• 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.

HELP -- Distraught !!

Guppy

Registered User
Aug 6, 2007
1
FIFE
Hi all,

My name is Andy, my father has been diagnosed with Altzhiemer's. I have read as much as i can and i understand the disease to a degree.

I have accepted that it is terminal, and i have explained all what i have learned from this great site to my mother, who is as you can understand distraught.

My father is 69 yrs old and at the moment is only forgetting once in a while, however hi writing skills have deteriorated to the extent that is writing is non - ledgable.

My mother keeps asked roughly how long he has to live as she would like to give him the best she can while he can remember out of life, so far i have been unable to acertain roughly how long this disease takes before it overcome the host.

Please, i would appreciate if anyone could give me some idea as to how long it all lasts so that i can help my mother.

regards
 

Cate

Registered User
Jul 2, 2006
1,370
Newport, Gwent
Hi Andy

So very sorry that your dad has had the diagnosis of AD.

Sadly there are no 'rules' in terms of deterioration or life expectancy. Your dad may be affected by some of the behaviours/difficulties you have no doubt read about; there is no way of telling. It’s very much day by day, month by month, year by year.

There are some practicalities that you can discuss with your parents, such as Enduring Power of Attorney.

My advice would be for them to live their lives as normally as possible. Try not to look too far into the future. It may well be years before you see any real marked deterioration in your dad, so enjoy life as much as you all can.

It’s human nature to ‘watch’ for any little sign, especially in the early days, my advice would be, as much as you can, don’t.

Keep posting, and keep asking questions as and when you need to.

Best wishes

Cate
 
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Brucie

Registered User
Jan 31, 2004
12,413
near London
Hi Andy, and welcome to Talking Point.

I'm afraid you ask a question that is almost impossible to answer helpfully.

The duration of dementia depends on all sorts of things - the type of dementia, the age of the person, their health history, their physical and mental shape, the stage of the dementia they are at, the care they receive.

Some of us have been caring for nearly 20 years, while others find that the process is very much shorter.
However, since you ask a simpler question to answer as well...
she would like to give him the best she can while he can remember out of life
- the reply to that is to make each day count.

Approach the whole thing a step at a time, day by day. Wring the most you can out of each day.

... and take care of yourselves as well as your Dad.
 

Lucille

Registered User
Sep 10, 2005
542
Hello Andy

Welcome to TP. So sorry to hear about your dad.

As Bruce and Cate have said, there is nothing precise about this disease. Each person is different.

I have found that taking it a day at a time helps me get through. Mum, I think, also takes this approach (but I guess this has been her mantra all her life) ... always look on the bright side! Of course, now there's an element in there which is the disease which makes her refuse to accept there's anything wrong!

It's so difficult. Just support your mum as best you can so she can help your dad; deal with any practical issues - like the EPA that Cate mentioned. Enlist some support from the professionals and post here again and let us know how you are ... or to sound off!

With best wishes.
 

Kathleen

Registered User
Mar 12, 2005
639
65
West Sussex
Hello Andy

The question of how long your Dad has to live is impossible to answer, really.

It is dependant on too many variables, with AZ each case seems unique.

Some deteriorate very slowly, others fairly rapidly, others in steps........stable for a while, then a drop before stabilising again.

With Mum, now 76 years old.......7 years from when her closest family noticed subtle changes we now know were AZ........ it is a slow but steady deterioration, she has lost the ability to do so many things, but by focusing on what still makes her happy, she has a good quality of life still.

Take it slowly and try to focus on the positives, it won't alter the course of the disease, but will make it easier to cope with.

Best Wishes

Kathleen
xx
 

Nell

Registered User
Aug 9, 2005
1,170
68
Australia
Dear Andy,
I'm so sorry to hear your Dad has been diagnosed with this horrible illness. As others have said, predicting life expectancy is impossible to do - so many factors to consider.

Also, each person has his or her own patterns of decline - some are affected in one area more than another. My Mum (for example) is losing her mobility but can still act quite sensibly much of the time. Her short term memory and her logic and reasoning skills are poor, but her speech has not deteriorated at all - apart from forgetting words sometimes.

Others find language goes early, but are still quite physically fit and mobile. Some have problems with "seeing" or "hearing" things that are not there - and others do not have this problem. Some have periods of confusion mixed with periods of being lucid - others are confused most of the time.

As one of our TP members so wisely says "When you've seen one person with dementia, you've seen one person with dementia".

My advice to you and your Mum (and others in the family if it applies) is to recognise from the onset (now) that the sufferer cannot help what he is thinking, believing, etc. Many people (probably all of us at times) become very frustrated because of the person's constant need to repeat what has been said already, to ask the same questions over and over, to find "answers" to problems that we know are patently false (but which seem reasonable to the sufferer). For example: when my Mum couldn't find her sewing box, she thought her grandsons had taken it. :) When she had trouble operating a microwave, she said she wouldn't use it because it made the porridge too salty!! :eek:

Whilst ever we believe that the person has control or choice over what they say, think or believe, we can be very frustrated, hurt, upset and feel they are taking advantage of us. If you can tell yourself that it is the disease, not the person, it can help in your daily dealings.

I must say though "easier said than done"!! :)

If the main caring is by your Mum, the very best thing you can do is to support her. Give her a break from time to time when you can. It might sound obvious, but there are many peple even here on TP who carry the burden of caring by themselves because family are "too busy" to help.

TP is a wonderful source of information and support. You will learn a great deal from the wonderful people on this site, and it might be a good tool for your Mum too . . . .?? Wishing you and your Mum the very best in this journey you have ahead of you.
 
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connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
I would just add my dear Lionel's very wise words, shortly after he was first diagnosed:

"Today is as good as it is ever going to be". Once you can accept, and live life according to the day (and every day can be different) it is a tad easier.

Thinking of you,
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,406
Kent
Dear Andy.

Welcome to TP. I am so sorry your dad had received this diagnosis.

You have had much good advice so far and i don`t have a lot to add. You will have realized by now how Alzheimers affects different people in different ways. Some deteriorate quickly, others much more slowly. there is loss of different skills and abilities, at different rates.

My husband was diagnosed in 2005, but we think, looking back, it really began in 1999. I do not know what tomorrow will bring. In fact I do not know what today will bring.

Just support your parents as much as you can, let your mother know you are there for her, as well as for your dad, and get on with your lives as best you can.

Keep in contact with TP. It has been, for most of us, our best source of support and information.

Take care

Love xx
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Hi Andy

Welcome to TP. As all the others have said, there are absolutely no rules with AD. Every sufferer is different, depending on the area of the brain first affected, and the rate of progression.

My husband was diagnosed in 2000, and for six years was relatively well, and able to lead a nearly normal life. We enjoyed ourselves, and had some wonderful holidays. Since last year he has deteriorated quite quickly.

So the only advice I can give is the same as many others. Enjoy life while you can. Do everything you would normally do, for as long as possible. That way, you store up a lot of happy memories, which will help when things get worse.

All the best,
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
Hi Andy
sorry to hear about your Dad.
I have only one bit of advice"Day BY Day".
It Is the only way I practised it for 13 years.
Norman