Alzheimer's

My father suffers from it.

As mum and dad live about 50 miles away, I don't see them daily so I find it relatively easy to cope with.
My mum on the other hand has it 24/7 and sometimes, I have to tell her off for saying things like "you don't remember anything" which I'm sure hurts dad, as he knows he can't remember anything. He's not stupid, just very confused and forgetful.
It's impossible to hold a "proper" conversation with him, so I try and keep it light and easy, stuff he can handle - weather, the garden looks nice etc. As soon as I try and ask what he's been up to, he gets uncomfortable and says he can't remember.
So far, he's recognised me every time, but on occasion, has asked mum who she is..... He thought she was his sister....
He gets very frustrated and angry at times and often shouts and swears at mum (he is not a violent man and has NEVER hit mum) - I have never heard him swear in my life.
A few months ago, he went mad and shouted and was swearing, overturned the settee (he's 80) and stormed out saying he was going for a VERY LONG WALK. He came back less than 5 minutes later apparently having forgotten all about it and was right as rain. (Thankfully)

As far as my family are concerned, the best way to handle it is to support mum as best we can, she is in danger of becoming very lonely as she can no longer discuss things with dad and has had to take over all the household things that dad used to do; insurance, money matters utilities, repairs etc.
Last week dad, whilst watching the news said "I didn't know we were at war with Iraq" - so obviously, things such as discussing current events, or watching a movie simply don't happen any more. He can't follow any threads on TV and loses the plot after about 30 seconds.
The only thing he seems able to enjoy is going out for a walk ( a worry as he keeps getting lost - he was VERY late a couple of years ago and said he'd been to the airport (3 miles away). A friend had actually found him at a new hotel about 2 miles from home) and he enjoys watching football (soccer) as they always show on-screen who's playing and what the score is, so he seems to enjoy "the moment".

I find that for me to cope, I have to laugh about it at times. I try harder now to speak to mum more regularly as she needs some stimulation to break from the lack of input from dad.

If I go out with them, I treat dad like one might a child; follow him to the bathroom, watch what they're doing, make sure he doesn't get lost etc.

There's no easy way, but supporting the people in regular and immediate contact is one of the best things. I also feel that it's important to try and not confuse any situations.
If I am showing photo's and dad says "I don't remember that" - I simply say something like "I think you were there but I might be mistaken" and try and soften the impact.
We all know how frustrating it is when we try hard to recall an event but can't.
EVERYTHING is like that for dad.
Not sure if this helps you at all, but I'm afraid it only gets worse.

Good luck, Martin.

Computers are supposed to work on 1's and 0's - in other words "Yes" or "No" - why does mine frequently say "Maybe"?......

In the UK I advise this organisation; alzheimers society

I don't have much direct experience of people with Alzheimer's but it is of some interest to me, as I recently lost an aunt to it and a great aunt is at an advanced stage.

Depnding on how advanced it is, you might find Brain Longevity by Dharma Singh Khalsa useful. I've had this for several years, and I try to use some of its suggestions for my own mental health problem [depression], although my efforts have been rather sporadic due to being depressed... .

Hi Ludwig

Unfortunately my mother in law has suffered from Alzheimers for about 8 years.

It's such a huge topic it is, in my opinion, virtually impossible to deal with in an internet thread. So many things change as the illness progresses that what is appropriate in one year /month is not in another.

Something that might interest and help you is a book written by an American lady Sue Miller. It is called The Story of My Father published by Bloomsbury. My wife bought it from Amazon (UK branch!) and has found it very helpful. Throughout her Mum's illness she has been able to relate to the writer's experiences and attitudes and this has helped her. Might be worth getting a copy if you do not have it. Just a warning, she says the opening is a touch heavy but it is well worth persevering.

Hope this helps.

Cheers

Max

For Scottish members, go to Alzheimer Scotland.

I can recommend a fabulous book called "Dementia Reconsidered" by Tom Kitwood. He has demonstrated that with the right approach people with even advanced dementia can be helped to maintain their well-being as a person. His approach has transformed the lives of people where it has been adopted. I can't recommend it highly enough.

Thank you for your comments and recommendations so far. I was very hesitant to start this thread, fearing a lot of criticism for discussing such a sensitive and personal issue. But my thinking was this is a loved one, the one closest to me, and I need to reach out for information however possible whether friends, doctors, online, library, etc.

Martin, thanks for sharing your personal experiences. The reality of all of this is still sinking in.

One practical thing to remember which is sometimes forgotten is to consider Enduring Power of Attorney for the financial affairs. This needs legal (and sometime medical) advice. If you are not sure what is meant by this please ask and I'll explain.

With regard to online resources apart from those suggested you may like to search a bit here. Use 'dementia' in the search box. This is a searchable archive of clinical evidence that is aggregated and generally considered to be of high methodological quality. 'Doing a Google' on dementia will generate a great deal of information that may be hard to digest or trust. You can also get some info on dementia from the NHS Direct although it looks a bit basic.


Bruce

Hi Ludwig

One small practical thing that I have remembered since my previous post.

We found in the early stages that it helped enormously to give a prompt when asking questions.

For example we would have my mother in law over for the day and the following day ask if she had enjoyed herself yesterday. This would get a blank response. But if we asked did you enjoy it at our house yesterday this would prompt something to enable her to recall ie give the patient something to kick start the memory in the right direction when asking questions.

Also here in the UK there are drugs that in the case of my mother in law worked wonders for two years or so. They did not lessen the impact of Alzheimers but they halted its progression. You are probably better placed in the US than we are here with regard to drugs but the drug my mother in law took was Aricept. If you haven't done so already I would get on the case for drugs - I believe there are three that are used here.

Cheers

Max

Ludwig,

quote:

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Has anyone studied this disease, and if so are there any great online resources one wouldn't find in a typical Google search?

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I'll ask my wife tonight. As it happens, she's an epidemiologist who studies Alzheimer's. Her professional interest is on risk factors for the disease, but she should have some useful resources that I can forward.

Sorry to hear about the bad new, Luds.

Joe

With regard to Max in Hampshire's post re drugs, look here for the NICE guidance on drug treatment. Information for professionals and patients/carers.

Bruce

Joe,

Anything you can pass along would be much appreciated.

All,

Thanks for the input.

Ludwig,

Suzanne says a good place to start is the Alzheimer's Association. When on the home page, click on the links of interest in the top right corner, the ones that start Especially for:. I assume you're most interested in the "care partners" link.

You might also want to check the local Seattle, Washington chapter. (You are in Seattle, yes?)

Hope this helps.

Joe

I appreciate it, and please pass my thanks to Suzanne.

Ludwig,
I am very sorry to hear your distressing news.
Simon