomorrow…..

….. so there’s my little ‘angry head’ coming back …..

Love and thanks, everyone…

Karen (TF), x

 

[Amy]

Hiya Karen,
'Sid 2nd? sad 2nd? sud 2nd? .... ' I don't know ...

Get on that phone - you need to KNOW. We can deal with things when we know, it is the uncertainty that is a killer.
Love Helen

 

[Tender Face]

Thanks, Amy.... always did love a word game ..... surprised the bl**d* ??? and *** k*ys?? on this *?*?*? * k*yb**d haven't worn out by now!!!!!

***???? Karen,

 

[Lynne]

So, my current thinking is *I* will attend the scheduled appointment on 2nd October WITHOUT mum and without asking this particular consultant to divulge anything confidential about mum’s health I am not already acutely aware of myself (or indeed haven’t been the one to inform him), I shall ask all the hypothetical questions about why , since I alerted HIM to mum’s ‘memory problems’, her scan results seem to have been analysed from a different viewpoint…

Sorry, rant over. Thanks for listening...

Karen, x

You go girl! Can I lend you the bus fare?

You may have already done this, but I have a letter signed by my Mum which says she gives her authority/permission for personal business (including medical matters) to be discussed fully with me. This seems to relieve medics (& solicitors, and bank managers) of the need to dance around 'confidentiality' and tiptoe around plain speaking.

It's not exactly the best 'alternative' to dementia, but there ARE palliative care systems in place for cancer sufferers, and your Mum is entitled to acess to them, regardless of dementia, IF SHE WILL BENEFIT FROM THEM.