Immortal words

Norrms

Registered User
Feb 19, 2009
5,350
Torquay Devon
Those Immortal words
“Nothing More Can Be DONE,

Yesterday I saw my consultant, yesterday I poured my heart out to him and Jan my Community Phcych Nurse, yesterday I asked for more help for Elaine,

“Yesterday, I admitted I was getting worse”

Those are words I thought I would never thought I would ever hear leaving my lips. Yesterday was such a day of mixed emotions as I almost shouted at them I would NEVER be beaten by this horrific Disease!! And yet, in gentle tones I begged for more to be done for Elaine to help her and I also asked, what was a LIFETIME FIRST for me, I asked for more medication. Only to be told that I was at the limit for Ebixa Intake, and also Exelon followed by the immortal words

“On the medication front, there is nothing more that can be done!!!”

It was like a thunderbolt from the blue, my heart sank so far and I almost felt as if my fight was ebbing away from me, seeping out of every pore. I have always thought there would be more medication to come, more that could be done, but NO.

This was swiftly followed up by “But there are medications that are being tested and MIGHT be available in a few years. I believed what they said, even though part of me did think they were just saying this to make me feel a little better because of the look of absolute desperation on my face. I have been fighting Dementia for 5 years now since being diagnosed and I am nobody’s fool. I lost both my father and wonderful grandmother to this disease so I am fully aware and at peace with my fate unless they find a cure, but that doesn`t help in the slightest when your told you are at the limit of your medication and its in the lap of the Gods from now on.
As far as the medication to keep me well is, I am at the end of the line! There, I’ve said it!!!!! BUT, and as you know there is always a very big BUT with me !! Does this mean I am giving up? Does this mean I will just ACCEPT my fate and fade away and await my ending?

WHAT DO YOU THINK!!!!

Like a boxer, I may have lost this round, but there is still a fight to fight, there are still many more rounds to go, and whilst I have hope in my heart and breath in my body, words at my fingertips and new ideas in my mind I will never giver give up!!
That’s a promise!!
Best wishes, Norrms and family xxxxxxxxxxx
 

jan.s

Registered User
Sep 20, 2011
7,352
67
Dear Norms, I am so sorry your appointment didn't go well. I don't know what else I can say. I do understand how you must feel, fortunately my husband was blissfully unaware of the deteriorations.

Sending you my love, respect and a hug!! :D

Jan x
 

Necion

Registered User
Sep 26, 2010
1,364
Aberdeenshire,Scotland
Norrms, you're still our Star..... we know you will continue to fight.
You, Elaine & your family are a real inspiration to us all.

Love n hugs to you all, Necion. xx
 

Sue J

Registered User
Dec 9, 2009
8,035
Dear Norms

“Nothing More Can Be DONE,
I am sorry to read this and how hard it is for you.

You also asked,

WHAT DO YOU THINK!!!!
I think Norms has still got a lot more to do and he will keep doing it. Keep going Norms.

love
Sue
 

NeverGiveUp

Registered User
May 17, 2011
1,035
Norrms

NEVER EVER GIVE UP

I have been told so many times over the last few years to give up on my mum, I have lost count of the times it has been said, I haven't won too many friends on our voyage, but do I care? No, I bloody well do not!!!!

We have fought SS, hospital aquired Cdiff - 3 lots, each time being re-infected by THAT place, I even dealt with lot No3 at home because it was obvious she would die otherwise, doctors thought I was mad for saying she wasn't ready to go, she is still here years later. I have faced a hospital cleaning acompany at a meeting where they were boasting about their superior cleaning methods, a ball which was already starting to roll speeded up after that.

Later they took her into hospital, drugging her against our wishes, I fought their IMCAs, I fought the hospital, we got mum home and off the drugs, by 'co-incidence' all patients drugs including mums were reduced after I started the ball rolling.

I made lots of noise about hospital aquired injuries and things happening to others there. I am still fighting that one. I am now fighting allegations that I am an abuser, I will fight that one too.

I've been told my mum is a lost cause, I still fight, if she is a lost cause, why can she still make choices about things? Her mind wobbles, our life is very difficult - but she IS STILL THERE. I'm shouting this, I will keep shouting.

Norrms DO NOT GIVE UP.

My mum is in her 90s, she is a fighter, you are a fighter, you aren't lost yet. How do you know that doctor is right? I can't remember how many doctors have been wrong about aspects of my family's health.

You can still string sentences together, you are brave, you might even bash this evil disease into the ground. I think demetia depression is the killer, it saps the fight out of you, never mind everything else. Depression is to do with state of mind, dementia is the mind - I think there is a connection to survival.

Hang in there.
 

Barry

Registered User
Oct 14, 2006
1,898
73
Indonesia
Your not alone!

Hi Norrms

Believe me when I say that I know exactly how you must feel as I’ve been told the same thing with all my medications and not only that there’s never and never will be any support help for my dear wife Sumi, neither do I have the benefit of having any support from a specialist community nurse to visit the house and even though I’ve admitted to my doctor and on TP that I know that my condition has deteriorated dramatically since my own fight started over 8 years ago as I’ve said many times Sumi and I are in a totally go it alone situation “BUT” even knowing that I’m not giving up on my own fight and still have to “Try” and be as supportive as I can for Sumi, I’ve also been told about the possibilities of new drugs in the future but that future is a very long road away “YET” I still keep the faith and my faith in god…
Barry
 

Countryboy

Registered User
Mar 17, 2005
1,431
Cornwall
Hi Barry I agree just like you I’m in same situation similar problems almost 14 years of dementia for me now we just got to battle through it at least we can still write our own replies some better than others and maybe we won’t in the future not much point in worrying about that what will be will be

yes were all trying to fight the illness
cheers Mate
Tony
 
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Starvin

Registered User
Jan 8, 2013
170
N.Wales
I know its rubbish ,but you've got to look forward . I've got emphysema ,no cure just drugs that make you more comfortable and now vascular dementia and no drugs available to me cos of my chest . You have my support .
 

benny

Registered User
Dec 7, 2009
290
Central Coast NSW
I have just got back onto TP and have been wondering how you have been Norms! So sorry for the result you got, the courage you show and the inspiration you give Norms is ENOURMAS and we need you to keep that up Norms, You have given so much to the sufferer's and carer's of this disease, it's unbeleivable! you deserve to get the very best out of life while you can and I hope thats what you will do. We all love you and thank you for the insight of this disease that you AND Barry give us Keep on soldiering on both of you!!!! Cheers Robyn