Medical Forum / Diseases and Disorders / Alzheimer's / January 2008
Updated Blog - Please Help
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jbello - 01 Jan 2008 22:43 GMT Please leave comments if you have any answers that may help with my father's medical condition.
J. Bello
My Blog: http://dedicatedtomydad.blogspot.com
My online store:
http://discountshoppingatbellos.com
or to start your own business directly:
http://www.ebiz-u.com?a_aid=69cb1f32
Mary_Gordon@tvo.org - 02 Jan 2008 00:28 GMT I had a look, but if you really want help, you will have to fill in much more in terms of details of how this started, what symptoms he has, what behaviors you are seeing. You basically give us nothing other than the observation that he has something that is progressing and he is confused.
More details, please.
M
jbello - 02 Jan 2008 01:21 GMT On Jan 1, 6:28 pm, Mary_Gor...@tvo.org wrote:
> I had a look, but if you really want help, you will have to fill in > much more in terms of details of how this started, what symptoms he [quoted text clipped - 5 lines] > > M Thanks, i will go back and write more.
J. Bello
Evelyn Ruut - 02 Jan 2008 12:22 GMT On Jan 1, 6:28 pm, Mary_Gor...@tvo.org wrote:
> I had a look, but if you really want help, you will have to fill in > much more in terms of details of how this started, what symptoms he [quoted text clipped - 5 lines] > > M Thanks, i will go back and write more.
J. Bello
May I suggest that you could write right here?
 Signature Best Regards,
Evelyn
MSNTV Networkstestchilli - 02 Jan 2008 17:19 GMT This is a test from WebTV/MSNTV Mod queue.
A customer has said they are unable to post to this group. Could you please respond if you get this message.
Thank you
KJ MSNTV Moderator
A R Pickett - 02 Jan 2008 19:42 GMT I see your post, at about noon Jan 2, MST
 Signature A R Pickett aka Woodstock
Baird Stafford - 03 Jan 2008 10:30 GMT > This is a test from WebTV/MSNTV Mod queue.
> A customer has said they are unable to post to this group. Could you > please respond if you get this message. The article has made it as far as Florida.
Baird
brianna_1938 - 06 Jan 2008 03:21 GMT >Please leave comments if you have any answers that may help with my >father's medical condition. > >J. Bello >Maybe it would be wiser if a doctor would diagnose it. They have to take blood and do other testing. I would try that first. BRI
>My Blog: http://dedicatedtomydad.blogspot.com > [quoted text clipped - 5 lines] > >http://www.ebiz-u.com?a_aid=69cb1f32 jbello - 06 Jan 2008 03:55 GMT > >Please leave comments if you have any answers that may help with my > >father's medical condition. [quoted text clipped - 16 lines] > -- > Message posted viahttp://www.medkb.com They have done all of this....
Thanks.
J Bello
Tumbleweed - 10 Jan 2008 20:58 GMT Well I might be bothered, if a) you could be bothered to post the details here, rather than expecting everyone to scurry off following your links, b) your message had more content than advertising. For all I know, your so called blog will just be a link to a lot more advertising....in this case I suspect its not, but why should anyone take the chance to see? (If I wanted to shop or start a business, following a link from someone's supposed post about Alzheimers is definitely the last place I'd go.)
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
jbello - 12 Jan 2008 01:13 GMT On Jan 10, 2:58 pm, "Tumbleweed" <thisaccountneverr...@yahoo.com> wrote:
> Well I might be bothered, if > a) you could be bothered to post the details here, rather than expecting [quoted text clipped - 10 lines] > email replies not necessary but to contact use; > tumbleweednews at hotmail dot com I plan on deleting most of those ads and updating with ads that fit the content. I am new to this and am just learning. Sorry.
Thanks.
J. Bello
Mary_Gordon@tvo.org - 12 Jan 2008 18:53 GMT I also note J. that you STILL have added nothing to the blog with details of your father's condition, so for a person who claims to want some help or insight, I'm concluding the ads are what you are all about.
M
jbello - 13 Jan 2008 04:45 GMT On Jan 12, 12:53 pm, Mary_Gor...@tvo.org wrote:
> I also note J. that you STILL have added nothing to the blog with > details of your father's condition, so for a person who claims to want > some help or insight, I'm concluding the ads are what you are all > about. > > M I have removed all of those banners off of my blog. I am sorry, I have been painting my son's room. Tomorrow I will write more here. The blog is undergoing changes. Also, I would never make up something like that about my father. I am sorry if you feel that way. I had an argument with a member from another website about my blog and I realized that is how people would pursue me. With some good advice from him, our parting ended quite pleasant, and I have just removed the banners, etc. that do not pertain to my blog this morning. Just finished painting and am getting ready to go to bed. I will have time tomorrow to write. I am trying to get more info. from my mother as to what specific drugs they gave him for the chemo and afterwards, because he has slowly progressed worse...
I hope that you trust me on this because I could really use some help.
Thanks.
J. Bello
http://dedicatedtomydad.blogspot.com
Tumbleweed - 13 Jan 2008 10:53 GMT The 2nd paragraph on your blog (dated jan 1) says "We do know that he does not have Alzheimer's"
Hmm, whats the name of this group again?
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
deerwoodflower@hotmail.com - 13 Jan 2008 22:20 GMT On Jan 13, 4:53 am, "Tumbleweed" <thisaccountneverr...@yahoo.com> wrote:
> The 2nd paragraph on your blog (dated jan 1) says "We do know that he does > not have Alzheimer's" [quoted text clipped - 6 lines] > email replies not necessary but to contact use; > tumbleweednews at hotmail dot com Tumbleweed 2 Words Back off
Evelyn Ruut - 13 Jan 2008 22:40 GMT > On Jan 13, 4:53 am, "Tumbleweed" <thisaccountneverr...@yahoo.com> > wrote: [quoted text clipped - 12 lines] > Tumbleweed > 2 Words Back off Why should he? Tumbleweed has been posting here for years and is a well respected person on this group? Please explain?
 Signature Best Regards,
Evelyn
deerwoodflower@hotmail.com - 14 Jan 2008 03:48 GMT > <deerwoodflo...@hotmail.com> wrote in message > [quoted text clipped - 25 lines] > > Evelyn Evelyn, Sure I will explain.Tumbleweed is ALWAYS so damm rude to posters.And i am not so sure i respect him as much as you do.sorry,barb
Tumbleweed - 14 Jan 2008 07:07 GMT <snippety doo dah>
> Sure I will explain.Tumbleweed is ALWAYS so damm rude to > posters. Look up 'always' in a dictionary. Sometimes, yep, I'm sure I am. This might be one of them.
Given that the only one actual 'fact' the OP has posted* is to state their father does NOT have Az, I think its entirely reasonable to suggest they shouldnt be posting here. GIven that they havent in fact posted anything at ALL here, other than requests to go read their blog, and adverts, I think its VERY reasonable to suggest they shouldnt be posting here. Or would you prefer a newsgroup filled with messages that say, in effect, 'I cant be bothered to post the details here but click this link, then go and trawl through my rambling** blog and see if you can find what I'm referring to, which by the way is NOTHING TO DO WITH ALZHEIMERS' .
If you dont like me, then you can either find and use EddyJeans mythical blocking facility, or kill my posts yourself.
*not that they posted that in this group as such, but in a linked web site ! **there's the rude bit
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
jbello - 15 Jan 2008 03:05 GMT On Jan 14, 1:07 am, "Tumbleweed" <thisaccountneverr...@yahoo.com> wrote:
> <deerwoodflo...@hotmail.com> wrote in message > [quoted text clipped - 28 lines] > email replies not necessary but to contact use; > tumbleweednews at hotmail dot com In case you have not read my previous post, I have removed all content not related to my blog. I was just learning about blogging when I set that all up around my story. I was told by another blog member that is not the way to do it and to put those ads on my web page. I complied with that. I have been busy painting my son's room. He did have definite symptoms of Alzheimer's, but they did blood test. However, we were told by the physician that those test are not always accurate. You do not know me or my family, so stay out of the conversation if you don't want to help. I will post here when I get more information from my mother as far as the exact meds they gave him during chemo and after. We don't know if it could be possibly Alzheimer's at this point, a neurological disorder, etc. I don't want to write the wrong thing, so that is why I was waiting on my mother. The medical records that my mother had copies of were all turned in to a judge for his disability. She is having trouble remembering all of the meds.
Again, I am looking for people to help, not to be such an an AS_! This is a very sensitive situation for me. How dare you think anything but that.
I will post here when I get the information because I am determined to find out what is going on with my father. I will get help from the other group members.
You are just looking for someone to argue with. Furthermore, I really don't think I even need to explain my situation to someone like you. I appreciate the comments from the other members. So, just stay out of it if you have no feelings.
J. Bello
jackieon12@gmail.com - 15 Jan 2008 13:51 GMT He did have
> definite symptoms of Alzheimer's, but they did blood test. However, we > were told by the physician that those test are not always accurate. There is no blood test to confirm the diagnosis of AD. Diagnosis can only be made post-mordem. the blood test is used to rule out other causes of cognitive decline such as Vit B12 def, thyroid disease, anemia, metabolic abnormalities. A CT scan or MRI of the brain is used to rule out vascular disease or mini strokes, tumors, swelling or other brain disease. In the absence of other possible reasons for the decline in cognition, a diagnosis of alzheimer's disease is made if the symptoms fit.
There are plenty of qualified clinicians who can diagnose AD. Most primary care physicians are skilled in diagnosing as It is not rocket science at this point. Get you father in to see one.
Jackie
Adelle - 15 Jan 2008 15:12 GMT > He did have >> definite symptoms of Alzheimer's, but they did blood test. However, we [quoted text clipped - 16 lines] > > Jackie We also found a PET scan to be helpful. It showed what part(s) of the brain is(are) atrophying. Dementia related to causes which shrink the more posterior parts of the brain have a different progression that dementias related to shrinking of the frontal lobes. In the latter, certain medications typically used to treat hallucinations and agitation, can actually make things worse. It's hard to get a PET scan ordered, though.
Also - I'd beg to differ with Jackie. A lot of primary care physicians miss diagnosis because our loved ones are very good at holding it together and seeming fully rational for the 5 to 10 minutes of an exam. It's only over the course of time that things become obvious. The 'gold standard' testing is a 2 day Neuro-psych exam done by an experienced geriatrician psychiatrist. Very hard to come by. But, if all the blood tests come out negative and its not something like Normal Pressure hydrocephalus (a physical condition of water on the brain interfering with function), getting a referral for a neuro-psych exam would be a huge start.
You seem reticent to post details. Not sure whether that's because of time, concern about having too much info 'out there' beyond your control, or because you aren't privy to stuff. But sparse info is also used by 'trolls' (people who just want to yank your chain for fun). If people respond in a less than effusive manner, its because many of us have been here for years. We've seen good people get good advice. We have also had to deal with people who just want to waste our time. On a flat screen in print, one cannot get a feel for the intentions of the people we are dealing with. We can only respond to what's in front of us.
If you really want help from us, you need to give us enough info to figure out how to actually help out.
Adelle
jbello - 16 Jan 2008 00:39 GMT > <jackieo...@gmail.com> wrote in message > [quoted text clipped - 54 lines] > > - Show quoted text - Adelle,
Time is an issue for me because I have a six-year-old boy and he keeps me very busy. Another problem for me is lack of appropriate medical information to give because I am just stating what I see, what my mother tells me and what my sisters tell me. I also found out that they sent off something to a lab that grows genes, but I do not know what for. I responded a message to Jackie with some more information.
Also, I completely understand how you all would feel about the way I started out my posting here. I do apologize for that. I have actually cancelled that website, but I still have my blog, which I have removed all of those banners off. E-biz said the website would remain active since I paid for 6 months, I guess. I will not be posting any links like that here ever again. I want nothing here but advice and help. Every time I find out more from my mother or I think of something that would be helpful, I will post here. I appreciate all of you reading.
J. Bello (Jill)
sweetpickleNO@SPAMknology.net - 16 Jan 2008 02:19 GMT Jill, I hope we can be of some help to you. It can be very frustrating. Gwen
On Jan 15, 9:12 am, "Adelle" <adNOsta...@SPAMcomcast.net> wrote:
> <jackieo...@gmail.com> wrote in message > [quoted text clipped - 62 lines] > > - Show quoted text - Adelle,
Time is an issue for me because I have a six-year-old boy and he keeps me very busy. Another problem for me is lack of appropriate medical information to give because I am just stating what I see, what my mother tells me and what my sisters tell me. I also found out that they sent off something to a lab that grows genes, but I do not know what for. I responded a message to Jackie with some more information.
Also, I completely understand how you all would feel about the way I started out my posting here. I do apologize for that. I have actually cancelled that website, but I still have my blog, which I have removed all of those banners off. E-biz said the website would remain active since I paid for 6 months, I guess. I will not be posting any links like that here ever again. I want nothing here but advice and help. Every time I find out more from my mother or I think of something that would be helpful, I will post here. I appreciate all of you reading.
J. Bello (Jill)
jbello - 15 Jan 2008 23:12 GMT On Jan 15, 7:51 am, jackieo...@gmail.com wrote:
> He did have > [quoted text clipped - 17 lines] > > Jackie My father has had MRIs, CT scans, etc. A neurologist did see that he had some mini strokes, but not to where this would be making him like he is. One thing they thought it could possibly be was when he got the cancer your good cells automatically start trying to kill the bad cells. One doctor seemed to think that even though the cancer is gone, he went through the chemo, etc., his good cells are destroying the good cells, if that makes any sense. My father can speak, but I notice he chooses not to a lot because I think he is afraid that he is going to yell at someone. He is getting to the point that he does not groom himself very well the way he used to. He does not pay attention to his clothes, like what is appropriate to wear... He does not even look like he brushes his hair sometimes when I see him. One doctor mentioned something about his protein level was extremely high. They have done spinal taps also. There is an injection that they wanted to give him, but there is a very high risk of having a major stroke and my father is scared he will be worse off than he is now. I just cannot understand why these physicians cannot pin point what is wrong. It is so frustrating and hard for me, my sisters and my mother.
J. Bello
jbello - 16 Jan 2008 00:08 GMT On Jan 15, 7:51 am, jackieo...@gmail.com wrote:
> He did have > [quoted text clipped - 17 lines] > > Jackie Jackie,
About 30 minutes or so ago I posted a long message to you about some information about my father. Why is it gone?
J. Bello
Adelle - 16 Jan 2008 17:13 GMT On Jan 15, 7:51 am, jackieo...@gmail.com wrote:
> He did have > [quoted text clipped - 17 lines] > > Jackie Jackie,
About 30 minutes or so ago I posted a long message to you about some information about my father. Why is it gone?
J. Bello
Jill, it was only gone on your news reader. That's the vagaries of the internet. It appeared on Comcast twice. If you are not sure whether it's your reader or everyone's, go to Google Groups and look for your message on alt.support.Alzheimer's through the Google newsreader. They are a pretty reliable source.
The symptoms you are describing like the loss of inhibition, and the losing of executive functioning (telling you how to go about doing things like the steps of taking a shower, dressing, doing hair...) are typical when there is a loss of function in the frontal lobes. It was the kind of dementia my late FIL had. His was caused, we think, by vascular issues as he'd had a cardiac and vascular condition. But there are inherited forms of Frontal lobe dementia. I didn't know they could be found with gene markers, but that could be new - or experimental.
Also typical of this kind of loss is problems speaking. Sometimes it starts with not being able to retrieve the word you want to use. It is typical for our affected love ones to say, "oh, you know that thing I mean, the thing you use when...Oh...anyway," and then go on in the conversation. It may be your dad is not speaking a lot for multiple reasons - not only can he not remember what tone of voice to use, he may also be finding he can't find the words he wants to say ('its on the tip of my tongue').
There are many, many causes for dementia. And very few are so clear-cut that you can diagnose them specifically. So diagnosis of dementia is a process of excluding what you can and making 'best guesses' from what you have left that fits the facts. Its the realm of where medicine moves from science to 'art.' And there may never be a definitive diagnosis, unless an autopsy is done after death.
I did a quick Google search for autoimmune dementia, where the body's own immune system causes the dementia. What I got was some fairly 'medically intense' abstracts filled with terms I couldn't follow (and I am an attorney, with an auto-immune disease, who clerked for a Personal Injury firm back in law school and read lots of medical files. Plus went through the loss of both parents from rare cancers. Medical terminology does *not* intimidate me). But it seems to be a documented phenomenon, so maybe the docs aren't too wrong here. Maybe some time while your son is in school, you can wade through such a search and find something more understandable.
Wishing you strength and patience as you walk this road.
Adelle
jbello - 16 Jan 2008 22:26 GMT > On Jan 15, 7:51 am, jackieo...@gmail.com wrote: > [quoted text clipped - 72 lines] > > - Show quoted text - Last night my mother called. They don't like to tell me a whole lot because I suffer from anxiety really bad. Anyway, she called and told me that my father had underwent a PET scan that morning of his entire body. I told her that I had someone online that had just mentioned the PET scan. They are supposed to get the results back today, but I am still waiting for her to call me. She also told me that the oncologist told her my father's cancer cell protein levels were elevated, (if that makes any sense)?? He is undergoing his routine scope again next week. I will just die if he has cancer again along with all his other medical problems.
Jill
Evelyn Ruut - 16 Jan 2008 22:44 GMT On Jan 16, 11:13 am, "Adelle" <adNOsta...@SPAMcomcast.net> wrote:
> "jbello" <jbello....@gmail.com> wrote in message > [quoted text clipped - 87 lines] > > - Show quoted text - Last night my mother called. They don't like to tell me a whole lot because I suffer from anxiety really bad. Anyway, she called and told me that my father had underwent a PET scan that morning of his entire body. I told her that I had someone online that had just mentioned the PET scan. They are supposed to get the results back today, but I am still waiting for her to call me. She also told me that the oncologist told her my father's cancer cell protein levels were elevated, (if that makes any sense)?? He is undergoing his routine scope again next week. I will just die if he has cancer again along with all his other medical problems.
Jill
Jill, my dear, be hopeful and stay calm as it probably isn't good for you to get too upset over something as yet unknown. The PET scan is a good idea, because it measures the brain, and if it is alzheimers, there is usually some shrinkage that can be seen. It would seem that the doctors really are working to diagnose your dad. Give them a chance and hopefully they will be able to give you and your mom a clearer idea of what the problem is. In the meanwhile..... we do understand around here. We've all been through the various tests etc. with our loved ones.
 Signature Best Regards,
Evelyn
jbello - 16 Jan 2008 22:52 GMT > On Jan 16, 11:13 am, "Adelle" <adNOsta...@SPAMcomcast.net> wrote: > [quoted text clipped - 118 lines] > > - Show quoted text - Thank you, but it seems that this has been going on for years. I just want my dad back. I am having a hard time trying to understand why are these tests just being done now... I just called my mother and they have still not heard back from the doctor about his PET scan.
As soon as my mother calls me with the results. I will let you know.
Thanks again. I really think it was meant for me to find this group. I guess these days it is hard to believe that people you don't know really would care about you and your family.
Jill
Adelle - 17 Jan 2008 04:51 GMT On Jan 16, 4:44 pm, "Evelyn Ruut" <evelyn.r...@gmail.com> wrote:
> "jbello" <jbello....@gmail.com> wrote in message (snipped much back and forth exchange of info)
>Thank you, but it seems that this has been going on for years. I just >want my dad back. I am having a hard time trying to understand why [quoted text clipped - 8 lines] > >Jill Dear Jill;
Please take comfort in the fact that unlike for many of us here, the medical staff working with your father seem to be acting aggressively to find out what is happening and why. Your family is being taken very seriously. Mostly we hear practitioners saying that they can't see anything out of the ordinary. Knowledge can be power. It can be your friend. See if your Dad has signed a HIPPA release so you can speak to the medical staff directly. It will help you get info without the 'family filter.' But only do so if you can handle that it will be difficult and perhaps scary.
You have another choice. You can be your own best friend, too. Rather than being 'the informed caretaker,' you can also choose to simply be a source of unconditional love for your dad and the rest of the caretakers. If you *know* you are going to obsess and affect your own health, you can make the choice to not pursue information, but still be part of the process. You have to find your place of coping and acceptance, of your dad's illness - whatever that may turn out to be - and of your own truth and limitations.
Know that we do know how you feel. Everyone here has either lost a Loved one to a dementia or is currently caring for someone with dementia. Most of us have had other deaths in our families as well. My Dad lived with/was treated for Multiple Myeloma for 6 years (died February 2000). My Mom had Fibrocarcoma and was treated for almost 4 (died Sept 07). My FIL had signs of dementia for what we think was close to 8 years before the last crisis which brought about his death (died July 2002).
We all want them *back* from where they are; to be the person we knew, loved, laughed with, fought with.... I'm lucky that my mom was herself until the last few days. My FIL wasn't himself for a long time, maybe six years. And my Dad, well - personality wise, he was mostly himself, with a few vacancies. Sadly, once dementia is fully present, we don't get them completely back. We may get flashes for a minute, an hour, some lucky ones get a whole day.
I'm sorry you need to be here, but glad you found us. Try to not obsess too much. Keep yourself busy with tasks that engage your mind as well as your body. That does help.
Adelle
Evelyn Ruut - 17 Jan 2008 14:04 GMT On Jan 16, 4:44 pm, "Evelyn Ruut" <evelyn.r...@gmail.com> wrote:
> "jbello" <jbello....@gmail.com> wrote in message > [quoted text clipped - 134 lines] > > - Show quoted text - Thank you, but it seems that this has been going on for years. I just want my dad back. I am having a hard time trying to understand why are these tests just being done now... I just called my mother and they have still not heard back from the doctor about his PET scan.
As soon as my mother calls me with the results. I will let you know.
Thanks again. I really think it was meant for me to find this group. I guess these days it is hard to believe that people you don't know really would care about you and your family.
Jill
Hi Jill,
This newsgroup saved us too when my mother in law got alzheimers. There are a few people still posting here who posted then. I can vouch for them being caring and supportive, and that they give you sound advice. Adelle has given you a wonderful answer in this thread as I see, so I won't go over the things she addressed again, only to endorse what she said.
The one thing I wanted to address is where you said you wanted your Dad back. I understand and your words struck my heart too. It is the saddest thing of all to lose someone we have really loved. When someone dies of most other illnesses, they are often gone suddenly. When someone dies of alzheimers, they have been dying by inches for years, and death almost comes as a release for the person and their family.
It is almost as though the person, and who they are, is going to another world thought by thought, slowly over time, till they make that final step over the threshold and are totally gone.
When my mother in law developed alzheimers she never came back to being fully herself, but there were tiny glimpses here and there. We were grateful for those tiny glimpses when they managed to occur, and often they came at times when we really needed that little window to be assured that it was really her we were caring for.
I know that statement probably sounds a bit weird, but it is the only way I can describe it. When and if you visit your dad, you will sometimes see those tiny glimpses of the person he was before.
Also I wanted to repeat that it is a very good thing they are checking him out so thoroughly. There are other causes of dementia that are not alzheimers..... some that are actually reversible. I always urge people to get ALL possible testing done early, to detect as much as is medically possible, exactly what their loved one is suffering from. But better late than never.
 Signature Best Regards,
Evelyn
jbello - 19 Jan 2008 02:57 GMT > On Jan 16, 4:44 pm, "Evelyn Ruut" <evelyn.r...@gmail.com> wrote: > [quoted text clipped - 192 lines] > > - Show quoted text - Evelyn,
I only have the strength right now to write a brief summary to you. Mentally I cannot deal with the news I found out this morning about my father's PET scan results. He survived the colon cancer, probably four years out now. PET scan showed cancer all over his stomach and liver. I broke down at work when my sister called to tell me. We may all get together Sunday and tell my father. He does not know yet. This is unbelieveable. I feel like this is a bad dream. How can we look at him and tell him such a horrible thing?
Jill
deerwoodflower@hotmail.com - 19 Jan 2008 03:53 GMT > > "jbello" <jbello....@gmail.com> wrote in message > [quoted text clipped - 208 lines] > > Jill Jill, My heart breaks for your family.Are you of faith at all cause thats all that gets me through the things we have to endure.Spend much time with your dad now.And just love him.Thats what he will need.barb
jbello - 19 Jan 2008 14:17 GMT On Jan 18, 9:53 pm, "deerwoodflo...@hotmail.com" <deerwoodflo...@hotmail.com> wrote:
> > > "jbello" <jbello....@gmail.com> wrote in message > [quoted text clipped - 215 lines] > > - Show quoted text - We are trying real hard to have faith right now. It is hard not to question why God would do something like this. I know we are not supposed to question God, but at a time like this how do you not?
Jill
Evelyn Ruut - 19 Jan 2008 16:47 GMT On Jan 18, 9:53 pm, "deerwoodflo...@hotmail.com" <deerwoodflo...@hotmail.com> wrote:
> On Jan 18, 8:57 pm, jbello <jbello....@gmail.com> wrote: > [quoted text clipped - 285 lines] > > - Show quoted text - We are trying real hard to have faith right now. It is hard not to question why God would do something like this. I know we are not supposed to question God, but at a time like this how do you not?
Jill
Jill, everyone and everything that is alive, one day dies. Flowers, people, kings and emperors as well as poor, rich, young and old. It is the way it is.
 Signature Best Regards,
Evelyn
Evelyn Ruut - 19 Jan 2008 12:58 GMT On Jan 17, 8:04 am, "Evelyn Ruut" <evelyn.r...@gmail.com> wrote:
> "jbello" <jbello....@gmail.com> wrote in message > [quoted text clipped - 221 lines] > > - Show quoted text - Evelyn,
I only have the strength right now to write a brief summary to you. Mentally I cannot deal with the news I found out this morning about my father's PET scan results. He survived the colon cancer, probably four years out now. PET scan showed cancer all over his stomach and liver. I broke down at work when my sister called to tell me. We may all get together Sunday and tell my father. He does not know yet. This is unbelieveable. I feel like this is a bad dream. How can we look at him and tell him such a horrible thing?
Jill
Dear Jill,
I am SOOOO sorry to hear this sad news. I hope you and your family find the courage and the love to get through this difficult time. ((((((((( hugs ))))))))
 Signature Best Regards,
Evelyn
jbello - 19 Jan 2008 14:24 GMT > On Jan 17, 8:04 am, "Evelyn Ruut" <evelyn.r...@gmail.com> wrote: > [quoted text clipped - 249 lines] > > - Show quoted text - Do you know how you tell a loved one he is going to die?
Jill
Evelyn Ruut - 19 Jan 2008 16:46 GMT On Jan 19, 6:58 am, "Evelyn Ruut" <evelyn.r...@gmail.com> wrote:
> "jbello" <jbello....@gmail.com> wrote in message > [quoted text clipped - 269 lines] > > - Show quoted text - Do you know how you tell a loved one he is going to die?
Jill,
Well, you find the gentlest way possible. You DON'T wail and cry for your own sorrow, you try and keep your head. This is about him now, not about you.
Here is what Buddha said; "Everything that is born, also dies. Anything that begins, ultimately ends, and change is the nature of our existence."
If you think about that, ....."every thing that is born, one day dies." We have all been dying since the day we were born, and we will be dead a long time.
You enjoy the person and do everything in your power to make them happy, comfortable, at peace and non emotional. If they cry you comfort them. If you cry, you try to hide it. Make his last days of life filled with love and peace.
Take it ONE minute at a time, and ONE day at a time. Don't be burying him before he is gone, but enjoy the last of his time with you.
MOST important of all, CONTACT HOSPICE! They will have all the resources your family needs right now. This is what they do. It is their only purpose.... helping families whose loved ones are passing on.
 Signature Best Regards,
Evelyn
Dennis P. Harris - 20 Jan 2008 04:44 GMT > MOST important of all, CONTACT HOSPICE! They will have all the resources > your family needs right now. This is what they do. It is their only > purpose.... helping families whose loved ones are passing on. what she said. and they can help not only with caring for him, but they have counselors who can help the family inform him of his diagnosis. it's not unlikely that he already knows, since the body often informs even those with impaired cognition that the end is near.
some of his impairment may be due to liver malfunction due to the cancer, and poor oxygen uptake if the tumors are in his lungs.
Adelle - 19 Jan 2008 18:40 GMT On Jan 19, 6:58 am, "Evelyn Ruut" <evelyn.r...@gmail.com> wrote:
> "jbello" <jbello....@gmail.com> wrote in message (Much snipped)
>Do you know how you tell a loved one he is going to die? > >Jill Dear Jill,
I am so sorry to hear this news. It is devastating.
We walked this path with my mom just last summer. Let me preface this by saying, mom was in her right mind when we did this - sharper than half the staff. In her final week, tumors in her brain got large enough to cause problems and we had one day of obvious dementia before she started sleeping most of the time.
But about 6 weeks before that time, we had the palliative care team (slightly different than, but includes, pain management) and her oncologist meet altogether with her to tell her the current treatment didn't seem to be working, there were no more treatment options, and ask her how she wanted to proceed? Did she want aggressive care or focus on pain management (which could best be done for her in an in-patient hospice setting)? Eventually, she settled on hospice care. It was hard. We cried. But we acknowledged that we needed to continue making choices despite how painful they were and kept trying for what would give her the best pain control for what little time she had left.
So firstly - have they tested the cancer to see if its the same; done a biopsy? If yes, would it be responsive enough to treatment to make it worthwhile to do chemo/radiation to reduce symptoms and give him more time? Would such treatment improve his mental status so the family could get instructions from him about what he wants to do? Once you have those answers, would doing the palliative treatment buy him quality of life for a while, or would the treatment make him too sick to enjoy what time he has left? All these things need to be figured out before you tell him he's going to die sooner than he expected.
So how do you do this? As lovingly as possible. Say they found the cancer he had is back (unless its a completely different cancer). Talk about what treatment might be available, but say it's spread so extensively there is nor cure this time; no chance at remission. If he is capable of making decisions, ask him what he wants. How does he want to live out the time. Remember, if he has gone through cancer treatment before, the idea that he might die of cancer has already been part of his thinking. He is not out of that five year span where they talk about 'cure.' So finding he didn't dodge the bullet after all may not be a huge shock.
When you are with him, focus on him, his needs, his desires (when not affected by dementia). Outside the room, do the emotional work you need to go through to process this. Its ok to cry in front of him. It's sad and painful. But while you are with him, it needs to be you taking care of him. It's part of honoring your parents. Honoring his life and his process towards leaving it are among the most amazing gifts you can give your dad and yourself. You can tell him and show him that you will be ok when he's gone. You will hurt and miss him. But he raised you well and you will go on being a good parent to your kids, a good person, etc.
We each had to take turns telling Mom her job was done. That she had done a great job, and she didn't need to keep enduring the pain just to keep taking care of us. Telling you this is actually harder and sadder than when I actually did it. Why? At the time, I was focused on wanting her to be free of horrible pain. It was easy to tell her I wanted her to have relief, no matter how that might happen. You might surprise yourself with your strength. Leave yourself open to knowing you are capable, loving, and resilient; you will do what needs to be done, what should be done, and will come out the other side.
Wishing you strength as you go through this difficult time.
Adelle
jbello - 19 Jan 2008 21:48 GMT > On Jan 19, 6:58 am, "Evelyn Ruut" <evelyn.r...@gmail.com> wrote:> "jbello" <jbello....@gmail.com> wrote in message > [quoted text clipped - 68 lines] > > Adelle Adelle,
Thank you so much. You have touched my heart. I am going to read this to my sisters and my mother.
We decided to meet with the oncologist Monday, although we are very angry with this doctor. My father started off with colon cancer years ago. It was confined to his colon and they removed the tumor. He underwent the chemo for any lingering cells. I guess about one year after that he started showing signs of what we thought was Alzheimer's, dementia, etc. All doctors tried to blame it on the chemo. At this point we do know it is not back in his colon, but in his stomach and liver, maybe more places. It was a short conversation my mother had with the oncologist over the phone and the only reason the oncologist called with the results Friday instead of calling them into the office was because she did not want him to undergo the colonoscopy scheduled early Monday morning. She told my mother that it was all over his stomach and his liver and the liver cancer was uncurable.
After we talk to the oncologist Monday. We will somehow present this to my father and ask him what he wants to do. I know that he will say he wants to try treatment. I just know him, because he will not want to leave us no matter how sick it makes him. If he chooses treatment to prolong his life, we will take him to M.D. Anderson in Houston immediately.
I thank you for all of your wisdom and encouragement. Seems as though you are an angel sent to me to help me through this.
Jill
Dennis P. Harris - 20 Jan 2008 04:54 GMT > We decided to meet with the oncologist Monday, although we are very > angry with this doctor. My father started off with colon cancer years [quoted text clipped - 3 lines] > Alzheimer's, dementia, etc. All doctors tried to blame it on the > chemo. it's very possible that it was the chemo. remember that chemo is a poison that they use to attempt to target only cancer cells, but it doesn't always work that way. some aggressive forms of chemo are indeed known to cause brain damage.
i think your anger with the oncologist is probably misplaced. the current state of oncology is still an art, not a complete science --- and even the latest and "best" treatment is not always successful. my dad's chemo for colon cancer worked for 3 years and then suddenly stopped working in the same way, with invasive liver tumors.
once again, i suggest contacting your local hospice for help in approaching your father regarding his treatment choices. you may find that he may not want to go through another round of chemo, especially if his choice is a very painful treatment that has little or no chance of success vs. pain relief.
Dennis P. Harris - 19 Jan 2008 07:46 GMT > Thank you, but it seems that this has been going on for years. I just > want my dad back. I will say what others have not, but what needs to be said:
Denial is not a river in Egypt.
Dementias are a one way street, an inevitable decline. Some, like vascular dementias, may result in the patient's condition staying stable for a very long time, but most result in a slow and irreversible decline.
If this causes you anxiety, I suggest that you need to see a therapist and get some meds to treat your anxiety, because you are going to have to deal with your father's inevitable decline. A Hospice bereavement counseler may also be able to help.
You need to accept that hard fact that you cannot get your Dad back, that in many ways he's already gone. The worst thing about dementias is that the body is still there but the person you knew and loved is gone, which results in grieving for the loss before the person dies.
I'm sorry, but those are the facts, and you and your family need to get used to them.
jbello - 19 Jan 2008 14:23 GMT On Jan 19, 1:46 am, NO_SPAM_TO_dphar...@gci.net (Dennis P. Harris) wrote:
> On Wed, 16 Jan 2008 14:52:31 -0800 (PST) in > [quoted text clipped - 23 lines] > I'm sorry, but those are the facts, and you and your family need > to get used to them. I have been on medication since I was 18 years old. Had to get on more medicine after I was 30 for postpartum depression. No matter what amount of medicine I am on, this is my father and it hurts. Like I posted previously I thought we were about to get results about some neurological disorder, instead it showed cancer all over his stomach and liver, after he has survived the colon cancer.
Jill
Evelyn Ruut - 19 Jan 2008 16:39 GMT On Jan 19, 1:46 am, NO_SPAM_TO_dphar...@gci.net (Dennis P. Harris) wrote:
> On Wed, 16 Jan 2008 14:52:31 -0800 (PST) in > [quoted text clipped - 24 lines] > I'm sorry, but those are the facts, and you and your family need > to get used to them. I have been on medication since I was 18 years old. Had to get on more medicine after I was 30 for postpartum depression. No matter what amount of medicine I am on, this is my father and it hurts. Like I posted previously I thought we were about to get results about some neurological disorder, instead it showed cancer all over his stomach and liver, after he has survived the colon cancer.
Jill
Jill, I know this is no comfort to hear, but I knew another person, a friend who had cancer, and it was all through her body as well. She acted a lot like she had alzheimers, and it was because the cancer had also spread into her brain.
 Signature Best Regards,
Evelyn
jackieon12@gmail.com - 20 Jan 2008 02:33 GMT > Jill, I know this is no comfort to hear, but I knew another person, a friend > who had cancer, and it was all through her body as well. She acted a lot [quoted text clipped - 7 lines] > > - Show quoted text - Hi Jill,
sorry about the diagnosis. Colon cancer does not metastasize to the brain, but frequently spreads to the liver and lung. His cognitive decline could be the result of metabolic changes as the result of the cancer.
Once metastasized, the prognosis becomes considerably poorer.
You may want to seriously think about getting hospice in for you and your family sooner than later to help you all cope with your father's end of life.
Jackie
jbello - 16 Jan 2008 00:31 GMT On Jan 15, 7:51 am, jackieo...@gmail.com wrote:
> He did have > [quoted text clipped - 17 lines] > > Jackie My father has had MRIs, CT scans, etc. A neurologist did see that he had some mini strokes, but not to where this would be making him like he is. One thing they thought it could possibly be was when he got the cancer your good cells automatically start trying to kill the bad cells. One doctor seemed to think that even though the cancer is gone, he went through the chemo, etc., his good cells are destroying the good cells, if that makes any sense. My father can speak, but I notice he chooses not to a lot because I think he is afraid that he is going to yell at someone. He is getting to the point that he does not groom himself very well the way he used to. He does not pay attention to his clothes, like what is appropriate to wear... He does not even look like he brushes his hair sometimes when I see him. One doctor mentioned something about his protein level was extremely high. They have done spinal taps also. There is an injection that they wanted to give him, but there is a very high risk of having a major stroke and my father is scared he will be worse off than he is now. I just cannot understand why these physicians cannot pin point what is wrong. It is so frustrating and hard for me, my sisters and my mother.
J. Bello
Dennis P. Harris - 19 Jan 2008 07:35 GMT > He did have > definite symptoms of Alzheimer's, but they did blood test. However, we > were told by the physician that those test are not always accurate. get a different doc. there is no such thing as a blood test for alzheimer's.
jbello - 19 Jan 2008 14:19 GMT On Jan 19, 1:35 am, NO_SPAM_TO_dphar...@gci.net (Dennis P. Harris) wrote:
> On Mon, 14 Jan 2008 19:05:50 -0800 (PST) in > [quoted text clipped - 4 lines] > get a different doc. there is no such thing as a blood test for > alzheimer's. They send something off to grow genes and we had to wait for weeks for the results. They say the results showed No Alzheimer's.
Jill
Tumbleweed - 19 Jan 2008 18:15 GMT >On Jan 19, 1:35 am, NO_SPAM_TO_dphar...@gci.net (Dennis P. Harris) >wrote: [quoted text clipped - 6 lines] >> get a different doc. there is no such thing as a blood test for >> alzheimer's.
>They send something off to grow genes and we had to wait for weeks for >the results. They say the results showed No Alzheimer's.
>Jill Thats not possible, I suspect you are being fed misinformation as it trickles down several levels of your family to you and gets scrambled on the way down. There are only two ways you can show there is no Az; a) Postmortem, b) Some other cause shown to be the case (certain vitamnin deficiencies, strokess, for example)
If no other cause has been shown to be operating at the moment, then Az cannot be ruled out, and as Dennis says, it can't be ruled out by a blood test unless that shows, for example, another cause. Which doesn't seem to be the case here.
Possibly what they may have done is look for a gene for Early Onset Az (EOAD) which does run in some(but very few) families. This is very* rare, and the fact that has been ruled out says nothing about whether 'normal Az' is operating.
* very very very rare, unless you are in a family with a history of it.
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
jbello - 19 Jan 2008 21:35 GMT On Jan 19, 12:15 pm, "Tumbleweed" <thisaccountneverr...@yahoo.com> wrote:
> >On Jan 19, 1:35 am, NO_SPAM_TO_dphar...@gci.net (Dennis P. Harris) > >wrote: [quoted text clipped - 33 lines] > email replies not necessary but to contact use; > tumbleweednews at hotmail dot com Tumbleweed,
I found out we do not have a family history of it.
If you have read my latest post, they did a PET scan, bare with me because even though I am a medical transcriptionist, I am not an expert on meanings of medical terms, and found stomach cancer and liver cancer in my father. One physician says it just started. Another physician said he believes something with the B12, protein level that has been elevated, and his cells that have been trying to fight the cancer cells on their own these last few years is what has been making my father falling and having these neurological symptoms. The cells are killing other cells in his brain....??
I am sorry we got off to a rough start. I do realize who it looked by me posting all of that stuff. I have stopped that and removed all those banners and replaced them with resources for colon cancer and chemo.
And I do value everyone's opinion. I am going through hell right now.
Jill
Tumbleweed - 19 Jan 2008 18:04 GMT >You do not know me or my family, so stay out of the conversation if >you don't want to help. ROFLMAO ! If you don't want to get people's opinions, start by NOT posting your blog where billions of people can read it, and then NOT posting again on a news group read by at least several people!
If you don't like reading my responses, such as criticising your adverts, and criticising you for not actually posting anything but links to your blog in this newsgroup, block me or dont respond, it takes two to make an argument.
And if you mean you only want replies where people agree with you , I can't see that happening.
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
Evelyn Ruut - 14 Jan 2008 11:55 GMT >> <deerwoodflo...@hotmail.com> wrote in message >> [quoted text clipped - 30 lines] > Sure I will explain.Tumbleweed is ALWAYS so damm rude to > posters.And i am not so sure i respect him as much as you do.sorry,barb Barb,
Sorry you feel that way. I have been reading his posts here for years, and yes, he can be a bit brusque, but I never found him to be mean spirited.
 Signature Best Regards,
Evelyn
Dennis P. Harris - 19 Jan 2008 07:34 GMT On Sun, 13 Jan 2008 19:48:32 -0800 (PST) in alt.support.alzheimers, "deerwoodflower@hotmail.com"
> Sure I will explain.Tumbleweed is ALWAYS so damm rude to > posters.And i am not so sure i respect him as much as you do.sorry,barb this is usenet. get over it.
the person posting was a troll, who only wanted folks to read her/his ads on the blog.
sweetpickleNO@SPAMknology.net - 13 Jan 2008 23:51 GMT Tumbleweed, this group is for anybody who has problems with Alzheimers, or with anything similar to Alzheimers--there are several things that present as Alzheimers but need different treatment. Those caregivers are welcome here. Gwen
> The 2nd paragraph on your blog (dated jan 1) says "We do know that he does > not have Alzheimer's" > > Hmm, whats the name of this group again? Tumbleweed - 14 Jan 2008 07:09 GMT > Tumbleweed, this group is for anybody who has problems with Alzheimers, or > with anything similar to Alzheimers--there are several things that present > as Alzheimers but need different treatment. Those caregivers are welcome > here. > Gwen Well, who knows what the person in question has, since the only actual thing the OP has said is that they dont have Alzheimers,and they dont seem capable of every getting round to posting anything such as symptoms.
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
jackieon12@gmail.com - 14 Jan 2008 14:43 GMT On Jan 14, 2:09 am, "Tumbleweed" <thisaccountneverr...@yahoo.com> wrote:
> <sweetpickl...@SPAMknology.net> wrote in message > [quoted text clipped - 15 lines] > email replies not necessary but to contact use; > tumbleweednews at hotmail dot com Tumbleweed might have been harsh, but is right on target here. If J truly wants help for his father, who may have symptoms mimicking alzheimers, then J, please post your story here.
I won't follow your links and read your blogs to find the information. Jackie
Evelyn Ruut - 13 Jan 2008 12:23 GMT On Jan 12, 12:53 pm, Mary_Gor...@tvo.org wrote:
> I also note J. that you STILL have added nothing to the blog with > details of your father's condition, so for a person who claims to want > some help or insight, I'm concluding the ads are what you are all > about. > > M I have removed all of those banners off of my blog. I am sorry, I have been painting my son's room. Tomorrow I will write more here. The blog is undergoing changes. Also, I would never make up something like that about my father. I am sorry if you feel that way. I had an argument with a member from another website about my blog and I realized that is how people would pursue me. With some good advice from him, our parting ended quite pleasant, and I have just removed the banners, etc. that do not pertain to my blog this morning. Just finished painting and am getting ready to go to bed. I will have time tomorrow to write. I am trying to get more info. from my mother as to what specific drugs they gave him for the chemo and afterwards, because he has slowly progressed worse...
I hope that you trust me on this because I could really use some help.
Thanks.
J. Bello
http://dedicatedtomydad.blogspot.com
Please write more here when you have a chance. We have several very kind people here who have been through this illness with a loved one, and freely offer help wherever they are able.
 Signature Best Regards,
Evelyn
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