Always get more than one opinion for the really important things!

jc141265

Registered User
Sep 16, 2005
836
45
Australia
Some of you may not have read my post yesterday about the 3 choices my family were asked to make with regards to care. I have started a new thread today because I don't want this experience to be missed by others because I think it really highlights that you have to always be aware that you are not receiving the full story from doctors, or the doctors themselves may not be considering the situation properly when they give you your options...
Yesterday my family was given 3 choices to make by the doctors, to recap:
Dad's (63yrs of age, early onset dementia) taken a turn for the worst, an infection he had when he was living in the old folks home we discovered (after moving him back home) was a nasty chest infection.
Thought we got that sorted last week, when he was put in hospital and had a drain put into his chest and was given super you beaut antibiotics...he was really coming along well...but between yesterday and today, its been found that he has other fluid on his lungs, and basically the speech pathologist has deemed him Nil by mouth as she believes he is swallowing his food into his lungs...and that this will kill him...
Anyways the hospital has given us three options:
1. Stop treatment and he will die probably in a week or so, as he won't be getting any food,fluids and antibiotics;
2. Keep on with the current treatment and he will die within a month or so in their estimation because again he won't be getting much real food;
3. Send him in for an operation (where the risks are high that the anasethetic may kill him because of the
Well that determination had me bawling my eyes out, for the 700th time in the last 10yrs feeling like this was it, we really were going to lose him this time...whole family was distraught...
But today, Mum goes to the hospital ready to tell them we were going with Option 3...and the doctor (the one who she had to go to regarding setting things up for the operation) gave us a fourth option.
Option 4:
Consider Dad as man, not a swallowing machine, remove the nil by mouth orders given by the speech pathologist and just keep caring for him as we always have been. The doctor told us he may or may not get over this current infection, it is quite possible that he could contract pneumonia and that will kill him, because of the problem where he may swallow things into his lungs instead of his stomach, but he possibly could beat this current infection and if we look after his oral care (which the home had not been doing) to reduce the risks of bacterial infection, he may carry on for quite some time yet as he has been for the last few years anyways.
What a bloody relief! This 4th option although not much prettier sits so much better with us.
The right to die living is what we want for Dad...we've always been of that opinion. We'd far rather he die from living life than live where all the pleasures in life are taken away because he's too fragile to handle them. Thats also why we decided to take him out of the home, (not an option for everyone - sometimes care at home is just too hard) because we wanted him to be around family, be in a fresh smelling house, with love, noise, laughter and life around him.
I can't believe there was a fourth option and nobody mentioned it to us yesterday! What if this doctor had been on leave and we didn't know there was a fourth option? What if he had had another doctor who also followed the same beliefs as yesterday's doctors??
I truly want to give today's doctor the biggest bear hug there ever was!!!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,347
Kent
Thank you Nat. I think the fourth option is what most of us would want.

I have known occasions of many people dying post operatively, and relatives wishing they hadn`t had invasive surgery, but had been left to live or die in peace.

I wish your father well.

Love xx
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Oh Nat, that must be such a relief for you. This makes so much sense:

Consider Dad as man, not a swallowing machine
It removes the debate over whether to prolong life or hasten death, and gives your dad the dignity of living or dying naturally.

Definitely the best option. I hope that with his tremendous love of life he manages to overcome this infection. At least you will have the comfort of knowing that you gave him the chance.

With love and very best wishes,
 

ROSEANN

Registered User
Oct 1, 2006
909
71
staffordshire
Dear Nat
I am so pleased for you that you had that fourth option, and I so like the way you put things at the end of your post about taking your Dad home to a fresh smelling house with love and laughter around him.
I think your Dad is very lucky to have you all and I wish you all the best in the future.
Roseann
 

Taffy

Registered User
Apr 15, 2007
1,314
Dear Nat,
I agree with the fourth option. Last November mum seen a speech pathologist because of swallowing problems, food getting caught and after fluids mum would cough. Mum did have pneumonia many months before which they expected was caused through fluids going into her lungs.
Fluid thickeners were ordered and food was to be pureed. On a separate issue the dementia nurse came to the house and on her review she told me to stop the thickeners and puree and her belief was WHY WHY WHY ! let her enjoy her food as she likes it, enough has been robbed of her, let nature take it's course.
Your dad is blessed, that as a family you are pulling together to enable your dad to be at home. I hope all goes well. Regards Taffy.
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Dear Nat, sorry that you and family are faced with such decisions.
For my part I think you are definitely going the right way.
Consider Dad as man
Think your qute should be high up there on any patients care plan.

Take care now. Love Connie
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Jo, thank you so much for that attachment. I've skimmed through it quickly online, and have saved it. I'll print it out when I get to my PC.

As you can imagine, it's of great interest to me too at this stage, though quite painful to read.

Love and hugs,
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
From me, too, thanks!

In my opinion the UK Alzheimer's Society would do well to gain permission to copy and customise it for folks over here.

Outstanding document!
 

zonkjonk

Registered User
Mar 1, 2007
290
Melbourne, Australia
I found this document when I was in the throes of ordering a medical directive for my mum to have palliative care only.
It was the most helpful thing I found so I saved it.

Yes I finally fired up the camera,when we got our new puppy and as DH and I went out last sat night, I got my son to take our piccie.
Last picture that I had of me was about 3 years ago :)
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Nat so please for you and your family and for your father of course ...for the 4 th choice .

was surprised also please to read that your father at home now, love the way you put it
because we wanted him to be around family, be in a fresh smelling house, with love, noise, laughter and life around him.
 

gigi

Registered User
Nov 16, 2007
7,788
66
East Midlands
Can I ask? Is swallowing food into lungs something that AD sufferers do? I probably sound naive about this but have noticed over the last few months Eric sometimes "swallows" the wrong way and coughs a lot. Now he's obviously not too well-has an awful cough which when it starts goes on for ever-but eating and drinking normally-but not moving much(he's been like that for the last few weeks) I've been worried about his lack of mobility/lethargy which doesn't help his chest-but am interested to hear about this-I just wasn't aware it was something I should look for...
 

Libby

Registered User
May 20, 2006
625
62
North East
Hi Nat

'What if' indeed - I'm so glad that you were given the 4th option, but I think it's shocking that the 4th choice wasn't given to you at the same time as the others. We rely so much on Doctors to give us all the facts. Sometimes, I think they just tell us what they think is best - not what's best for the patient and family

Thinking of you all.

Libs
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Hi gigi

Everyone's different of course, but yes, some people will have swallowing difficulties relatively early in the course of the disease. I imagine it depends in exactly where the tangles and plaques are. When he coughs, he doesn't have foul smelling sputum does he? Because that's a hallmark sign of a lung abscess which tends to be caused by aspirating food or drink.
 

gigi

Registered User
Nov 16, 2007
7,788
66
East Midlands
Thanks Jennifer. He is "coughing up" but swallows it again! I know when I make his bed in the morning there's a strange smell and I have to change his pillow every other day because he leaks out of his mouth overnight. He won't tell me anything-says he's ok. Thinks if I take him to the doctor they'll put him in hospital! His brother died 4 years ago from cancer and he seems to think this is going to happen to him. Have said maybe all he needs is some antibiotics but he's not happy with that. He doesn't actually have a temperature but a cough that -when it starts-goes on and on. He does smoke-but very little these days as he falls asleep a lot. I know i ought to get a chest x-ray-but that will put him under a lot of stress. Have checked his hankies(the things we have to do!)and nothing significant there-I know if he was coughing up green sputum he'd have an infection. Will keep my eye on him-thanks for the info. you know-we get support and help from CPN's etc-but there is so much we don't know re day to day living that we are left to discover for ourselves-and a lot of people don't have access to this. Best wishes Gigi