severe alzheimers

[Karen Ann]

Hi there,
I am new and not really sure how this works but here goes.
I am English but am living abroad, I live with my husband, 10 year old daughter and mother in Law.
My mother in law has severe Alzheimers (stage 7) and as we are in Middle east we are lucky enough to be able to afford 2 full time nurses (one for day and one for night) which would never have been possible had we still been living in London.
She has showed signs of this disease for more than 10 years now and now she is 80. she was Diagnosed 5 years ago when she was in stage 5 with severe hallucinations etc.
In the last year shes gone from stage 5-7 and become completely (gone) doesn't understand anything and can't walk or speak a proper sentence, doesn't recognise any of us and is in a nappy.
About a month ago she developed a bed blister and had to have it removed and now daily stitched up. (It was 3 inches wide and an inch deep) since then she has become even worse, been on and off the drip and for 3 weeks lost the ability to swallow (the doctor says that her throat has closed up and needs the tube in her nose for feeding etc)
What I really want to know is how much longer will this last as she is suffering so much, crying the whole night for people that died 40 years ago. Can't sand the pain of the blister being stiched up. and I just know If she knew she was in this situation she would never want to live.
Our home is full of tension, We are either crying or screaming at each other, it seems my 10 year old daughter Arianne is coping better than either my husband or I.
Thanks in advance
Karen

 

[angela.robinson]

Hi Karen ,my Husband Was In This State A Few Weeks Before He Died ,but He Also Was Having Mini Strokes I Did Not Want Him Drip Feeding ,and He Was Kept Comfortable Till He Died It Makes You Wonder How Much Suffering A Body Can Take ,ihave Not Heard Of Set Stages ,but It Sounds Like Mother In Law Is In The Last Stages .have You Read The Thread Pathway By Magic ,it May Be Helpfull When The Time Is Near .i Hope I Am Not Speaking Out Of Turn Here ,but It Did Help Me When I Read It ,stay Strong.angela

 

[Norman]

Hi Karen
have you asked the Dr how long he/she thinks Mum in Law can go on like this?
I would think they are the ones to ask.
How where the stages that you mention defined?
Best wishes
Norman

 

[Sandy]

Hi Norman,

In America Alzheimers is defined by Stages, ranging from 1 to 7. You can read more about this system on the Alzheimer's Association web site:

http://www.alz.org/aboutad/stages.asp

These seem to relate fairly well to the early/mid/late stages used in the UK. I don't know how widely they are used in other countries.

Take care,

Sandy

 

[Sheila]

Dear Karen, how awful for you all. You feel so helpless don't you. I agree with Norman, a chat with the doctor would be a good idea. You don't say how old your Mum in Law is, but from what you describe, it does sound as though she is pretty far along. I do hope the doctor can ease your worries and her suffering. Love She. XX

 

[Sandy]

Hi Karen,

As the others have said already, a very open discussion with your mother-in-law's doctor. I would let him or her know your concerns about your mother-in-law's quality of life, her levels of pain and what pain relief can be arranged.

The Alzheimer's Society has a very good Fact Sheet on the later stages of AD which you can find here: http://www.alzheimers.org.uk/Facts_about_dementia/How_dementia_progresses/info_later.htm

Another interesting piece of information from the Alzheimer's Society is a position paper on palliative care and AD:
http://www.alzheimers.org.uk/News_and_campaigns/Policy_Watch/palliativecare.htm

This last document might help put your mind at ease regarding how far to go in terms of interventions such as tube feeding.

Take care and keep posting,

Sandy

 

[Karen Ann]

Thank you all for your replies

I would first like to say thankyou so much for all your replies.
My Mother in law is 80. And I am from Hertforshire, but live at present in Iran.
My husband and of course Mother in Law are Iranians.
The law here is to keep the patient alive (No matter what) Its like something they swear to when recieving the PHD as a medical doctor.
Although the doctors English is reasonable good , He doesn't answer too many questions to me directly as he can see that my husband is getting frustrated with all the questions I ask!! He says I just ask the same things over and over again,
Perhaps I am getting alzheimers at 37
Any way yes stage 1-7 is how the Disease is defined all over the world (Not just USA) but everywhere that I have enquired, I just presumed UK would be the same.
As for how long she may live he smiles and says I am not god!
and one thing he says in farsi and my husband translates better for me when hes left is :-
the body is like a car when its old you fix the exhaust and then the brakes go , then you fix the steering alignment and then you get a blow out etc.
He says when its bancrupt its bancrupt. Even When we have fixed her bed blister she is so week she is already showing signs that her kidneys are not functioning well, for example no pee for 3 days and then 2 litre all at once!!
Same with No 2!!
Oh well I just can't stand the suffering and wish her to no longer be in this state of limbo, I want for her to just go to sleep and not wake up, and so does my husband and daughter. We don't want to see her suffer and cry for the dead people any more.
Thanks Everyone
Karen

 

[Brucie]

You say He doesn't answer too many questions to me directly and He says I just ask the same things over and over again

I'd make a guess and reckon the two things might be linked?

If you don't get a satisfactory reply, the natural thing is to ask again!

Perhaps I am getting alzheimers at 37

I'd reckon not. You are just frustrated by the dementia, and by not getting any replies. The status of a woman there may add to the challenges, I reckon?

Believe in yourself!

 

[Karen Ann]

thanks bruce

Well the doctor not answering the questions to e directly so much might be because of the language difference, His english I would say is just a little better than my Farsi, which is only (Just getting by, standard)
Asking too many questions over and over, well thats not from the doctor, thats from both my husband and daughter!
Alzheimers at 37! well that was like a bit of light humor!
Thanks
karen

 

[Brucie]

Hi Karen

not wishing to make you worry further, but Alzheimer's has been diagnosed in people a lot, lot younger than you are. It was originally defined as being the young person's dementia, many moons ago.

However, we all have periods when we forget things, repeat things, particularly when we have been with someone who does have dementia. We have to repeat to them, so we do it after we leave them.

...it does not mean we have it too!!!!!!!

 

[Lulu]

Stages

I think it was Sandy who recently added a link about the stages of Alzheimer's, from 1-7, which I checked out myself from the link she added to her post. I found this method easier to understand and could relate it to what is happening with Mum.