A Question for You All

Rob was diagnosed as being in the early stages of dementia by his
neurologist at his check up this month. All I know about the illness is
that it is terrifying. To be honest I don't even know how to research this
one. Any experience with dementia and how to handle it? Rob is already
acting a little strange, is more willing to argue, and throws hissy fits.
How much worse is this going to get? Could use some advice here beyond what
I've already done by telling the crew no weapons of human destruction will
be allowed into the house.

Pam S. already having to get rid of the sword collection

"tanada" <tanada@earthlink.net> wrote in message
news:YXWjh.2922$pQ3.1444@newsread4.news.pas.earthl ink.net...
> Rob was diagnosed as being in the early stages of dementia by his
> neurologist at his check up this month. All I know about the illness is
> that it is terrifying. To be honest I don't even know how to research
> this one. Any experience with dementia and how to handle it? Rob is
> already acting a little strange, is more willing to argue, and throws
> hissy fits. How much worse is this going to get? Could use some advice
> here beyond what I've already done by telling the crew no weapons of human
> destruction will be allowed into the house.
>
> Pam S. already having to get rid of the sword collection
>
Oh Pam, I'm so sorry to read your message and you have my heartfelt sympathy
after all you've been through already. Hopefully someone will be able to
offer some practical advice to help you through this next rollercoaster
ride.

Warm Hugs (and plenty more when you need them)

Alayne

tanada wrote:

> Rob was diagnosed as being in the early stages of dementia by his
> neurologist at his check up this month. All I know about the illness is
> that it is terrifying. To be honest I don't even know how to research this
> one. Any experience with dementia and how to handle it? Rob is already
> acting a little strange, is more willing to argue, and throws hissy fits.
> How much worse is this going to get? Could use some advice here beyond what
> I've already done by telling the crew no weapons of human destruction will
> be allowed into the house.
>
> Pam S. already having to get rid of the sword collection

Hello Pam,
Storing sharp objects elsewhere or under lock and key is probably a good idea,
but fists can sure pack a punch as well.
Watch for other replies, because I don't want to discuss personal experiences
here.
However, I seem to recall that last year, around this same time (just before
Christmas) you were telling us of similar problems.
Any chance that something related to Christmas gets him riled?
Finances?, change of routine? Someone there, who normally isn't who interferes
with his normal routine.
A few weeks ago, I was reading that a caregiver had to trouble-shoot the
situation herself and discovered that a certain type of music triggered events.
Actually it wasn't a type, but a tone, that also applied to voices that flared
him up.
I'm an advocate of taping for at least 2 or 3 days (while you're there or not)
and replay to see if there's any triggers that you can discern.
tbts.org mentions seeing a neuropsycologist. I think such tapes might help same
as well.
But for a male, I would try (having him see) a male neuropsycologist first.
Enough times to see if Rob will open up to some things that are bothering him or
flare his temper, whichever comes first. Although that's a fake environment,
with less "incoming" sensory "excitement", might be the best for testing
mentioned below (might not hurt to have it redone).

http://en.wikipedia.org/wiki/Dementia
"Snoezelen rooms that provide patients with a soothing and stimulating
environment of light, color, music and scent have been used in the therapy of
dementia patients." Another reason to do some trouble-shooting and taping
yourself, before making modificiations to a room?

tbts.org also has a list of support by area ***. I realize that you probably
will not want to be attending support meetings a lot; due to needing to be there
at home, but a meeting or two, might get you in touch with others and tips as to
coping with Rob's variation or a list of resources for your area, for an "on
needed basis"?

*** under Support Services, then "Support Groups".
J- wishing you success in coping and please stay safe.

"tanada" <tanada@earthlink.net> wrote in message
news:YXWjh.2922$pQ3.1444@newsread4.news.pas.earthl ink.net...
> Rob was diagnosed as being in the early stages of dementia by his
> neurologist at his check up this month.

So sorry to learn about the dementia. What is he basing this diagnosis on ?
Has there been a change in your husband's condition?
Here are some articles on Dementia

http://findarticles.com/p/articles/m...43/ai_15162652

http://www.medscape.com/viewarticle/481616_2

Is the dementia caused by age or diagnosis.

Sometimes caregivers ( if they have to work) use daycare and or home.
Assuming it is related to the Brain Cancer, the course of dementia is
related to the progression of the cancer unlike old age dementia.

Do you have access to a face to face support system?

Alex

"Alayne" <totallyfake@email.com> wrote in message
news:UM6kh.23554$z01.2453@newsfe3-gui.ntli.net...
>>
> Oh Pam, I'm so sorry to read your message and you have my heartfelt
> sympathy after all you've been through already. Hopefully someone will be
> able to offer some practical advice to help you through this next
> rollercoaster ride.
>
> Warm Hugs (and plenty more when you need them)
>

Thanks Alayne, it's not too bad right now. We just roll with the punches
and hope that we can keep things at an even keel. I'm just preparing for
what is to come before it happens. I hate surprises and was actually a
little relieved that I wasn't the only one who'd noticed that Rob's behavior
was getting a little bit out there.

Pam S.

Top Posting for length.

Thanks J.

I was hoping that you'd have something for me. Rob isn't bad. He tells me
no when I ask him to do something, so I say "ok" and ignore him. Then he
usually does what I asked originally. The hissy fits are when one of us
makes a comment that he doesn't want to deal with and are all words.
Actually, he's kinder than he was before the cancer. When I was ill earlier
this year, he actually took care of me. Us removing swords from the walls
is more of a precaution for the future than a thing of current need. Rob is
doing pretty well at the moment. Though I am thinking about putting
sleeping pills in his soda so that he doesn't stay up until 5 am again.

Pam S.


"J" <ercent@anon.inv> wrote in message
news:45912370.8DB86D02@execulink.com...
>
> Hello Pam,
> Storing sharp objects elsewhere or under lock and key is probably a good
> idea,
> but fists can sure pack a punch as well.
> Watch for other replies, because I don't want to discuss personal
> experiences
> here.
> However, I seem to recall that last year, around this same time (just
> before
> Christmas) you were telling us of similar problems.
> Any chance that something related to Christmas gets him riled?
> Finances?, change of routine? Someone there, who normally isn't who
> interferes
> with his normal routine.
> A few weeks ago, I was reading that a caregiver had to trouble-shoot the
> situation herself and discovered that a certain type of music triggered
> events.
> Actually it wasn't a type, but a tone, that also applied to voices that
> flared
> him up.
> I'm an advocate of taping for at least 2 or 3 days (while you're there or
> not)
> and replay to see if there's any triggers that you can discern.
> tbts.org mentions seeing a neuropsycologist. I think such tapes might help
> same
> as well.
> But for a male, I would try (having him see) a male neuropsycologist
> first.
> Enough times to see if Rob will open up to some things that are bothering
> him or
> flare his temper, whichever comes first. Although that's a fake
> environment,
> with less "incoming" sensory "excitement", might be the best for testing
> mentioned below (might not hurt to have it redone).
>
> http://en.wikipedia.org/wiki/Dementia
> "Snoezelen rooms that provide patients with a soothing and stimulating
> environment of light, color, music and scent have been used in the therapy
> of
> dementia patients." Another reason to do some trouble-shooting and taping
> yourself, before making modificiations to a room?
>
> tbts.org also has a list of support by area ***. I realize that you
> probably
> will not want to be attending support meetings a lot; due to needing to be
> there
> at home, but a meeting or two, might get you in touch with others and tips
> as to
> coping with Rob's variation or a list of resources for your area, for an
> "on
> needed basis"?
>
> *** under Support Services, then "Support Groups".
> J- wishing you success in coping and please stay safe.
>
>
>
>
>

"alex" <alex@noemail.com> wrote in message
news:36KdndXI8eYTNgzYnZ2dnUVZ_qyjnZ2d@comcast.com. ..
>
> So sorry to learn about the dementia. What is he basing this diagnosis on
> ? Has there been a change in your husband's condition?
> Here are some articles on Dementia
>
> http://findarticles.com/p/articles/m...43/ai_15162652
>
> http://www.medscape.com/viewarticle/481616_2
>
> Is the dementia caused by age or diagnosis.
>
> Sometimes caregivers ( if they have to work) use daycare and or home.
> Assuming it is related to the Brain Cancer, the course of dementia is
> related to the progression of the cancer unlike old age dementia.
>
> Do you have access to a face to face support system?
>

About the diagnoses, it is related to Rob's medical condition (the brain
cancer) rather than age. Rob is only 44. the diagnoses was after a
neurological exam and eight hours with a neurological speech and behavior
specialist at Chapel Hill's University Of North Carolina medical center.
Most of his medical is being transferred there so that he gets the latest in
cutting edge therapy. The army is doing all they can for him.

Rob's condition has been slowly going downhill for a year or so, and I've
been worried for some time. This was just confirmation of what I was afraid
of. We're lucky in that there are enough here that we can take shifts in
being with him. So far the worst we've had happen is an increased tendency
for him to burn food on the stove, and the need for someone to make sure
that he doesn't go on long walks alone. The worst part for me is never
having time alone. Either I'm in school, running errands, or home with Rob.

It is hard to explain Rob's condition to someone who hasn't known him for a
log time. Most people just think he's weird. I just have to make sure that
he doesn't go walking around outside in his pajama bottoms, Russian hat, and
a sweater (he did that last week), that someone cooks his food as he tends
to forget that he has food on the stove or in the microwave, and that he
understands what he reads or is being said to him. So far no big problems.

Pam S.

"tanada" <tanada@earthlink.net> wrote in message
news:tRmkh.4119$yx6.3134@newsread2.news.pas.earthl ink.net...
>
> "Alayne" <totallyfake@email.com> wrote in message
> news:UM6kh.23554$z01.2453@newsfe3-gui.ntli.net...
>>>
>> Oh Pam, I'm so sorry to read your message and you have my heartfelt
>> sympathy after all you've been through already. Hopefully someone will
>> be able to offer some practical advice to help you through this next
>> rollercoaster ride.
>>
>> Warm Hugs (and plenty more when you need them)
>>
>
> Thanks Alayne, it's not too bad right now. We just roll with the punches
> and hope that we can keep things at an even keel. I'm just preparing for
> what is to come before it happens. I hate surprises and was actually a
> little relieved that I wasn't the only one who'd noticed that Rob's
> behavior was getting a little bit out there.
>
> Pam S.
>
I get where your coming from Pam in wanting to know what maybe ahead of you
so that you're prepared and can understand your relief having a reason for
his behaviour.

Do take some take some time out for you honey though, the odd hour here and
there just for some "me" time, when you can try and switch off from all that
is going on and enjoy a bit of "normality". Stress can creep up behind you
and then finally overwhelm sometimes.

Warm Hugs

Alayne

tanada wrote:

> About the diagnoses, it is related to Rob's medical condition (the brain
> cancer) rather than age. Rob is only 44. the diagnoses was after a
> neurological exam and eight hours with a neurological speech and behavior
> specialist at Chapel Hill's University Of North Carolina medical center.
> Most of his medical is being transferred there so that he gets the latest in
> cutting edge therapy. The army is doing all they can for him.
>
> Rob's condition has been slowly going downhill for a year or so, and I've
> been worried for some time. This was just confirmation of what I was afraid
> of. We're lucky in that there are enough here that we can take shifts in
> being with him. So far the worst we've had happen is an increased tendency
> for him to burn food on the stove, and the need for someone to make sure
> that he doesn't go on long walks alone. The worst part for me is never
> having time alone. Either I'm in school, running errands, or home with Rob.
>
> It is hard to explain Rob's condition to someone who hasn't known him for a
> log time. Most people just think he's weird. I just have to make sure that
> he doesn't go walking around outside in his pajama bottoms, Russian hat, and
> a sweater (he did that last week), that someone cooks his food as he tends
> to forget that he has food on the stove or in the microwave, and that he
> understands what he reads or is being said to him. So far no big problems.

Hello Pam,
Well, I'm glad to read that it's not as bad as first seemed.
It's not unlike Alzheimer's.
There's 2 websites for N. Carolina, but I think this is the one for the N.
Chapel area.
http://www.alznc.org
They mention adult care programs, day care programs. (in case something there
could sometimes give you some time to yourself).
Locations for support meetings and much more.
There's links to 3 "store" websites - products that may help. (I couldn't access
them because of my cookie settings, so don't know if there's anything of value
there or not).
Home Safe Program, which seems to be bracelets or something to wear around the
neck or tagging clothing, but could be problematic if he doesn't wear them at
all times.
I was thinking about chip in the ear, like they do with pets, but the scanners
would have to be compatible with a vets..and who would think to look for a chip
for a human.
Then there's tattooing - the hand? arm? with his name and (a) phone number
(might work, as long as someone thinks to look in one of those places).
I don't know what to do about the stove or his being up and wandering indoors
during the night.
Apparently there's an estimated 132,000 people, in N. Carolina alone, with
alzheimer's, (and actually some of them might even be living alone) so surely
one or more has come up with ideas about that.
Poke around there, Pam and see if there's anything (that might be) useful for
you.
j

Thanks I'll see if there is any ideas that I can use.

Pam S.

"j" <nexsw@nvalid,anon> wrote in message
news:459458ED.5F9970F1@execulink.com...
> tanada wrote:
>
>> About the diagnoses, it is related to Rob's medical condition (the brain
>> cancer) rather than age. Rob is only 44. the diagnoses was after a
>> neurological exam and eight hours with a neurological speech and behavior
>> specialist at Chapel Hill's University Of North Carolina medical center.
>> Most of his medical is being transferred there so that he gets the latest
>> in
>> cutting edge therapy. The army is doing all they can for him.
>>
>> Rob's condition has been slowly going downhill for a year or so, and
>> I've
>> been worried for some time. This was just confirmation of what I was
>> afraid
>> of. We're lucky in that there are enough here that we can take shifts in
>> being with him. So far the worst we've had happen is an increased
>> tendency
>> for him to burn food on the stove, and the need for someone to make sure
>> that he doesn't go on long walks alone. The worst part for me is never
>> having time alone. Either I'm in school, running errands, or home with
>> Rob.
>>
>> It is hard to explain Rob's condition to someone who hasn't known him for
>> a
>> log time. Most people just think he's weird. I just have to make sure
>> that
>> he doesn't go walking around outside in his pajama bottoms, Russian hat,
>> and
>> a sweater (he did that last week), that someone cooks his food as he
>> tends
>> to forget that he has food on the stove or in the microwave, and that he
>> understands what he reads or is being said to him. So far no big
>> problems.
>
> Hello Pam,
> Well, I'm glad to read that it's not as bad as first seemed.
> It's not unlike Alzheimer's.
> There's 2 websites for N. Carolina, but I think this is the one for the N.
> Chapel area.
> http://www.alznc.org
> They mention adult care programs, day care programs. (in case something
> there
> could sometimes give you some time to yourself).
> Locations for support meetings and much more.
> There's links to 3 "store" websites - products that may help. (I couldn't
> access
> them because of my cookie settings, so don't know if there's anything of
> value
> there or not).
> Home Safe Program, which seems to be bracelets or something to wear around
> the
> neck or tagging clothing, but could be problematic if he doesn't wear them
> at
> all times.
> I was thinking about chip in the ear, like they do with pets, but the
> scanners
> would have to be compatible with a vets..and who would think to look for a
> chip
> for a human.
> Then there's tattooing - the hand? arm? with his name and (a) phone number
> (might work, as long as someone thinks to look in one of those places).
> I don't know what to do about the stove or his being up and wandering
> indoors
> during the night.
> Apparently there's an estimated 132,000 people, in N. Carolina alone, with
> alzheimer's, (and actually some of them might even be living alone) so
> surely
> one or more has come up with ideas about that.
> Poke around there, Pam and see if there's anything (that might be) useful
> for
> you.
> j
>

My local police have a registration process for people at risk, if your
husband got lost it makes it easier to find them. I believe they take
pictures and fingerprints.

Army ( I am assuming VA) should have a brain injury program and be able
to set your husband in a safe setting at home.

Also a web site from your home state.

Alex