• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Mixed Feelings

dmc

Registered User
Mar 13, 2006
1,157
Hi everyone
At the moment, i am somewhat confused, at least i think thats what im feeling, as a few of you may know by my other numerous threads, the consultant gave my mum a life expectancy of 12 months last february, at a meeting we had in june he said it was looking like more september to christmas which is now.
At a meeting we had with him yesterday his words were "i thought she'd be dead by now"
instead it seems like her decline has stopped? and is now quite level and she could go on for much longer than they thought, now i dont know what to think im so bloody (sorry) angry at the consultant for making us go through the last 8 months thinking she was nearing the end, im sad becouse it means she's going to have to suffer longer which i feel so guilty for thinking and not only is she going to suffer longer so are we the family which makes me feel so bloody (sorry again) selfish.
i feel so absolutly torn in two so pleased im not going to lose her so soon but so sad that her suffering is going to be longer.
I know the consultant was only using the information he had at the time my mum was admitted and i shouldnt really be angry at him but he is the second doctor to tell me my mum was going to die the first when she had her heart attack.
but she is stubborn and i dont think she'l go till she's good and ready, will keep you informed (when i get the chance):rolleyes:
hope your all "coping" ok
take care all xxx
 

dmc

Registered User
Mar 13, 2006
1,157
hello tina
thanks for that, yes i do remember your posts about your great aunt quite clearly, i can appreciate what you must have been feeling then,
and what you must be feeling now, cant believe its been ten weeks what spirit your aunt must possess,
love to her and your uncle
i will get my head around this, just like all the other times i'll just have to
approach it from another angle!!
i think normans motto is the most used one on TP but its so true "day by day"
thanks norman x
 

dmc

Registered User
Mar 13, 2006
1,157
hi tina

no you didnt sound patronising at all and you had to tell your story to get your point across, for which im gratefull believe me.
any sort of advice and help is greatfully recieved and i am forever gratefull to all who bother to reply to anything i might find is bothering me,
its good to know there are others who are prepared to share their stories to help thankyou for your good advice xxx
take care xx
 

Lila13

Registered User
Feb 24, 2006
1,342
I'm just remembering a friend who was visiting her sister in hospital, a doctor had warned them she had only two weeks left. Two weeks later the sister was dressing herself up and inviting the doctor to go to a disco with her.

I seem to have heard it so many times, the doctor said he only had 6 months, he's a walking miracle, etc.

I suppose there is a lot of pressure on doctors to pretend to know everything. I'd be more inclined to trust a doctor who admits ignorance.


Lila
 

alex

Registered User
Apr 10, 2006
1,665
Hiya Donna

I'm pleased your mum seems to be o.k. at the moment.

I know how you feel with the roller coaster of emotions you must be feeling........you prepare yourself for the worse and it does not happen, i had that every day for months and it really cuts you to shreds........you feel emotionally drained..........and yes... angry!!!!! Until the medics almost feel like your enemy and you doubt everything they say.

At least you have made the most of the last months and you might not have if you were not given a time limit.
As you say, your mum will call time when she's ready...........she's just not ready yet..............maybe she's giving you more time to adjust.

Love Alex x
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Yes dementia is not like cancer , still I think it was wrong that the doctor told you that your mother was going to die in 8 mouths time, Like Norman said they are not physic , so I say they should not be so Arrogant in telling you that and should be more considerate to you and your family emotion, sue them I say , but its not worth it.

What can you learn from this , is don’t listen to the doctor in how long your mum got left, look to the future just enjoying what time you have left with your mother, take each day as it come and enjoy
 
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nicetotalk

Registered User
Sep 22, 2006
155
stretford
Just been reading about doctors telling loved ones how long they think they have.
When my mum was first diagnozed the doctor told my dad, 18 months, my dad said is that when the alzheimers will get bad the doctors reply no 18 months max to live. She went 8 years. Then after 2 years another doctor said its not looking good not long left, again she went another 6 years. This illness is clearly one that no one can realy put a time scale on it.

I dont think doctors should give a life expectency on alzheimers sufferers iam sure loved ones will ask how long but no one is for certain how long someone suffers from this awful illness.

kathy
 

dmc

Registered User
Mar 13, 2006
1,157
hi everyone

thanks all for your replies, im afraid im still a bit mixed up as to what im feeling i keep playing the meeting over in my head with the consultant saying she's got twelve months max,
exactly the same as i did when the 1st consultant told us she wouldnt last the night and would be severly brain damaged after her heart attack,
i just keep thinking why do they keep putting us through this? once was bad enough twice is just to much
I made the decision at the time not to tell my two sons the outcome untill i thought they needed to know, im so glad i held off as mike had a carefree holiday without worrying about his nan and as it turns out now it would have been un-nessesary.
I really hope she proves them wrong but the strain my dad is under is putting his health at risk,
next meeting they call im going to tell them to get stuffed:rolleyes:
take care everyone xx
 

Margarita

Registered User
Feb 17, 2006
10,824
london
More good wishes comeing your way .As a thought has occurred to me , I love to be a fly on the wall when you see the consultant xxx