Hi to All,

Do you ever feel like you are detaching from the world? And people that are close to you? Sometimes, I'm very emotional and, at times, I become detached almost emotionless. Like I'm really not part of that story or equation?!
I wonder if this is like when people get diagnosed with terminal cancer?? Some detach, go inside themselves to figure out how to cope. Is this what I am doing? Is anyone else feeling or doing this?
Is it shrink time?

P.S. Thanks Ttom for helping me with the faces and all!
You're terrific Tom!

Lisa,

I live this way most of the time, especially the last eight years. My only attachment that stays constant is my wife. The psychologists call my condition "schizoid."

It may be more of a though process than an emotional process. I am not sure. The classic schizoid disorder is thought to be environmental or genetic.

I think it manifests in people with dememtia or MCI because we find it hard to follow the social settings around us and may retreat out of a sort of self preservation.

A friend once asked my wife if I sometimes "go inside myself." She replied that I do and it is a result of my neurological condition.

I do best with just one or maybe two others, not more. It is too much for me to process and track. For a man, this is probably not so troubling. For women who are much more relational, I can imagine it being more of a struggle.

I do well with little kids, toddlers mostly. I do child care at church and usually one of the kids picks me and we spend the 90 minutes together. They like the individual attention and I can stay focused on them easily. I have a hard time if more than one wants my attention.

Adults do not fit this dynamic very well, usually.

I have sometimes called this "being lonely in a crowd." Is it a coping skill or a behavioral problem? Who knows. As long I do not stress out about it, I do OK.

Lisa, you bet I isolate more, but I think for a lot of reasons.

First, the obvious: I don't have a job to go to. And,
I avoid people when I know I'm irritable.
I avoid people when I'm burnt out.
I avoid anywhere there's noisy people, I can't tolerate the noise and sights.

Being lonely in a crowd? For whatever reason, I almost never feel lonely. This is how I was born, even as a baby I'm told I tolerated being alone really well. That isn't normal, but then no one has ever said I was normal. As for how to take feeling lonely in a crowd, well, remember that our emotions are one part of our brain's telling the rest of us something too basic to put into words. When we realize, for example, the message is that we're lonely, talk with it. Get input from loved ones and doctors. How much time needs to be spent outside the home, with people; will anyone do; where do I find them.

Oh, and I don't see being lonely as a coping skill or a behavioral problem, any more than getting hungry for breakfast is. It's just a feeling, that's expressing a need.

Alan,
I don't think you understood my point. I'm talking about detaching. Which is very different from being lonely. Detaching is kind of like not caring, not caring that your not caring. Separation. Not necessarily physical separation but emotional separation. Stepping back, not so involved. Am I making any sense? It is not depression, either. It feels weird yet normal. I think this is what happens when terminal patients come to terms with their mortality? My husband kind of detached before he died. Back then, I didn't understand. But now I think I do. Maybe?

Lisa

I understand what you mean I have it too. Not happy not sad just numb. then their are times when emotions are uncontrolable.
I think it has to do with chemical releases in the brain. That is where the violent anger comes from. The rage is the worst there is no reason for it but so hard to fight. Such a wonderful disease

sr7255,
I know that rage! It scares me. I hope the seroquel will help me with that. Not exactly numb either, kind of a "not caring." is it apathy?
Hi, sr7255, thanks for jumping in and sharing. Welcome to the AD Message Boards. This is a great place to share feelings, stories or just get a lot of help from some wonderful people.

Do you have EOAD? Or are you a caregiver? Would you share your story with us. We'd like to help if we can.
If you need immediate assistance/help, please call the AD Helpline @ 800-272-3900. (24/7).
It sounds as if we're going through similar feelings? I wonder if the rage is damaged cells or uncontrolled emotions? Or both?

What do you think?

Dear Lisa, I feel very comfortable at home by myself on the computer--all day. I don't need to get dressed, I wear only sweats. I don't need to watch tv, I don't need to talk to anyone. I don't answer the telephone except for a few people. I eat what I want, I don't care if I get fat(ter). I don't play with my cats. I don't open the mail. I do very little cleaning. I only shop for cat food and cat litter. When I go to a doctor's appointment evidently I can pull myself together because they never see anything wrong. I don't feel bad, I feel OK. Yet I know that this type of behavior is not normal and is unsustainable. But I still don't care.

I like to listen to music on the radio, watch Y&R, and eat ice cream.

Lisa, is this what you mean?

Iris L.

[quote]Alan,
I don't think you understood my point.[/quote]

Man, if I only had a dollar for every time somebody had to say THAT to me . . .

Lisa, there is no way I can know, without returning to the me of several years ago, and talking with you. My best guess is that some dendrites in the mood part of your brain are going to tangles. Unless you've recently started a medication that could be affecting your mood?

sr7255, did your mama name you after a State Road? Anyway . . . rage was getting out of control for me, until I got enough Seroquel in me. It's still a problem, just not as often, and not as intense.

Iris, before my mom got too bad, I used to kid her about improving her diet. She thought she was old enough (70s at the time) to eat what she wanted, which was cheap tv dinners and sweets. Once, when I was preaching the virtues of fruits & vegetables, she said, "I bet I wouldn't live any longer, but it would sure as H-E-Double-Hockey-Sticks FEEL like it!!"

My mom's soap was "Days of Our Lives." I swear this is true: I watched it with her a few times in the 1980s. When I checked it 20 years later, it was the same people, looking the same - except their faces were tighter looking.

Lisa And Alan
I do have EOAD I am 54 now and been having problems about 10 yrs now i am having hard time functioning and spelling lol. I still agree that detatching is a good word for what is happening. I have trouble controling emotions when something out of the blue happens and the doors to my mind close and i can not control what happens to my feelings. To others i am hysterical but i am not really it is like i can see what is happening like a bystander inside but no control of the outside of me. But that is going a little off topic.....I used to be a warm loving happy person full of life and now I feel uncomfortable hugging and I dont find enjoyment in things I used to like. I am not depressed but I dont feel joy anymore. I have become flat....not happy not sad not anything I still pretend to be happy for the family but inside i just dont care. I think that detatched feeling makes you isolate.

Detaching is what made my wife ask me to seek professional help! There was an incident at our fishing camp that is on an isolated island. A tree was about to fall on our 5 bedroon camp! I detached and started barking at peopl,e like I was somebody else. Cauised a lot of hurt feelings. Beyond taht I have had times that I thoughjt something was casing me in the truck. There are other times that I get this numb feeliong about everything! I'm so luck to have a wife that loves me.

Lisa, the Seroquel is supposed to stop that.

Pleas call whenever you feel like talking.

Hi Lisa

I completely understand "detaching". It's like stepping aside and looking/hearing the events around you, but mechanically being a part of it.

Maybe this is a way of protecting us and giving us a glimpse of what is going on and how to continue, with or without? To me, it's like being in a dream but, you're awake and cognizant of all that is going on, but, you're invisible? Does this make sense to you, or am I interpreting what your meaning is?

Yesterday, I had an appt with my PCP. I told her I want to speak with a therapist. My verbal, written, visual tests I scored 17 out of 30....I have declined. My primary told me that I have declined considerably, that I am at full stage 4 out of 7.

Lisa, you've helped me in my "moments"! How can I help you? Are you interacting with others?

You need to "hang out at the backyard fence" and converse with mother nature (that is, if nobody human is there, Ha Ha Ha). Plant a flower and nurture it. Keep doing this, and hug yourself, If I was there I'd give you a great big hug.....everyone needs this once in a while. Your feelings will grow in your floral landscape, it will be visual to you and you will be able to enjoy the birds, bees and butterflies that visit it! Please smile and feel better, it's hard to be the strong one always!

Take care of you
M

Dear Alan, sr ,Iris, Tom and Mary,
Thank you all so much for caring. I think each one of you understands what I am feeling and what I am talking about.
I do still do things. I feed my animals (dog and cat). Walk my dog 2 x day. Take care of my Mom (Has AD). Do to PT for back/hip problems. Grocery. Pharmacy.
I find myself wanting to talk and be with y'all more than others. Am I becoming obsessed with this EOAD? I sure hope not. I have enough problems already!!!
I try NOT to look at the stages of AD too much because I know I've declined but I don't want to know more than that. A little denial, anyone?

Thinking and missing ALL of you,

State Road, I'm about 6 weeks short of 54. I think my problems started getting bad enough to cause problems in late 2005.

About mood: Think of your moods as family you love, but sometimes you have remind them who's boss. Sure there are mood disorders, and I have no way of knowing if you have one or not. But it's a mood's nature to be a follower. Moods can't help but react to things, unless you're in an organic kind of mood disorder. What helps me connect back to the world sometimes are different songs, depending on what I feel like listening to. I have several YouTube music videos in a file, to be taken as needed.

Mary, your test scores are only representing how you answered the test questions. They're scores, they're not YOU. Looking at my tests just gets me down. No need to look anyway, y'know? Good for you for hooking up with a therapist. He/she will love hearing about your detaching process, figuring out what it is and how to work with it.

Lisa, you can call yourself Cleopatra, the queen of denial!! (De Nile, get it?) Anyway, how does one figure out what is appropriate, when each of us figures out how we face our illness? I wouldn't know where to start. That's where it's good to have a few feedback resources, people who know you that you can ask for their learned and loving opinion.

Lisa, I find I am now very detached from my husband but my son and I have a special connection maybe because of his age (14).

Alan,
Love your sense of humor as usual! You sure are smart!

Tracy, I'm glad you're close to your son but don't forget your husband. Think he's detaching too?

Lisa,
I know what you mean about being detached. Iguess I have felt this way for a long time. At first I thought it was all the med's I am on. I don't feel detached from my husband or family. I just don't feel for things like I used to. I don't know if this makes sense, but the word detached is the way I feel about myself. I don't know if it's the EOAD, maybe a part of our brain may cause us to feel this way. Maybe our brain cells for dying. If anyone can figure this out let me know. I just know I am not the same person I used to be. To me the bad thing about having this at our age is knowing when things happen. I always read all the time and now I don't remember what I read. All these things have to effect our minds, at least it does mine. I relate to so much that is written on this board. It has been very helpful.

Sharon

Sharon, I also don't remember what I read. I used to enjoy reading very much. I have shelves and boxes of books and magazines, I've been saving to read. But if I admit that I'll probably never get to read those books and magazines, I'll feel like I'm giving up a major part of my existance, being literate. I know many people live their lives without reading. What would I replace reading with? I still haven't figured that out. Other than surfing the internet and reading message boards.

Iris L.

Hi Lisa and Everyone Else.

I have not posted in a while but have been catching up now and then. Lisa you triggered some feelings when I read this in one of your posts. (Am I becoming obsessed with this EOAD?)

I was becoming obsessed with EOAD. For the past year, since diagnosis Feb 08 @ age 57 I made it a mission to find out everything possible about how to live with this disease. Was constantly on the computer. Hunted out web resources and Message Boards like this that I participated in. I tried to keep a positive note to my postings in order to encourage myself and others. I then found myself getting upset with people that were posting more on the negative side, pity party, angry at the system etc. I felt like instead of trying to improve their current, it is what it is situation, they were wallering in the pity. Just could not understand. I think in a way I needed to step away from the stimulus of the boards.

I think the feeling came from that detached sort of state. I think I got on overload. Kind of like why get bath, brush my teeth and get dressed if I have no reason or place to go. I have lost interest and kind of feel numb inside. It is not a bad feeling or a depression or sadness. It is just that my vessel is empty. I simply don't care it seems. Very different than 6-8 months ago. I have become emotionally separated from the present it seems and lost my interest in my situation and in the problems or issues of others. I check only this board every 3 or 4 days and only because I get daily emails.

Not looking for any answers here, I don't think there are any. I think there are hills and valleys with this disease and I am in a valley.
I guess I just wanted to post my feeling in regard to your question about feeling detached.

Thanks everyone for listening.

Lynn

Lynn,
Thanks so much for coming here and posting your thoughts and feelings. It's important to get feed back from your peers. You are ALL my peers. I need you all. I can't seem to get this understanding from any one else! You are right, Lynn, there aren't any answers but there is a heck of a lot of support here. I think we're all dealing with this disease/monster/illness/dementia the best way we can. Some days are definitely better than others as we all know. Been there, done that. But many days are different and I feel I can share and learn and hope with everyone here. Lynn, don't forget about Hope! It may waver at times but we all still have it!
We can detach, we can be sad, we can be angry, we can be rageful, we can be depressed, we can be happy, at least we can still all BE!
And while we all going around in circles, looking for answers, satisfaction or whatever, we can still all LOVE and SUPPORT each other no matter what!!!!!

Right on, Lisa!

Iris L.

Iris,

I ask myself that same question, if I don't read what will I do. You sound like someone that used to read like I did. I still read the newspaper every morning. I don't recall everything I have read, but I refuse to give that up. We give up so many things if you think about it. I guess one day we won't remember we gave these things up. Just a little humor.

Sharon

I'm also facing what to do, in light of my not remembering much of what I read, or see in a movie. My tentative, subject to change, decision is to keep reading and seeing movies - - just a little less than before. I've cut way back on tv, I used to watch cable news many hours a day, but I've decided it's a waste of my limited resources, and just makes me mad anyway when they talk about politics.

Most of my reading is on the Internet. If something seems important, I'll bookmark it and read it many times over many days, and force it into my brain.

Movies are different, so I keep thinking I'll join NetFlix and watch something multiple times. If I could think of movies I really wanted to see that badly, I would.

As for attitude, there are no "mood police" that will knock down your door and force you to smile. In fact, in view of all the indignities of dementia, I think being able to choose a mood and relax into it are pretty important rights. Besides, trying to maintain an emotional state, based on others telling us only what we want to hear, never works in the long run.

Hey Everybody

Catching up on what has been posted. I too have several books in need or reading. Reading is/was my greatest escape from this crazy world. Now, I read a sentence but, if it has more than one meaning, I'm lost. I was highlighting buzz words and writing them down by paragraphs that I had read. Unfortunately, it's too time consuming and no longer enjoyable.

I was really comfortable in my own skin now, I'm not sure who I am. I no longer work, converse with employees, maintain a rapport with vendors, crunch report deadlines, etc. The only area I truly enjoy is decorating. Trying to be creative, but this is not only expensive, but, I tend to physical assemble things backwards from what I visualized in my mind!
Strange I know.

I had a strange scare this morning. I woke up from a dead sleep. I couldn't catch my breath, my collarbones hurt unbearably and I was sick to my stomach. I think I sat up in the recliner for approx 2 hrs, this happened around 430am. I went back to bed and didn't wake up until after 11am. I can't remember sleeping like that before. I feel really weak, tired. I'm just taking it easy today. Still a bit sore.

My sister in law told me it was probably anxiety? What do you all think?
M

I play what I call sleep games when I can't sleep. I think of things in alphabetical order, like animals, vegetables, countries. I think of the words of old songs. I think of my dream house, or my dream vacation. Things to distract my mind and allow me to sleep.

My sleep is all over the place. I work hard to try to maintain some consistency in my sleep-wake cycle.

Iris L.

Hi Mary et al,
It does sound like you had some severe anxiety but a check-up can't hurt.

As for this reading thing, I, too, was an avid reader. This is gone for me now. I do find that I can listen to books on tape or on CD. Sometimes, I get both to follow along! But, to be honest, I still don't remember a whole heck of a lot of what I read.

Sleeping is another issue. I am now on Seroquel 25mg @ bedtime. Except for a few terrible nightmares (which were pretty terrible) I sleep a good 6 or 7 hours in a row
now! I do wish I could sleep more but sometimes I nap in the day. I tell myself, "self, don't nap!"lol but the next thing I know I'm asleep. Oh well.

Sometimes, I say the "Our Father" prayer over and over until I fall asleep. Whatever works, huh??

Hi to All,
In the book "Still Alice" that I was talking about, Alice detaches but it is done very interestingly. Mary reminded me when she spoke about the book on another forum.
Very interesting!

Hi to All,
I just realized that Sunday when I went to the luncheon to meet with some ladies I used to work with I was very detached and felt very different from everyone there.
Of course, I did take the opportunity to speak with this 25 or so nurses and social workers about EOAD! Me and my BIG mouth!

I was shocked by how little my ex co-workers new about EOAD! But, should I have been? When I was diagnosed in the fall of 2007, I didn't know much about it either and I was an RN?!

I still find it frightening about how few people (including professionals) know about EOAD ( now being referred to as young onset AD) And how little they know!

How do you feel????

Lisa, I personally have talked with a neurologist who said to me, "I know you don't have Alzheimer's because you aren't drooling."

I think the government might be starting to consider AD and other dementias, since there are enough of us to eventually bankrupt Social Security, if better treatments don't come along.

As for what information gets to the public, very few people make those decisions. Nowadays, it seems telling people what they want to hear is more important than telling what they need to know. Which is an attempt at saying that the news media is run for profit now, which it wasn't when we were young.

The young adults of today give me hope. They see prejudice as a bad thing, even if justified by people who believe they're doing the right thing. I'm hoping they'll be the ones who put the world on track. Not in time to help me, but nothing's perfect.

Cheez Alan,
I hope you reported THAT neurologist! He was what I call a "Wack-a-do!" Totally out there! Clueless! Scary!!!

I hope you are right about today's youth. Yes, they help elect a different president. But Most of them look pretty lost to me and many still very prejudiced!

Can you remember when we were younger, Alan? Peace and Love, What happened? I guess money and power happened!?

I wish I had a therapist like you to talk with! Oh wait, I Do! I'm so lucky.
Thanks for being you, Alan.

I didn't report the neurologist, but I did recommend that he read "Alzheimer's from the Inside Out."

As for today's youth, what encourages me is who's discouraged. There recently was a major far Right guy who said he feared for his values, because our young adults don't share his values. His particular crusades involve keeping gay people from legally marrying, and coercing pregnant women to stay pregnant.

Memories . . . there are people I haven't seen in around 35 or 40 years, that I wish I knew how they are now. Not necessarily to talk to, but just to know how they are. I've thought about tracking a few down, but with my AD it just doesn't seem right.

And Lisa, there are lots of great psychotherapists out there, it just sometimes takes shopping around.

Alan,
Please, tell me again about that book "Alzheimer's from the inside out?" I think I have heard of this? Do you know the author?

Alan, I don't have the energy to shop psychotherapists. I'll just keep talking to you and everyone else here! It's my therapy. Although, I still do have some anger issues. Seroquel, anyone????

I think Lisa is right: We're going to have to help ourselves through this.

Is that such a bad idea - being self-sufficient, I mean?

I don't know, y'all. Sometimes I scare myself with ideas I come up with, because I KNOW there are people much smarter than I who could facilitate something like that and make it work.

THIS sure as hell isn't working.

B~

"Alzheimer's from the Inside Out," by Richard Taylor. Check your library, see if you like it.

Bill, it's going to be tough to stick to a self-sufficiency oath, as we continue to decline. Maybe what you mean is, don't take help we don't need? If we can do it, then do it ourselves.

As for people being smarter than we are now, I have a couple of thoughts: First, that's becoming less and less a thing to brag about! Second, those who don't have dementia can't possibly grasp the totality of the experience, so I'm not as interested in what some fully-brained PhD has to say about it, as I am you & Lisa and all the rest.

"A journey of one thousand miles begins with a single step." Confucius

"Help we don't need"?

As far as I can see, there is very little help NOW!

Alan, what if just one of us bought 1 acre of land, and called it, (Hell, I don't know) - "Alzheim"?

They'd spin it in such a bad way, it would be Jim Jones/Branch Davidians all over again.

But what if we went *into* it all "above-board"? No hidden agenda, no religion, no weapons.

Think The Amish (without those damn heaters)

Please, please, please don't think "subterfuge", think "Okay let US try!" instead.

Our own scientists, researchers, doctors, laywers - NOT tied to big business. Just working to find a cure and then share it.

Jesus, Alan! They're willing to let us die! Just by not doing ANYTHING!

I don't really want to do that without putting up a fight do you?

B~

Lisa and others,

After reading some of the past week's posts, I have a perspective to offer.

I have had numerous bouts with depression over the years. In my experience, there are two ways depression can manifest. The most common is the "stinkin thinkin" depression that gets cognitive thought in a mess of bad thoughts.

The other is apathy depression. I think this is more common with AD and medically caused stress. I suffered from a long bout with apathy depression back in 1982-3 until I was treated by a psychiatrist. He diagnosed me as clinically depressed but the only manifestation was the apathy and a serious detaching from life. I was just going through the motions. I had serious cognitive problems along with a total disconnect from emotion.

The silver lining of apathy depression is that there is not enough care to take on any kind of negative or destructive behavior traits.

I agree with the perspective of "eat what you like" because it is not going to kill you. If this is the worst behavior that manifests, then at least it is enjoyable and does not hurt others. It only becomes a problem to those who want to tell you how to live your life.

I do not consider apathy depression as needing of medication since it does not put people at risk.

Just my opinion. Actual mileage may vary.

Dear Mark,
I'm not sure I understand your meaning but I will try to reply. I know that apathy is a part of depression. I think apathy sucks because it robs you (anyone) of joy and caring. So, just because I'm not endangering myself or others, means I should treat this??? I disagree.
I still want a "LUST FOR LIFE!" I don't want to just survive!!! I keep digging deep within myself to find the resources I need to keep from withdrawing from life.
I still want to attend concerts, travel, go to the movies, smell the roses, fight Congress and find a cure for this disease!!
I know, at times, my demon takes over, but I'm still here fighting.
I'm with Bill and Alan and Mary and all to keep fighting!! Keep writing our Congressmen/women, Senators, March on Washington! Let's DO SOMETHING!!!! We're here like sitting ducks letting other people make our decisions. Perhaps I don't always make the right decisions but I'm getting pretty tired of waiting on other people!!

It's time to TAKE ACTION!!!!

Any Ideas??

There's a point I need to make. First, I ask that you take my word for something: The major things that happen in our country are independent of party affiliation. There is an American Way that's endured through all modern administrations.

One of these ways is handling healthcare differently from every other major economic power. All other reasonably successful countries provide universal healthcare. All but the USA. Only here, can a sick person lose everything to medical bills. Doesn't matter who's in office, doesn't matter who's made what speech.

Here, we let the sick person die, if they aren't lucky enough to have lots of money, or be so bad off that Medicare or Medicaid picks it up. But if they're working a mediocre job with no health benefits, what is there?

This is our reality. Our national government's priorities are clear to all who can see. With our national debt at over $10 trillion, I can't conceive of the circumstances where that will change. I eagerly hope to be proven wrong by Mr. Obama, but let's not hold our breath.

Please, anyone, tell me how I'm wrong!!! Please?

Dearest Alan,
Unfortunately, you are not wrong. What you said is 100% true.

So do we sit here and die because that's the American Way?

There MUST be a way to fight and be heard! We can't wait on Mr Obama he's drowning himself.
What can WE do? What can WE do????

Perhaps we need to form our own company? Kind of like what Bill was saying. Our only members being people with dementia or caregivers? Perhaps if we put all our heads together, brain storm so to speak, we can come up with some fresh, new ideas???? Ya know, we're some pretty smart people here!

What do ya think?

Personally, I'm NOT ready to give in or give up!

Who's with me????

Perhaps, I'm re-attaching?! lol.


Oh, I do know it's hard to fight "The System" but what choice do we have??????

Lisa,

I was saying that apathy depression does not warrant treatment or medication since it does not put the patient or others at risk. Treatment for apathy depression should be under the control of the patient.

Depression with suicidal ideation, etc. does put people at risk so it must be treated.

So, I think we agree.

Alan,

If you look at the tax burden in those other counties that provide universal health care, you will find that they are enormously oppressive taxes. Sure, the citizens get free health care, but our quality of care is better, especially for those who can afford the finest health care insurance plans. In those universal health care countries, everyone gets the same level of care unless they can afford to pay for care outside the system, like many in Canada do when they travel to the US.

If you look at the long term viability of the universal health care plans in other countries, they are not sustainable. It is their version of Social Security underfunding. Most universal plans are on a road to collapse in the next two decades. They do not have populations that can support the health care of those as they age. In this country, well over 60& of Medicare spending is for the last 18 months of life. Rationed healthcare will become the legally enforced norm.

I have provided health care insurance for my family out of my own pocket for 29 years. It currently costs me $634 per month for my wife ($212) and myself ($432). She has a $5000 deductible to keep her costs lower.

One of the biggest problems we have is when young people decide to not have health insurance then get coverage when they are older and more prone to illness. If there was a requirement to offer "guaranteed insurability with catastrophic" policies, then the insurance companies could properly spread the cost. Instead, they get nothing from the young and healthy and have restrictions on how they can offer coverage to the rest.

For example, it is illegal to use lifestyle choices to charge more for health insurance. Someone with HIV will cost a minimum of $250,000 during their lifetime, even more as the treatments prolong the lifespan and it progresses to AIDS. Their causative behaviors are protected. Smoking is protected. Alcohol abuse is protected.

My health insurance is in California because I cannot get insured here in Idaho due to pre-existing conditions. My Calif. based Kaiser Permanente health plan is very expensive because it shares the costs of the California workforce that includes a very high percentage of immigrants who have cultural based poor health. Kaiser cannot discriminate against those who have poor health habits. One of Kaiser's biggest issues is over-use of the health care system by people with poor health habits. They show up at the ER with minor illnesses. Kaiser has upped the copays to try to get over-use under control. It has only worked in the ER, not in the clinics. In fact, those who would have gone to the ER do not show up in the clinics. This is very direct evidence of over-use.

One of the biggest problems we have here in the US is the for-profit health care corporations and hospitals. Two decades ago, most hospitals were non-profits. Now they are managed to benefit the stock price, not the patients' health or finances.

With malpractice attorneys like Senator John Edwards suing for every little problem, (his specialty was suing obstetricians and hospitals for cerebral palsy and keeping 40% of the settlement) the doctors have started over-treating for fear of lawsuits.

The administration bite is also way too large a piece of the health care dollar. I watched as payments for my wife's care were eaten up by administrators. The insurance company would notify me that they had disbursed a $6000 check for the surgeons' fees. The plan contract administrator would receive the check, hold the money for 60 days and disburse $4400 to the surgeon. What did the contract administrator do to earn more than 25% of the surgeons fee? Nothing, they even had a 60 day float. Sure, they had "negotiated a 20% discount off the $7200 surgeons' bill to the insurance company, but at what cost.

Our system has many problems but universal health care will have many more.

As brain injured or AD demented, etc. we need to speak up, but we need valid research not blank checks.

If we could get a small portion of the money spent on AIDS research for AD research, we would be in great shape. But, we are not a loud, in-your-face population. The AIDS community goes far beyond just those afflicted wit HIV/AIDS. It includes those with lifestyles that can lead to HIV/AIDS.

We do not have that multiplication factor. For each person with AD, there may be one or two caregivers or concerned family. The caregivers are overwhelmed and the afflicted are incapacitated. We are an invisible population. NIH AD research is currently $515 million for 2008. NIH AIDS research is almost $3 billion, six times as much. Yet, what behavior did the AD sufferers exhibit to contribute to their disease? Nothing.

We need to somehow become a protected class of people. Yeh, dream on.

How is it that the AIDS population, which has a very low ratio of children, get so much money then the AD sufferer with children and grandchildren have nobody speaking up for them in requesting research money?

Maybe we need to keep driving until we finally kill somebody important. If our problems start to cost society in a more visible way, maybe someone will take notice.

Just more rants from a demented mind.

Forget a March on Washington, we need a car rally through Washington with the AD patients driving.

Hear, Hear! Mark incitelful comments.

I know that the current focus on healthcare is bogus without a detailed look at the areas you mentioned, the cost of malpractice insurance and medical over-testing in anticipation of a malpractice case. When Sen. Edwards was running for president, not a single candidtate mentioned what the threat of malpractice does for a doctor's costs and charges. No one wants to bring it up but these costs are a major reason for the high cost of medical care in the US that has nothing to do with actual quality of care.

Also, much money is spent on unreimbursed medical charges, mostly from non-citizens and non-legal residents. Several community hospitals in the Los Angeles County area have been forced to close because their costs were not reimbursed from insurance or government funds. No one ever talks about that.

Doctors are demoralized. I see doctors just doing the minimum effort they have to do. I've been to other countries and I've seen their medical care. The best thing about American medical care is that we do have choices. Right now we have the option of searching for the care we want, if we have the physical ability and the money.

With diseases like AD and dementia, the doctor must monitor the progress of the disease and treat the symptoms and reassure the family. Not too expensive while the patient is still in the home, but very expensive with professional caregivers and placement.

Is anyone in the government or academic world looking at ways to enhance family caregiving at home? ??? I think they're afraid of Alzheimers'.

Iris L.

There is currently discussion about paying family caregivers at home. The concept is rather simple. The cost for care in a care home is outrageous compared with home health care.

Problem is home health care does not quite fill the need. When a family member has to quit a job to care for an ill family member, they have a double whammy. They end up losing their job and working harder for free.

The Medicare system could do quite well if it came up with a subsidy (not full time pay) to help the family member who has to quit their job to care for their loved one. This is currently being discussed.

We need to lobby for this change in rules.

Under current rules, family members cannot get paid.

Hey Mark et al,
I may be wrong but I thought that there was a way for some caregivers to be paid or reimbursed?

Anyone know this??

Lisa I haven't known you for long, and I already love you to death.
I'm with you, I think are voices would be pretty powerful. And we've always got Alan and Tom's sense of humor to fall back on. I've noticed Fred is usually on the ball too
I have a question. What stage is your mom in? Do you find it extremely difficult to function when you're both having a bad day. Are there very many of us mother and daughter types out there?
My toothpaste tasted slimy and funny this morning. When I finished brushing I read the tube. I was brushing with them with cortizone cream. At least my gums don't itch

I don't know about anyone else, I'm certainly not. Just being apreciated would help me. Who would pay you?

Here is an article about caregivers getting paid. It does not mention Medicare or Medicaid. Those are the programs that have been considering pay for family caregivers.

http://www.caregiving.com/2009/01/youre-getting-paid-great-now-get-it-right/

Medicaid in Arizona will pay family for caregiving. Here is an article.
http://www.ahcccs.state.az.us/Services/Programs/SpousesAsPaidCaregivers/SpousesAsPaidCaregivers.pdf

In the third post on the web page in my previous post, the question of Medicare is answered. Medicare does not have a way to compensate family caregivers.

The Medicare issue needs serious legislative pressure to keep those afflicted out of care homes when they can be care at home by family.

The Medicaid provision is charged against any inheritance left by the afflicted person. Medicare does not use the same charge back system of collecting from probate.

Getting caretakers paid might be a workable argument. The government could give caretakers a little, putting off the time it would have to pay a nursing home.

I'd still expect that the government will instead gamble that caretaker response would be practically the same without reimbursement. But we have to try something, or be forgotten.

Dear Tickles,
Thank you so much for your sweet words.
My Mom is further along than I am. I forget the stages now but she's having a lot of difficulty ambulating, having accidents with bowels and bladder, cannot perform ADL's, but, at times, can be pretty lucid!? Of course, Mom does have other health issues.

To answer your question, yes, when we're BOTH having bad days it is VERY difficult! Not only am I confused with things but I, also, get quite impatient sometimes. (I feel horrible when this happens). I try VERY hard to remain patient but it is difficult!!!

I don't know how many other Mother/daughter pairs there are. I just hope my daughter and me don't become one!!!!

Take care. Please, keep posting!

Mark,
Thanks for sharing that info about paid caregivers/

Alan,
We can't stop now! We have to keep yelling and screaming and writing and e-mailing and talking and brainstorming until SOMEONE listens!!