Query - How long left?

[lisaw]

Hello, I sent an email to a website that offered to answer questions, but they did not really give an answer at all. I know it is very difficult to as every patient is different, I am going to just paste the email here, if anyone knows can you please respond?

thanks
Here goes - My mum is 57 years old, she has had alzheimers disease for 11 years now, well that is as far back as we can remember the symptoms starting. She has passed the stage of forgetting and being confused. She now cannot do anything, she does not understand anything, she cannot speak and she very rarely responds to her name being called. She needs assistance to walk as she does not seem to know to put one foot in front of the other. She is however eating well and eats solids. The doctor checked her heart, lungs etc and all that is absolutely fine. My question is what happens from here? What other changes in her can happen? It does not seem to be able to get worse now. It is at it's worst. I know eventually we will probably have to puree her food but what else happens when it comes to this stage? What else happens before she dies? Is there anyway of us knowing that her time is near?

 

[Chesca]

Dear Lisa

The reason you can't get the answers you want is because nobody knows - every case is as individual as is its sufferer..........and for some people what may be a cruel reality is not for their today. There is information available that may answer some of your questions and I have sent you a private message. Hope it is of some small help.

The only certainty with AD is that you can't control it - it calls the shots, each one just a little sharper than the last.

Thinking of you, take care
Chesca

 

[Sheila]

Dear Lisa, Chesca is right, every case will be different. However, basically, unless another illness takes a sufferer off first, the clinical scenario is that slowly they revert to how they were at the beginning of their life.This varies from person to person in how long it takes.What is called the feotal position, needing constant care, feeding and all personal care. Sorry if that is hard for some of us to take, it was for me in the beginning, but it is how it is unfortunately. Very often a chest infection or other illness, (my mum broke her hip and never really got over that) will cause the inevitable. I know some here will find it hard, but I don't think it does any favours in the long run if we who are further along the journey don't answer truthfully the concerns of others. Thinking of you and of everyone who shares this nightmare journey, love She. XX

 

[susan]

Dear lisa
What does one say - i agree totally with Sheila, who has been where all of us are heading and i feel we all need to talk about it - though i don't for one minute think it makes the journey any easier!
My dad has been in the foetal stage for about a year now, 8 weeks ago he fell out of his dining chair and cracked the cup of his hip - no treatment, he has had several turns which we beleive to be mini strokes and still he keeps going.
We wait to see what he throws at us next to keep us on our toes - sounds as if i don't care - not true - love him dearly - but oh boy he does nothing for my mum and sisters sanity!!
It's like a roller coaster without the ups!!
I keep my sanity by visiting, making sure he's comfy and giving him cuddles. I take flowers for his room - a year ago he knew they were there , now he rarely opens his eyes - but i feel guilty if i don't take them!
Chin up, keep smiling and vent your frustrations on TP.
I had a very down spell 2 weeks ago but am more positive at the moment , just gets you in waves.
Take care, keep in touch Sue

 

[Norman]

Dear Lisa
how long is a piece of string,Chesca is quite right ,you didn't get any answer because no one can give one.
We are all travelling different roads and provided no other illness intervenes we will arrive at the same sad detination.
day by day Lisa
thinking of you
Norman

 

[connie]

Dear Lisa, no answers, but everyone of us on TP will be thinking about you. As Norman said, it is a road we must all travel. We just have to try to remember our loved ones as they were, at the height of their lives, and try to hold on to that.

Thinking of you, and will add you to my prayer list - must confess that sometimes I doze off before I get to the end, but I do try. I feel we are all in this together. Love Connie

 

[Chesca]

Lisa, forgive me if I'm talking about you in the third person, but there is a reason...............

I think Lisa's fundamental aim is to be there at the right time for her and her family. She has to get to Trinidad and in so trying to do the right thing for every possible right reason and because of the vagaries of AD she is caught up in the awfulness of the what-if scenario. On the purely commercial side of things, what Lisa needs is a flight at very short notice. Does anybody know if this is possible to arrange without breaking the bank? A sort of semi-permanent stand-by air ticket?

Just a shot in the dark

Chesca

 

[Sheila]

Oh Ches, how awful, Lisa, I really feel for you but don't have a clue about flights etc. and anyway as we have already established, how long is a piece of string? All you can do is your best my love, thinking of you, love She. XX