I've spent all weekend in the hospital with my mom, she has no idea who I am anymore. Not sure why the fuck I put this on TWW. I guess just trying to do something routine to help my nerves a bit.

5/1/2011 10:04:31 PM

Sorry to hear that man.

5/1/2011 10:28:33 PM

Yeah man, my dad passed last year, while he didn't have alzheimers, watching him delirious and struggling to live was super hard. I could not imagine being around a parent who is psychologically unrecognizable for a long period of time.

I hope the best for your family

I'm AstralAdvent and i approved this message.

5/1/2011 10:39:12 PM

My grandmother has Alzheimer's... it's rough on my family. It came on pretty quick. About 8 months ago she was fine, then it's like in one day she went from fine to gone. She has moments of knowing who people are, but those are getting more rare. We've had to put her in assisted living and they're wanting her in a memory care unit now (she has no clue where she is, why she is there, or who anyone there is). She throws fits that my family has never seen from her. She keeps saying she wants to go home and by home she means where she grew up... where she hasn't been in over 60 years.

Sometimes she doesn't even know she was married or had kids & grandkids.

I guess this is all typical for sufferers, but it's different when you experience it first hand. Wild. Sad. I hope I never go through it.

5/1/2011 10:44:09 PM

My step grandfather just passed recently from it. It truly is a sad disease. The only person he knew was my grandmother. After being put in different facilities to care for him, he kept being combative and wasn't able to be housed in the VA hospital (was a retired general in the army). He forgot how to eat and swallow----right before he died he got reasonably better. I pray that no one else in my family gets that. Such a hard thing to deal/live with.

Sorry to hear about your mom Jaybee.




[Edited on May 1, 2011 at 10:50 PM. Reason : .]

5/1/2011 10:49:45 PM

She's had it a LONG time, by far the longest survivor the doctors have heard of, about 16 years. But it's really really bad now and she had a stroke Thursday which made it worse

5/1/2011 11:40:35 PM

On a funny but maybe a serious note , if she knows here name. Maybe you can make a tape/dvd for her to watch every morning when she wakes up.

5/1/2011 11:46:53 PM

hate to hear that man. My grandmother has it as well. She spent most of the time with us today quizzing us on who are in pictures. Still very sharp with things that happened 10 years ago and more, but not so good with the recent stuff.

She was on aricept (or something, might not be the right spelling or drug). didnt seem to help. took her off it and got a lot worse fast. got back on and slowed it all down. her oldest sister died from hit, the next older sister has it, she has it, and both of her younger sisters have signs of it. crazy disease.

5/1/2011 11:48:29 PM

I think mom is on that, she was highly functional up to about 4 years ago

5/1/2011 11:55:00 PM

How old is your mom, Jaybee?

Sucks man, I'm sorry

Don't know anyone with it that I'm close to.... my neighbor has ALS though. That's some really horrible shit as well. He's in his 30's...

[Edited on May 2, 2011 at 12:00 AM. Reason : ]

5/1/2011 11:59:37 PM

She was older when I was born, she's 74 now

5/2/2011 12:02:04 AM

Sorry about your mom. Random, but I just read this article before getting on tww

http://www.cnn.com/2011/HEALTH/04/27/seth.rogen.alzheimer/index.html?hpt=C2

[Edited on May 2, 2011 at 12:10 AM. Reason : on]

5/2/2011 12:02:12 AM

My grandfather died from it and had it for a long time. Shit sucks.

Sorry Jaybee, stay strong and do what you can to keep her comfortable.

5/2/2011 12:08:48 AM

While I don't know what Alzheimers was like, my grandfather had Parkinsons and didn't remember me by the end. Stay strong.

5/2/2011 2:10:35 AM

I'm sorry to hear that Jaybee.. So it started in her 50s? Have you been able to speak to any of the doctors about what that could mean for you?

e-hugs >------<

5/2/2011 3:33:34 AM

sorry to hear this. I have had a grandfather and grandmother who both suffered from this before passing.

5/2/2011 8:02:11 AM

My grandmother had it and it was terrible. Didn't remember my grandfather by the end, couldn't remember how to walk, etc. She had it for a long time too

5/2/2011 8:35:20 AM

Quote :

"On a funny but maybe a serious note , if she knows here name. Maybe you can make a tape/dvd for her to watch every morning when she wakes up."

Doesn't quite work that way. People often lose their short term memory and lose the ability to remember recently learned things, so the video would be forgotten shortly after being watched. Not forgetting the video's content, forgetting they even watched a video to begin with.

Also they'd likely not remember who you were and would be irritable enough to put up a fight / resist a stranger trying to force them to watch a video.

I have a friend going through this with his dad. It's a very sad thing.

[Edited on May 2, 2011 at 8:46 AM. Reason : -]

5/2/2011 8:43:44 AM

I spent all last night with her in her hospital room and she is lost when my dads not around. She gets confused and it's a LOT worse. She literally slept 30 min. Aside from that it was 13 hours of the same 2-3 questions over an over and over "who are you?" "where's jack", "where are my shoes, I want to leave". She got angry at me several times. Worst night of my life.

5/2/2011 8:43:57 AM

That sucks man, I watched an aunt die with Alzheimer's when I was younger. I can't even imagine watching a parent go through it.

5/2/2011 9:45:11 AM

Sorry to hear that.

5/2/2011 9:45:20 AM

5/2/2011 10:18:52 AM

My grandmother had alzheimers and passed away last year. My mother had always been extremely close with her and the last year or so, she stopped recognizing her and would get really angry at her. It was extremely hard to deal with.

Good luck, you'll need all the support you can get.

5/2/2011 10:26:55 AM

These are some of the hardest patients to work with. The mind goes but the body keeps chugging along.

The worst part is the family meeting where no one wants to be the bad guy and put the family member in the home.

I'm sorry man. My grandmother was like this for about 3 years before she died at around age 70. My wife's grandparents are 90 and are just now starting to decline cognitively. All you can do is love her and hope for the best.

5/2/2011 4:44:23 PM

I'm so so sorry, man. I can't even imagine.

5/2/2011 8:15:00 PM

I too, have dealt with this. My grandfather passed from it in 2005 (85). Of his 9 brothers and sisters (all dead now) all but one passed from Alzheimers. My grandmother (90) is now suffering from it. It took granddad nearly 4 years to go downhill, and even till the day he died he always knew everyones name. However its only taking my grandmother months for her to go downhill.

Its hard to watch. Growing up with people who were once so strong and independant, to have to watch them not know anyones name....its tough.

Best wishes with dealing with this, it really does blow

5/2/2011 9:06:52 PM

Sorry about your mom jaybee my grandma had it as well

5/2/2011 10:19:05 PM

I don't mean to detract from the thread, but I'm curious about something. How exactly does one die of this disease? I always thought it was exclusively a decline in mental capacities, with no direct effect on your physical health.

5/2/2011 11:22:50 PM

Jaybee, I'm sorry to hear of this, and my heart and prayers go out to your family.

Catzor, if you have no family or friends that have been afflicted by this disease, it is very hard to know how the disease affects a person. It is often hard for people who have had close friends/family to know what is going on. The simplest answer to your question, in my opinion, is that they forget information that is crucial to everyday life. They forget how to eat and all that it entails such as chewing, swallowing, and even simply telling others that they are hungry. They fall down and hurt themselves, and then if they are not in pain, they forget that they hurt themselves.

From my personal experience with several different cases, the disease essentially turns the person into a child in many respects. They sometimes even have a similar habit to babies, in the fact that they will eat things that they shouldn't. They often lose control of all their bodily functions, and all of their communication skills. They really forget how to take care of themselves, and need to be babysat all hours of the day, to provide for them and to keep them from doing thinds that are bad for their health. I have heard many reports of people suffering from the disease getting in their cars and driving off, promptly getting lost and not remembering where they are, why they are there, and how to get home. Sadly, many of these situations end in either fatal accidents, or very cold nights in which no human can survive.

As I said earlier, all of my claims come from 10 plus years of personal experiences. I have many stories that support my theories and would be happy to divulge if anyone is interested, or has any questions as to why i believe certain things.

In regards to medicine, I believe that the drugs do help. They keep the patients more calm, and makes them less likely to get aggressive with the sitters. The disease also tends to speed up when people are taken off the drugs. In my personal experience, chemo is terrible for Alzheimer's patients. It kicks the disease into overdrive, speeding up the digression of the person.

5/3/2011 1:07:51 AM

Quote :

"I don't mean to detract from the thread, but I'm curious about something. How exactly does one die of this disease? I always thought it was exclusively a decline in mental capacities, with no direct effect on your physical health."

Not only does your brain forget memories and actions, it also forgets the normal things that keep us alive. Mainly breathing and swallowing.

I know my great uncle died because his brain forgot to breathe normally.

Alzheimer's runs in my family and if I ever start showing symptoms of it, I will take care of myself long before I have to torture people with caring for me.

5/3/2011 6:19:27 AM

Had a great grandmother (on mom's side) and grandfather (on dad's side) suffer from this. Horrible disease to watch someone go through. It's really hard to tell if it "runs" on my mom's side because everyone dies so early (from cancer mostly) that they don't usually get to the age where Alzheimer's hits. Seems like it was an isolated incident on my father's side though. Everyone in that family lives til 100.

Sorry JB...I couldn't imagine going through that with my mother. I know it probably won't get any better, but I hope you can find some kind of comfort/solace in the near future.

5/3/2011 7:08:35 AM

AD is a degenerative disorder of the brain... These things called plaques and tangles (see picture below) form within the brain and eventually you see major atrophy of the cerebral cortex. That's why it causes severe dementia, as well as people regressing in behavior...


The sharp/really dark spots are tangles, the slightly lighter and not as defined bundles are plaques.



As you can see from the brain picture, there are severe changes...

Here are two websites you with affected family members should look at (especially Jaybee and Brandon1). There are hereditary forms of AD, both early onset and late onset. Early meaning before 60-65 y/o, late being after. The early onset is more often associated with specific genes but the late onset form is making gains in discovering what genes (or at least alleles) play a role.

http://www.ncbi.nlm.nih.gov/books/NBK1161/

http://ghr.nlm.nih.gov/condition/alzheimer-disease


The second website is put more into layman's terms, but the first has more in-depth info.


The thing that really, really sucks about AD is of course there is no treatment as of yet - but even medications rarely help. :\


[Edited on May 3, 2011 at 6:27 PM. Reason : meaning meds for behavior... no really great treatment medications as of yet iirc]

5/3/2011 6:25:19 PM

man this sucks so much... I think we are going to have to put her in a home. Its killing my dad, hes going to be lonely as hell.

5/3/2011 10:05:34 PM

e-hug

5/3/2011 10:10:53 PM

http://www.dailymail.co.uk/health/article-1183790/Delay-retirement-help-ward-Alzheimers-disease-scientists-say.html

5/3/2011 10:35:30 PM

^3 I'm sorry to hear that.. just let it out!


^ I wouldn't put much stock into that. AD has a ton of research going into it right now for the simple fact that they can't find a legit way to cure it, OR slow its progression. You also have to consider that they're finding AD has a pretty big genetic component (especially with the discovery of the APOE gene and e4 allele), and warding off retirement isn't going to help a tremendous amount with that. :\

5/3/2011 10:39:08 PM

I am sorry to hear this. this is something I'm fearful of ever happening. I'll keep and your mom in prayers.

5/3/2011 11:30:19 PM

Thanks. And I always TOTALLY over think things, so its killing me. Like my parents have always held each other every night while sleeping, and we might have to take her somewhere as early as tomorrow, so I just realized this might be the last night they sleep in the same bed together, so yeah, that tore me the fuck up.

5/3/2011 11:36:05 PM

Speaking from experience, you have to cling to the good times and keep bringing them back. You also have to remember that the best thing you can really do is try to make her comfortable and as content as possible. Sometimes this is much harder than others.

5/3/2011 11:54:59 PM

Dude, I'm so sorry. That sucks big time.

I haven't gone through it with a parent. I mean, I just can't imagine.

5/4/2011 12:56:06 AM

This thread

5/4/2011 1:38:25 AM

Sorry to hear this I can't imagine how hard it is for you and your family. Something to consider (and maybe this has been mentioned in the comments already) is a support group, if you or your dad haven't tried one. Maybe not right away, as you are trying to get details arranged for her move, but in the near future. A good group can help.

5/4/2011 8:29:49 AM

Quote :

"I think we are going to have to put her in a home. "

That's what we had to do with my grandfather eventually. He was a fairly strong guy and one time when my aunt and uncle were visiting, my uncle had gone outside at night and my grandfather forgot who he was. He was yelling at this 'stranger' to leave and was about to fight him...even though my uncle was a prison SWAT guy, so not small at all It became apparent that he eventually was going to be dangerous when left alone as far as wandering off or driving somewhere. There was also some worry that he might forget who his wife was (step grandma, married ~15 years). Plus it took a ton of stress off of her, since she didn't have to care for him 24/7. She still visited him all the time...we were extremely lucky he had her.

Also, stuff like the link above for working longer to delay Alzheimer's are complete shit. There are many, many similar scientific "findings" that are no more than the equivalent of wives' tales and are along the same lines of "Loss of pirates led to global warming". My mom did extensive, extensive research into the disease and possible cures and its all bogus. A lot of studies hinged on the fact that Alzheimer's sufferers became inactive late in life so their brain deteriorated from lack of use. It was completely wrong in the case of my grandfather, a unviersity professor of arts who kept extremely busy between painting, craftsmanship, and reading constantly when he wasn't out playing golf, exercising, or volunteering in the community. In his case, the signs began when he was playing golf and would forget what ball was his, or where he hit is, and later he would forget where he was driving his car to.

There are some other more herbal remedies which seemed to have a better basis in science, but still only along the lines of like drinking green tea and shit like that. I believe legitimate studies narrowed it down to something with aluminum, but I can't remember (..........ah shit ). There are drugs you can cycle through, and I remember my mom talking about how a new drug he would get put on would help him. There are different drugs for different stages of the disease, but all they really do is slow the degeneration.

There is a ton of promise in stem cell and nanobiotech research where medical advances can regenerate/replace the tissue afflicted by the disease (stem cells) or target the cause of the disease (nano). I think they are still trying to find the exact cause though.

Jaybee, you really need to be there for your dad as well. Spending time with him should help you both to get through this.

5/4/2011 8:58:33 AM

have you heard anything about an alleged connection b/w cold sores & alzheimer's? some research showed that the virus could cause the plaques. this scares me.

5/4/2011 9:05:38 AM

As a general rule of thumb, anything along the lines of "we've seen a connection between X and Alzheimer's" is garbage. I have not heard anything of that though. I think at one point they thought butter was causing it.

Couldn't find anything about butter, but just found an article that linked everyday pain killers to the disease.

[Edited on May 4, 2011 at 9:18 AM. Reason : lkj]

5/4/2011 9:12:58 AM

Peter, going off your remark on things that slow the progression.. there really is nothing that truly helps. :/ They're working on something that targets the tau proteins I believe, but nothing substantial has come from it yet (at least enough to implement in humans). I didn't know that about your grandfather though I'm sorry to hear that...

E-hugs for everyone in this thread!

5/4/2011 10:08:50 AM

to those with a family history of alzheimer's, have you or anyone in your family ever been tested for the gene or whatever it is? APOE e4 variant

[Edited on May 4, 2011 at 10:24 AM. Reason : ]

5/4/2011 10:19:25 AM

It's not really that easy... Right now the only way you can be tested for AD is to go through a clinical trial. And, if you go through said trial and you haven't shown symptoms yet, insurance can discriminate against you so you can't even use your result for any good. And to qualify for most of those research studies you have to have a family history of some kind, I think a certain number of family members.

Some people in this thread would need to look more towards the early onset AD form (Jaybee) which deals with the APP, PSEN1, and PSEN2 genes. Others (Brandon1) need to look into the APOE gene/e4 alleles. But even so, the majority of AD cases aren't genetic and are sporadic. Brandon1's story kinda worries me though because of the amount of people in his family history affected with it...

The thing about APOE and e4 alleles is that it's not 100% definite that you will get it - however, some of the early onset genes are that way. For example, one of my really good friends' husband's family has had over 100 people with early onset AD within only 4 generations.


If anybody IS interested in looking into all that, this is a great reference...

http://www.ncbi.nlm.nih.gov/sites/GeneTests/lab/disease/Alzheimer?db=genetests&search_param=suggestion

You can click on "research" and all the other tags.

[Edited on May 4, 2011 at 10:51 AM. Reason : .]

5/4/2011 10:49:30 AM

^right, i knew the results of that test, whatever you get, aren't 100%. just curious if anyone had it done.

there's an easy way to get it. 23andme does health & familial genetic testing. it's more for your personal interest/use kind of thing, but they are doing real tests on your real dna. it's $99 plus a year of their subscription service (retests your dna for their new research/tests/whatever). that's $9/month. i had it done & i do not have that varient i mentioned. they do LOTS of other tests for carrier status, disease risk, etc. i don't carry the breast cancer gene either. for major tests results for breast cancer or alzeheimers, they make you agree 3 times that you're sure you want to see the result bc it could be life changing. if anybody's interested in what else they do, i can post some screen shots of the type of info you get.

[Edited on May 4, 2011 at 10:56 AM. Reason : ]

5/4/2011 10:55:39 AM

My grandmother had it, and, as others here discussed, it was painful to watch. In fact, I feel like the best years I could have had with here were robbed and I definitely hold a grudge about that. Reading this thread makes me realize Alzheimer's is a lot more common than i really ever would have thought and makes me a little more afraid of my own future.

5/4/2011 10:55:42 AM