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Old 01-21-2006, 08:33 PM   #21
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My mother's picture

My mother had a professional photographer do her picture about 5 years ago. It surprised both my sister and I as she will normally squeeze a nickel until the buffalo poops in her hand....

Later she confessed that she thought it was AWFUL how most women get their obituaries done with high school portraits... with those awful skinny eyebrows or old fashioned hairdos, and butterfly framed glasses. She's going to have a decent picture, thank you very much.

Of course the other sad and funny part was that she just hated the portraits. If you saw them you'd think she was 60 at most (actually taken when she was almost 80) - but they were a shock to her. She didn't realize she looked that old.

It's VERY difficult to ask... But maybe you DO just have to say, "Mum how long DO you want to live?" Most folks will respond with "I want to live as long as I can get about, enjoy my food and keep my mind clear."

You don't have to be brutal and say well that might be six months then.. but with that statement, you first get the doctor to tell you his/her best guess on how likely ANY agressive treatment will help meet that goal.

Next you, the doctor AND your mom to discuss whether it might actually be better to do a few very mild adjustments to her current medications... go home... forget medical science and enjoy whatever you can enjoy. You aren't going to live forever, but you'll probably do just as well if we DON'T muck about with your insides too much. Good pain management, and good home support will probably do as much good as anything else.

Go not gently into that good night .... makes a lot of sense when you're 30 or 50. At 80+ gentleness is about all we have to offer.

Will be thinking of you and sending you good Karma.

Paula
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Old 01-22-2006, 01:05 AM   #22
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Oh dear...

Well...its Sunday morning, been up all nite, thinkin, kikkin Myself, & jus had so much coffee I feel quite ill... But not2worry (N2W)... Hospital visit did'nt exactly go down 2 well last nite... This here Secret lump has now turned out 2B as big as a tennis ball... Mum also got pains in Her eyes, High blood preasure Slow Heart beat, diabetic N goodness knws what else... & Mum still smiling & insisting there is Nothing wrong with Her, OK then, Y can't She come HOME where She belongs... Oh NO She's far 2 ILL... Yr Mother HAS got 2GO 2 a specialist Hospital 4 Cancer treatment... over 20 miles away... Now that's where it all starts, it's one of those places where the Doc's do ALL the proddin n pokin & fill Her up with drugs until they admit there is Nothing left 2 Do 4 Her, so they stick Her in a home where She ends up being jus like the wallpaper... I think not, so agn, Here We go, another meetin with the so called Know-it-alls... Why they can't leave Her alone...I kn, I kn...If they can make Her live 4 another day, but at what cost, More PAIN, more things She affraid of...tons of drugs that jus make Her freak out, Make us ALL freak out... Her face was pleading last nite, kinda askin us ALL 2 do something, Do WHAT... We jus don't kn what 2 do 4 Her...We wanna help Her, We cant even cuddle Her, She's in so much pain... But She knws We there 4 Her & Love Her... Time is jus an agonisin period...Chris.....
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Old 01-23-2006, 02:48 PM   #23
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Hospice

Chris - find a HOSPICE nurse. Get to a doctor in a lounge or office AWAY from your mother and throw a screaming nelly of a fit. (or just print this out and make him/her read it).

Demand a HOSPICE nurse or doctor be called in for a consultation. Here in the states we actually have people who specialize in "pain management". Insist that your mother will make NO decisions until her pain is under control.

However painful it is, if your mother hasn't been declared incompetent to make her own medical decisions, she can't be misled or left out of any final decisions - but if you are able to pound some sense into the doctors you will get them to see the following:

1) your mum is "eager to please" and is "in awe of anything in a white coat". She will FAIL to consider her own rights and obey any suggestion from a doctor even if it causes her suffering and actually shortens her life

2) your mum is also in denial - she hasn't got the ability to face the fact that she needs to make end of life choices. (You may be able to get her to talk about this as an eventuality IF you and the doctor can convince her that it is a new government regulation that has to be discussed with every patient over 50.... If you have the "living will" concept over there, you might even discuss doing YOURS and hers at the same time.)

3) Her denial is complicated by her being disoriented by being away from her home, by being poked and prodded and questioned by doctors and nurses who are using medical jargon she doesn't even comprehend.

4) She is in PAIN - to the point where it will NEVER be possible to get a lucid thoughtful response from her until that pain is relieved. You don't ask a torture victim to make good choices.
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Old 01-23-2006, 08:17 PM   #24
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Translation from American to British?

Paula is exactly right above, though I fear British Medical Service may have differing perspective on "Hospice Care" than most states in US have adopted...

As difficult as it is for family, Hospice Care means literally that "curing" has been dropped as a cause, and palliative or pain management and caring for the person who is ill and their "well-being" becomes the primary objective.. As such, once Hospice care has been chosen, treatments like radiation, surgeries or chemo-therapy are stopped, and 100% attention is focused on managing pain and the remaining quality of life, time with family, friends, etc. It can be done at home or in a hospice facility in the States, and most forms of "medical insurance" will usually pay for up to 6 months of care, since it is less expensive than the poking and prodding and exotic treatments... Tragically, some facilities wish to continue exotic treatments because they are authorized and profitable, even if pointless...

Sounds like someone in medical service having trouble admitting curing this illness no longer reasonable, and escalation to higher authorities in hospital might help. Our prayers remain with you and family, and good luck!

John McG
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Old 01-26-2006, 12:57 AM   #25
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Thank You ALL...

... Jus 2 let U kn Mom is at HOME 4a few days peace n rest, then She goes away 2 Sheffield 4 a few weeks treatment, why they want 2 make Her suffer more We'll never kn, but I guess they kn best...or do they ?...so once agn,Thank U all 4 Yr kind words & support... THANKS...Chris & Family.....
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Old 01-26-2006, 05:14 AM   #26
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I don't know how things work in the UK; however, as a geriatric RN here in the States, I want to put my 2 cents in here. Your mum doesn't HAVE to go to have treatment is she chooses not to. If she wants to remain at home, get her a HOSPICE nurse to provide pain management and let her live out what time she has left the way she wants with dignity and peace. Can they force her to get treatment over there? I know here we have the right to refuse treatment. Once you are in the hospital you loose some rights, but she's at home so let her make whatever decision SHE WANTS. I hope they can't force her into treatments that will make her last days painful and degrading. Please look in to alternatives for her. I don't know what you may call hospice over there, but surely you have some type of service comparable to what we have here.
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Old 01-26-2006, 09:46 AM   #27
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Old 01-30-2006, 12:36 PM   #28
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Special Unit...

Hi All, jus 2 let U kn Mom has now gone in2 the Special cancer Hospital, 30 miles away from home, She has 2 undergo a lttl surgery 2 drain off her secret lump, as She calls it, at this stage We do not kn what the outcome will B... as She needs a lot of special care & treatment... Thank U ALL 4 Yr support & vry kind words...Chris & Family.....
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Old 01-30-2006, 12:43 PM   #29
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We're all hoping for the best. Hang in there!
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Old 02-04-2006, 12:49 PM   #30
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Weekend off...

... Well We all hoped Mum could get out 4a few days this weekend... but after havin her 4th treatment with radiation, She was unable 2B passed fit enough, Mum was in so much pain that She has now has 2 have Morphine, & the Big-Wigs could not pull a nurse outta thin air in so much a short time, so I guess She is kinda upset 2 say the least, when I saw Her on friday She slept all thro My visit, Bless Her.... I nvr had the Heart 2 wake Her, But My D/D Lisa is goin with Me on Sunday mornin, so that will realy perk Her up... She came home from work with Flowers & Fruit 4 Her...so it should B a good day 4 the pair... If My 'ole PUP would ride in the car, I'yd take Him 2...
She not eatin a lot, & hides Her biscuits in lots of places, but the nurses kn where 2 look... LOL...She gotta eat more, but U can only lead a horse 2 water, next step is the drip feeder...Chris.....
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Old 02-04-2006, 03:40 PM   #31
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Your Mum

We are keeping your mother, you and all of your family in our thoughts. I hope she has palliative care, and is kept as comfortable as possible. Keep reminding the doctors how important it is to take her home. She will do as well there as in hospital, and will have the comfort of her own place, things and kin around her.

Paula
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Old 02-05-2006, 01:02 AM   #32
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Doin our BESTEST...

Hi All... Things R Not lookin 2 good at the moment 4 Mum, it's said that time is a healer...well I don't buy that, not the way I'm hearin things abt Mum... I KN I'm NOT the only person in the world who is goin through this ordeal, or who been there, so I jus wanna say I R Truely SORRY 4 goin on abt it, I kn how others feel now, I feel thier pain 2, I understand thier loss, but 4 Me...it's the " Waitin 4 God " bit that hurts the most, I would'nt let Me Pup suffer... Still Mum is havin a good innings as we say, almost all Her life trouble free healthwise, but life is such a Mystery & Her secrets will Never B unwrapped... So off We go agn in an few hrs time 4 our 65 mile round trip, My 'ole car knws it's ouw way there now, I swear it drives it's self...lol...
Well I truely hope U ALL have a good Week end...Chris.....
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Old 02-22-2006, 02:09 PM   #33
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Mom

Haven't seen an update on your mom in a while. But wanted you to know that all of ya'll are in my prayers. I lost my mom 9 years ago. I know she is in a better place, but I still miss her terribly.
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Old 02-23-2006, 01:15 AM   #34
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Still Fightin

... Sorry abt the delay, We been so busy around here...Mum is Not gettin any better sadly, Her light Radiation treatment programme has almost ended, & sadly it was not much use, but did shrink Her Secret Lump, 4a while... She has 2 have Morphine a few times a day, dependin on how Her pain is... The Doc's R lettin Her home soon, with enough tablets 2 make the M&M factory look like noddy...So She rattles as She hobbles around the Hospital ward, She IS in GOOD Spirits tho, always laughing, tho Her Eyes give it all away, Bless Her, We hope Mum gets home or in2 the Local hospital this weekend, Mum lost abt 1 stone a month now, down fron 15st to 9st. in a 5 months, but is stable 4 the time bein, She still throwin Her food away at the hospital, I cooked Her Dinner on Sunday, She was enjoyin it & almost ate it all... I think it was jus 'cos I was there... I got Her a few treats, U kn, the things She been eatin for years, now She not allowed, well I aint gonna argue with my Mum, am I ???... after all Mother knws best...Sigh !
Well once agn, We thank U ALL 4 Yr concern & wishes & Yr prayers Bless U ALL...Chris.....
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Old 02-23-2006, 08:39 AM   #35
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I guess I've reread about half this thread, until it became too painful. I remember my dad's dying of oat cell carcinoma, and staying home with only brief forays into hospital. And I remember his sending me, ME, out to shop his funeral so he got best value! I was what, about 27 or so? And trying to make arrangements for someone still living! Because he didn't want to put mom through that, and couldn't do it on his own. Had to take back to him the different funeral homes and what they charged for what. Quite an experience. Both for me, AND the funeral directors! There I am bargaining like crazy to get the best price, and then telling them about the live band that would be playing for visitation and services! No, not a string quartet, a ten piece brass band!
And now I am older than he was, and been told I'm stage IV adenocarcinoma. I'm asymptomatic.... no symptoms, no pain, still fully functioning. My odds of being alive in three to five years is much better than most because of the shape I'm in now. I intend to be in the 17% that do that! I'm still planning to be at Moraine View forum rally, and several other things as well!
Today I update my advance directives, my living will, and my will... hasn't been done in twenty years so it is time.
And you know my real fears? Not of dying; we all must die sometime. One of big fears is my only granddughter, a precious four year old, will have memories of a sick old lady, not the real person I am! Will she even recognize me when my long hair is gone and I'm bald? Do I mourn the loss of my hair? Well, I can't say I'm thrilled about that. I've had long hair all my life. Since I know it is going to go... I can control the how and when. Tuesday it goes, cut for Locks of Love, they especially need graying and white hair for the cancer wigs. And mine, at waist length, is definitely long enough! Somebody should get some use from it, eh?
So, on Moday the radition treatment begins. Not to cure me, but to buy time for the next treatment stage. All I can do at this point is buy time for the treatment phase. If I accept no treatment, I'm told it willbe a very nasty three month expectancy. Can't do that to the family, they would not be able to cope with that. Which means I cannot be a hospice client.... if you accept treatment as opposed to pallitive care, or have greater than a 6 month life expectency, they are prohibited from accepting you into their program.
And trust me on this, I have known for at least two months something bad was going on. Its taken two months to get to the point I even had an appointment to see a surgeon for a biopsy, for the medicos to name it, and learn what to expect.
Health cre in America is so screwed up!
don't be afraid to talk with the dying.... they may be waiting for someone to ask! After all, we know you will continue after us, and we don't want to upset you either. Just one caution... we have a couple interesting sayings in our family.... one is Spit it out and we'll sort it out. iow, say what's on your mind and we'll deal with it. The other is; if you can't take the answer, don't ask the question. Which means to be prepared for unexpected answers, not the stock ones!

Elizabeth in Iowa
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Old 02-23-2006, 12:24 PM   #36
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I'm sorry to hear the treatment didn't help, and I'm glad she's coming home, so at least she can be in her own place again for however long she can stay. Let her have her snacks, she should have every chance to enjoy whatever she wants to now.

Take care, Chris and family, we're thinking about you.
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Old 02-23-2006, 12:27 PM   #37
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So Sorry 4U...

... Well here I r, rattlin on abt My poor 'ole Mum, & there so many jus like Her sufferin in silence, hidin away in lonely places... So Cedars Please accept My humble Apology, I feel 4U2, infact I feel 4 ALL who r sufferin, 'cos I think of ALL the worlds MONEY that is WASTED on needless things, things that No-One realy cares abt, things like when U prune Yr Trees, do they feel pain, we can't hear their screams... How thick is a shadow ? & a Million other useless waste of Millions, I think MEDICAL should b given priority, Millions of tax payers cash should B spent on savin lives...I believe that our Schools SHOULD drop certain Non important lessons & make sure ALL it's Students learn, First Aid, Swimming, Cookin & Maths... I 4 one aint 2 concerned who was who in 1149 or or if Spain is near Australia or not, ( Jus hope the pilot knws ), Certain things Must B controled, people try 2 manage & give the best care they can, but sadly carin costs a great deal... & In My opinion, when it comes down 2 the COST of carin, it's a darn shame that society has let it's Government get away with it 4 so long... They want over £65 a DAY 2 look after My Mum at home, My Sister in law, Dianne will do it 4 NOTHING, being a Carer 4 the elderly, 4 the past 27 years...now She IS one Special ANGEL... U don't often come across these special People, I call them Gaurdian Angels, YES I Believe in them, I met one, in Florida of all places...when I totaled the hire van...( Another story )... So Cedar... what can I say 2U... I can't say I kn how U feel, I DON'T, But I'll PRAY 4U, jus as I pray 4 My Mum...Chris.....
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Old 03-06-2006, 01:08 PM   #38
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Home at last...

Well, Mum managed 2 get Herself back home on friday, after bein stuck in hospital since boxin day... not that they given up on Her or sent Her home 4 bein naughty, She still has 2 visit our local hospital twice a week for treatment, Mum has a lovely nurse tend 2 Her everyday, & a house helper comes 4 times a week, but We ALL still do 4 Her... Her little face was a picture, full of delight & She has'nt a care in the world...She's home now, where She wants 2B... there were abt 12 folk in Her livin room on Sunday mornin... guess we'll have 2 get Her a bigger kettle...LOL...
It's realy nice She home now, but it's far from easy 4 Her, She thinks She can b swanin off 2 the shops n stuff... She's so weak She can hardly stand, let alone gad-about all over the place, I'm jus glad She aint got an electric buggy...Iy'd have 2 take the wheels off 2 stop Her usin it...LOL.
Mum still has a long way 2go yet, b4 She gets anywhere near well enough 2 even think abt doin Her beautiful garden... She has 2 to 4 doses of morphine a day now, 2 help Her pains go away... & so many pills She rattles when She moves...Still losin weight 2, & Her secret lump, jus aint a secret anymore, & she can't hide it now, it's like a tennis ball stuffed in Yr pocket, & guess what ?, She named it, 'Ole Lumpy... Well that's all 4 now, except Mum's realy glad She can see Her flowers poppin up all over the place, & showin off thier beautiful colours... Her Garden birds R bein fed once agn, & the lttl squirrel is back swinging on the clothes line also Fatty the one-legged pigeon is stuffin His face... & Her new neighbours r jus fantastic, & do alsorts 4 Her...Chris.....
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Old 03-06-2006, 01:16 PM   #39
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I am so happy to hear your mother is home where she wants to be. If these happen to be her last days, what a wonderful way to spend them. Being out of the hospital certainly does lift the spirits and calm the heart. Everyone wants to be at home. The pain seems to be less and the mind can wonder to better times. The birds and animals make her happy I'm certain. You are a good son, she has raised you well.
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Old 03-06-2006, 01:58 PM   #40
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Chris, that brought a tear to my eye. I'm happy to know she is home. However much time she has left, hopefully she can be at home surrounded by family, friends, and familiar settings. It will probably do more good for her than to be stuck in a hospital. I wish you and your family all the best.
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