Early Onset AD

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Alan Holbrook - 08 Feb 2008 10:08 GMT

Not unsurprisingly, because those are simply the statistics, most people
who post here are posting about issues and problems with people with
"classic" Alzheimer's, that is, people who are going through their disease
later in life. For those of you who remember the few posts I've made or
replied to, my wife has EOAD, and she is not yet 60 years old.

Are there any other "members of the club no one wants to join" who are in
similar situations, that is, giving care to people who would normally still
be in the mainstream of an active life, working, raising children, etc?
People who are, by the medical definition of EOAD, 65 or younger?
Particularly spouses caring for spouses, in that age group? I'd be very
interested in a sub-conversation about the unique issues we in that
situation face, and how we deal (or don't deal) with them.

Let me simply note in case I inadvertently offend anyone that I don't think
Alzheimer's in the elderly isn't a terrible thing and isn't fraught with
problems. It of course is. The problems in EOAD are simply different
because of the difference in life conditions, and I'd like to explore those
differences with others in the same boat.

Perhaps, if there's enough response, we could consider
alt.support.alzheimers.EOAD...?

Regards,
Alan

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Evelyn Ruut - 08 Feb 2008 15:45 GMT

> Not unsurprisingly, because those are simply the statistics, most people
> who post here are posting about issues and problems with people with
[quoted text clipped - 24 lines]
> Regards,
> Alan

Hi Alan,

Over the years we have had many participants here who have had a loved one
suffering from early onset alzheimers. Although some things may be
different, the coping skills required by the caregiver, are pretty much the
same.

This particular newsgroup used to be a lot more active, but then one major
ISP quit carrying usenet groups (AOL) and people had to go to Google or
subscribe a different way. I noticed a lot less traffic on all the
newsgroups when that happened.

I think you can still get just as good advice here as ever, since some of
its "alumni" continue to come here and offer help whenever they can give it.
By starting a separate newsgroup you might get even less traffic than we get
here, which would limit the conversations and lose the benefit of the people
here with many years of experience and wisdom.

But if you look around maybe there is such a group already in existence.
Nowadays there are a lot of email private groups that people have started
up. Yahoo has some for instance. I am not sure if they have anything
devoted to EOAD but it can't hurt to look.

Meanwhile, I do hope you stick around and ask your questions here too.
There are people who search the archives to find answers to their questions,
and this is a long established group.

Signature

Best Regards,

Evelyn

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Texas Gen - 08 Feb 2008 23:34 GMT

Is there a group for who has EOAD himself? Most of the posters here seem to
be caregivers.

Thanks--

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Alan Holbrook - 09 Feb 2008 10:31 GMT

> Hi Alan,
>
> Over the years we have had many participants here who have had a loved
> one suffering from early onset alzheimers. Although some things may
> be different, the coping skills required by the caregiver, are pretty
> much the same.

Hi, Evelyn,

Over the weeks and months I've been lurking here and occasionally
posting, I've read a lot of your posts and been impressed with your
insight, compassion, and understanding. As you point out, the skills
required by caregivers are pretty much the same for all of us providing
care for a loved one with AD.

But, as you also point out, "some things may be different." And it's
these differences that are particularly painful and upsetting to those
of us dealing with sufferers with EOAD. For one, if you are a son or
daughter dealing with 70 or 80 year old parents, you aren't concerned
with the loss of sexual intimacy with the person you've been married to
for over 25 years and had children with. If the person you're caring
for is truly a senior citizen, you don't have to be concerned that
someone will say "Oh, yes, we have a wonderful care program in your
neighborhood that will help you to...oh...wait a minute...your wife
isn't 65, is she? I'm afraid you're not eligible!"

If your parent retired 10 or 20 years ago by choice, as a normal part of
the progression into the "golden years", you don't have to deal with an
intelligent woman with a masters degree in education who went to her job
as a very senior teacher in a public school system one morning and was
sent home that afternoon, never to work again. If you give care to your
parents, you don't have to be concerned that where you had two children
a year ago, both of whom need two parents in their lives, you now are
the single parent of _three_ children, one of whom has severe emotional
issues. And you don't have to deal with children who don't know how to
deal with the gradual loss of their mother, and children who won't bring
a new boyfriend or girlfriend home to meet Mom because (a) Mom may very
likely say something in a vey loud voice like "Oh, wow, is he f**kin'
handsome!", and (b) Mom and Dad live in a pig sty because while Dad is
at work, Mom doesn't do any house work but instead contributes to the
mess that Dad (who is 62 and doesn't have all the same energy he used
to) simply can't keep up with when he comes home, cooks dinner, shops,
and runs the other errands that need to be done. (Yes, yes, I know, I
can _buy_ help for some of those issues, but they're just illustrative
points.)

As I said in my original post, the problems in EOAD aren't any less
painful or terrible than the problems associated with regular
Alzheimer's. And I'll stay with this group, and I'll read, and I'll
contribute where I can, and I'm sure I'll benefit (Hell, I benefit
simply by knowing you're all out there!)

But I say again, some problems around EOAD _ARE_ unique to the
demographic. So maybe alt.support.Alzheimers.EOAD isn't the optimal
answer. But I ask again: is there anyone out there in the same boat
who'd like to have a conversation about it?

Regards,
Alan

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Evelyn Ruut - 09 Feb 2008 15:01 GMT

Hi Alan,.... between the lines, you know the drill......

>> Hi Alan,
>>
[quoted text clipped - 10 lines]
> required by caregivers are pretty much the same for all of us providing
> care for a loved one with AD.

Thanks for the kind words. I do care. Once having been there and done
that, you can't help but have compassion for what others are going through.
Our journey with Ida may be over with, but there are people newly diagnosed
every day. It's a rotten illness and the family suffers along with the
person who has the disease. Sometimes a kind word at the right time can
bring at least a little coping skill and wisdom, and sometimes that makes
all the difference in the world. It did for me, and I come here only with
the wish to help and empower.

> But, as you also point out, "some things may be different." And it's
> these differences that are particularly painful and upsetting to those
[quoted text clipped - 6 lines]
> neighborhood that will help you to...oh...wait a minute...your wife
> isn't 65, is she? I'm afraid you're not eligible!"

That's awful. There should be no such age restriction when it comes to
alzheimers. Hmm.... I think I will ask in my town if the local center has
that restriction. It isn't fair. As for the intimacy part, well, anyone
can tell you that life itself is not fair. It really isn't. It's sad,
it's horrible, it's a bad break, but it is life as it really is.

if your parent retired 10 or 20 years ago by choice, as a normal part of

> the progression into the "golden years", you don't have to deal with an
> intelligent woman with a masters degree in education who went to her job
> as a very senior teacher in a public school system one morning and was
> sent home that afternoon, never to work again.

Alan, there is always a cutoff point, a moment when things change
irrevocably forever, no matter what the age. It is always a surprise. My
mother in law went from being a frisky, fun loving lady who kept a spotless
house and entertained all the time, cooking wonderful and elaborate meals
and having a lot of friends, to a bitterly depressed, confused, unwashed,
slovenly person, crying all the time, who refused to leave the house and
threatening to kill herself daily.

We couldn't tell you at what exact point it happened, but one sad day we
realized she was in some kind of deep trouble. The wakeup call comes and
it makes no difference what the age. Although we didn't know it, for a
long time before, her girlfriends were getting on her case, telling her to
get on antidepressants, get off the damned sofa and clean this house....
wash the curtains and clean it up. We had no idea it was that bad.....
until one day we did. It was only when her sister got a bleed in her brain
that we drove down to her home and saw where things were going. Only in
retrospect did we begin to put the pieces of the puzzle together and realize
there were signs that something was VERY wrong. But it was still a
surprise to us.

If you give care to your

> parents, you don't have to be concerned that where you had two children
> a year ago, both of whom need two parents in their lives, you now are
> the single parent of _three_ children, one of whom has severe emotional
> issues.

For us, it was that our kids were finally up and grown and on their own,
then suddenly we needed babysitters and daycare and (adult) diapers again.
It was exactly as you describe..... like having a child with severe
emotional issues.

And you don't have to deal with children who don't know how to

> deal with the gradual loss of their mother, and children who won't bring
> a new boyfriend or girlfriend home to meet Mom because (a) Mom may very
[quoted text clipped - 6 lines]
> can _buy_ help for some of those issues, but they're just illustrative
> points.)

There you have me. It is definitely a separate issue to have ones kids
needing their mother including all the things she used to do for the
household and for them, but finding only more confusion. But the
disorganization, the inappropriate comments at inappropriate times, that is
all familiar.

Alan it seems to me you need to get SUPER organized and get lots of outside
help. Especially when you are at work. If she is making messes and
stressing you out, you need to realize you are not made of iron. If there
are resources of any kind, don't be too proud to use them.... any and all of
them.

> As I said in my original post, the problems in EOAD aren't any less
> painful or terrible than the problems associated with regular
> Alzheimer's. And I'll stay with this group, and I'll read, and I'll
> contribute where I can, and I'm sure I'll benefit (Hell, I benefit
> simply by knowing you're all out there!)

I am so glad you will remain. Every aspect of caregiving for a person with
this illness needs to be addressed here. People will see your post when
they search. You have no idea how many people can be helped by your
experiences.

About getting help.....I got lucky. My next door neighbor began to baby sit
for us just once in a while when we needed to get out. As time went on we
needed to get out more and more. It was horrible, stressful, and the worst
pressure cooker of an existence either of us ever went through. I can
imagine how hard it has to be for you. Please promise yourself that you
will not try to be superman, and that you will look towards the long term
sooner rather than later.

If there is anything I DEEPLY regret, it is that I kept Ida at home longer
than I should have. Dennis told me, others told me, and I didn't listen.
I thought I could handle it. We thought she'd have a hard time adjusting.
We feared that she would be alone or experience confusion in the nursing
home. We thought she might forget to speak English and start speaking her
native tongue again and not be able to make herself understood. We thought
that no one could take care of her like we could. WE WERE WRONG.

She adapted quickly. She never lost her ability to speak english, she soon
adjusted to the place and we finally had to learn how to sleep through the
night again and live our own lives again.

> But I say again, some problems around EOAD _ARE_ unique to the
> demographic. So maybe alt.support.Alzheimers.EOAD isn't the optimal
> answer. But I ask again: is there anyone out there in the same boat
> who'd like to have a conversation about it?

I do hope someone pops in here and is able to help.

In the meantime, remember that you and your kids are people too. You all
deserve to have a life. Get help. Get all the help you can buy, beg,
borrow or steal. Don't put yourself last, put yourself and your kids
first. They deserve it and you deserve it.

Signature

Best Regards,

Evelyn

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Strobe - 10 Feb 2008 05:54 GMT

<SNIP>

>As I said in my original post, the problems in EOAD aren't any less
>painful or terrible than the problems associated with regular
[quoted text clipped - 6 lines]
>answer. But I ask again: is there anyone out there in the same boat
>who'd like to have a conversation about it?

Been there, done that - but still don't much feel like talking about it,
except to validate your point.

Yes, the impact of EOAD on a young spouse is different and far more severe
than when the disease strikes later, or when - as is more common - it's your
aged parents that are affected.

The loss of emotional and physical intimacy with your wife - on top of the
strain of caregiving - hurts like hell.
However, that's something that can come with other serious diseases, not
only AD, so there might be some other places that can help you with that.

The people here can really help with the nuts and bolts of AD care, and
emotional support for the caregivers, however - so thank you all, again.

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Alan Holbrook - 10 Feb 2008 09:57 GMT

> Been there, done that - but still don't much feel like talking about
> it, except to validate your point.
>
>

Save my email address. If you ever get to the point where you're ready to
talk, let me know...

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June - 09 Feb 2008 21:54 GMT

> Not unsurprisingly, because those are simply the statistics, most people
> who post here are posting about issues and problems with people with
[quoted text clipped - 24 lines]
> Regards,
> Alan

Hi Alan....I don't have any experience with EOAD but I do have experience
with problems within the healthcare system. I'm assuming you're in the U.S.
I have a grandson with birth defects but even with very good insurance there
is always a hassle getting bills paid. After his last surgery there was a
problem again with insurance. I don't know if this could be part of your
problems but there may be others that could get help from the Patient
Advocate Foundation. They mediate, help and generally give hope to those
who need it most. Best of all it's free. Their website is:
http://www.patientadvocate.org/ I was trying to help so I googled patient
advocacy and there it was. They are working on my grandson's case and
they're reasonably sure that they can get it paid. They help with all kinds
of healthcare problems. Sorry I can't give more emotional support. Take
care.....June

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Alan Holbrook - 10 Feb 2008 02:44 GMT

>> Not unsurprisingly, because those are simply the statistics, most
>> people who post here are posting about issues and problems with
[quoted text clipped - 11 lines]
>> I'd be very interested in a sub-conversation about the unique issues
>> we in that situation face, and how we deal (or don't deal) with them.

> Hi Alan....I don't have any experience with EOAD but I do have
> experience with problems within the healthcare system. I'm assuming
[quoted text clipped - 10 lines]
> problems. Sorry I can't give more emotional support. Take
> care.....June

June,

Thank you so very much for your post. Yes, I'm in the US (not hard to
tell from the lingustic style, is it?). Fortunately, at least so far,
the traditional healthcare system hasn't been a problem, and insurance
is taking care of everything we need moneteraly, again, so far. But I
will defintely visit the site you referenced and get familiar with it,
because as we all know, all too often the sytem doesn't work for us and
we'll need some help at some point.

Regards,
Alan

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