I Need You

Do not ask me to remember,
Don’t try to make me understand,
Let me rest and know you’re with me,
Kiss my cheek and hold my hand.

I’m confused beyond your concept,
I am sad and sick and lost.
All I know is that I need you
To be with me at all cost.

Do not lose your patience with me,
Do not scold or curse or cry.
I can’t help the way I’m acting,
Can’t be different though I try.

Just remember that I need you,
That the best of me is gone,
Please don’t fail to stand beside me,
Love me ’til my life is done.

– Author Unknown


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  1. cap says:

    Thanks so much for your reply! I wasn’t able to catch up much…she was back in the hospital with the c-diff! I do not know why the Huperzine A would bother her at one time, and not the other…but July 4th, she was given the Huperzine A in the morning, and not the previous evenings…she all of a sudden had tummy problems for three hours! It was so strange! It lasted almost exactly three hours…I felt so bad for her….She did some unusual things for her also, ”calling” out to her Mother and Grandmother! Then it passed, and she seemed to almost be herself…

    She also didn’t seem tor remember what had happened (and she usually does remember things)…

    I did wonder if she had a UTI…some of her behavior seemed to be like that…Just a few ”off’ things..but we went around the facility and did things…

    The next morning, though, I don’t believe she got the Huperzine – but she was almost non-responsive and clearly ”not well.” The c-diff symptoms had returned…she was taken to the ER, where she had to be changed 4 times in about 5 hours…and it’s that nasty C-diff stuff that is so unforgettable….

    When I mentioned the Huperzine A (as in, being similar to Aricept), the doctor said, well, maybe it was the C-Diff and not the supplement. I said, exactly! Since she has returned from the hospital, she has gotten the Huperzine, and it has not bothered her. Interesting, huh.

    Within a few days of being in the hospital, she improved. They’re going to have to watch her, care for this, over the next couple of months at the care place.

    C-Diff is more horrible than I could have imagined. The symptoms began almost a month ago. She started antibiotics, two times stopped after the symptoms seemed to stop, two times returned…I’m not sure that this was the right way to go, but who knows…

    The doctor did right away start FloraStor, probiotic. When I read about this, I wish we had started it at least a month ago! That also might be helping her stomach now, where the Huperzine A is not bothering her.

    Her actions / behavior have also improved! She even reached for the remote yesterday! Something she hasn’t done in months (not that she really can use it…she held it upside down…but she knew what it was!)


  2. cap says:

    Mom is doing great…the Huperzine A no longer seems to be bothering her tummy…

    I would almost go along with the idea that perhaps a medication earlier in the day was affecting the afternoon/ evening dose…except for that last day, the day before she went to the hospital. She had the Huperzine A in the morning, then followed by the ”usual” three hours of stomach upset. Don’t know how it all works…but now that the C-diff seems to be clearing, she’s much much better.

    1. AlzCarer says:

      I’m so glad she’s feeling better. That C-diff is indeed very nasty stuff, and very hard to knock down.

  3. KML says:

    Hi JAB:

    Just wanted to say hi and I hope you are your husband are doing well.

  4. cap says:

    C-diff is so much worse than you can imagine, if it’s not been experienced. The doctors say ” diarrhea.” Ha! Not even close. I don’t want to describe it, it could make me or the reader ill!

    She is doing really well. Not sure about the future with this, because it is hard to beat. Her GI doctor described it in a way, I wish I remembered his words. I have told doctors that it started about two weeks after she was in the hospital…maybe 10 days. I realized the other day, that no, it really started after she went off the antibiotics that she was put on in the hospital. So, they’re going to taper the antibiotics off, but she’ll be on them for some time, for sure.


  5. Linda says:

    Hi Jab- I have not been on Alzheimers infopop for a while, and when I checked in recently, was shocked and upset to see what has been going on. I have tried to figure out what happened, since I seem to have missed everything, and any trace of controversy seems to have been deleted, especially when I search for your name. I have contacted the Alzheimers society to question this, and and waiting for a response. Your comments were always amazingly beneficial, intelligent and helpful. I also worked in the healthcare field, and especially to those not in this field, your contributions were always so useful, and most important, caring. I had in fact written to the administrator previously regarding the deletions and editing of some members comments, since I felt they had no right to determine for me what I should or should not read. Then all this recent events happened, exactly what, I am unclear, but it seems to be something so drastic that it instigated your leaving. How horrible. They are defeating the whole purpose of why they are supposed to be there in the first place. The sight is just not the same- it seems cold and sterile and the intimate connections between members seems to have been lost. Please JAB or someone else, write to me and let me know what actually happened!?
    I would love to help in any way to make sure your knowledge and generosity which has been so helpful to so many people continues. Thank, Linda

    1. AlzCarer says:

      Hi, Linda. I’ve removed your email addy from your comment … some people have been using such information inappropriately. The reason I left (with the active encouragement of Admin):

      The new policy seems to apply to me and me only — they have been allowing everyone else to post hyperlinks to sites with pay-per-click advertising … they even do it themselves. C’est la vie.

      But … if you need me, I’m here. ((((hugs))))

  6. Judith says:

    Hi Linda,
    I do not know when you left off but I would be willing to bring you up to date.
    Drop me an email.

  7. hoda says:


    perhaps why also wine might not be so good for you?

    1. AlzCarer says:

      That’s a very interesting suggestion. However … so far, I believe there is not nearly enough data to support that particular connection.

      For one thing, moderate consumption of alcohol in general, and wine in particular, have repeatedly been shown to confer many health benefits, including several studies that concluded moderate alcohol consumption delays the onset and the progression of both mild cognitive impairment (MCI) and Alzheimer’s. See, e.g.:

      In fact, that’s one reason scientists started looking at wine constituents, such as resveratrol, to see if they would be beneficial for treating Alzheimer’s.

      Also … the studies discussed in the news article you found were done in solution and cell culture.

      All sorts of things can happen in solution and/or in cell culture that do not happen in a living organism. For one thing, the concentrations that are used in such studies are often many orders of magnitude higher than would actually be achieved in similar tissues by an organism ingesting or inhaling the compound under typical conditions.

      Diacetyl achieved notoriety several years ago due to concerns that workers in microwave popcorn plants might be at risk for developing lung disease from inhaling high levels of the diacetyl, and worries that consumers might be similarly at risk. The subject is, to my knowledge, still somewhat controversial, with a direct causal relationship yet to be demonstrated.

      Moreover, there is a difference between inhaling high levels of vapors and/or particulates, and ingesting products that contain low levels the compound. In fact, the FDA still classifies diacetyl and its substitutes as “generally recognized as safe (GRAS)” for use in products intended for human consumption.

    1. AlzCarer says:

      Hi, nightwill.

      I think …

      - It is likely that prevention will be easier than treatment.

      - It is likely that the earlier Alzheimer’s is caught, the better it will respond to treatment — but that response may simply be to slow the progression / help stabilize the patient, as opposed to actually reversing the disease.

      - We don’t know nearly enough about the Alzheimer’s pathology cascade to predict yet which part of that cascade will be the key to treatment — or, indeed, whether any single treatment will be beneficial for all, or even most, patients.

      Alzheimer’s is an exceptionally complicated disorder. It’s entirely possible it is a family of disorders … and if so, I doubt that one size fits all. Examples: Many researchers are now of the opinion that there are two major subtypes of Alzheimer’s, one with and one without Lewy bodies. Some of the more recent papers I’ve seen conclude that about 50% of Alzheimer’s patients fall into each category. A relatively high percentage of patients — possibly in both subtypes — may also have some form of vascular dementia added to the mix.

      - There is some reason to hope that antibody-based treatments will be broadly beneficial.

      For example, the results from the Gammagard (IVIg) Phase II clinical trial were very promising.

      However, bapineuzumab is a monoclonal antibody, i.e., it targets a single type of epitope. Gammagard is a very complex polyclonal mixture of antibodies targeting many different epitopes. We can’t be sure that the antibodies responsible for Gammagard’s success — if it’s real — bind the same biomolecules that bapineuzumab binds. I don’t know enough about Gammagard to know if it’s also a mixture of different immunoglobulin isotypes. If so, efficacy may depend on an isotype not found in bapi. (I say “if it’s real” because a Phase II study can produce highly promising results which are not confirmed by later Phase III studies … as those of us who were in the Dimebon trials are only too painfully aware.)

      - “Some patients on the drug had stable levels of brain plaque and less evidence of nerve damage compared to others who were given a dummy treatment, researchers reported Tuesday.” Without access to the data that inspired this comment, it makes me a bit queasy. It seems to me that there will always be a subset of patients in the treated cohort that progress more slowly than the average patient in the placebo cohort. Some individual patients respond much better — initially — to current Alzheimer’s treatments than the “average” patient. That does not mean that those patients have a better prognosis, however. I’d be a lot more excited if the article had explained how the comparison was done, and there is a reasonable basis for the comparison; e.g., if the analysis compared all patients in the treated and placebo cohorts who carry a particular gene or mutation, such as the APOE4 allele. (I’m pretty sure that was not the basis, since at least one of the Phase III trials was limited solely to patients who do not carry that allele, and its results were no better than trials that allowed patients to carry any APOE4 profile.)

      If the analysis was done on a purely mathematical basis … eh. Grasping at straws. There’s no way to control for a gazillion other factors that might have affected outcome. The patients who remained more stable might, for example, have been given nutritional supplements that are helpful, or been on a healthier diet (e.g., Mediterranean). And every additional factor that affected the outcome throws additional variability into the data analysis.

      - The article quotes “an expert” as having said ” ‘We’ve got a path forward’ now to test it in people with mild mental impairment.” It does not say that anyone is about to pony up the money to do so. And, given that there are other monoclonal antibody drugs in the pipeline that are apparently producing more promising results than bapi and/or apparently have a better safety profile (e.g., solanezumab and crenezumab) … well, I wouldn’t expect Pfizer and J&J to pour good money after bad.

      - Last, but not least … being able to treat Alzheimer’s much earlier in the course of the disease depends on being able to diagnose it much earlier. And that is a very thorny problem, in and of itself.

      Your thoughts? Anyone else’s?

  8. hoda says:

    There’s always a problem between accurate reporting by journalists who often do not excel in science, and scientists who really can’t – because it’s not possible – get everything down so the ”average” or even ”above average” person can understand all. What say you?

    1. AlzCarer says:

      Mostly I’d agree with you, with a couple of caveats.

      I think a truly good scientist is capable of explaining complicated concepts so that they can be understood by the layman who really wants to understand. However, most laymen are too impatient, or they don’t want to face reality, especially when it comes to something like Alzheimer’s. They want to be told it’s easily diagnosed, they want to be told there is a miracle cure, and they don’t take kindly to being told otherwise.

      Many journalists are capable of reporting accurately … given the time and incentive. Deadlines often make them rush to press before they’ve fully grasped the issues.

      Much more importantly: there is little incentive for the average news reporter to be accurate and objective. Many (most?) reporters want to produce shocking soundbites that will grab attention and create buzz and controversy … they’re not interested in producing solid and objective articles. (And that’s true in many areas of reporting, not just in the healthcare field.)

    2. Brijesh says:

      There is a nice paper (Soscia et al, 2010 PloS ONE) showing that aiolymd-beta has similarities with antimicrobial peptides family, and also, it has antimicrobial proprieties. Could be aiolymd-beta a friend of innate imune response which is helping to eliminate some unknown infection in AD brain? I think this paradigm shifting really interesting, lets see what happens Bye from Portugal.

  9. hoda says:

    I think there will be more guidelines on how some professionals and careers can pick out people with developing dementia at a better rate than even some neuros. Also, who is really prepared to see a neuro when some symptoms don’t seem neuro related to family and friends.

    Make sense? Here are some typcal things in life that might reveal early dementia – a dentist. Is patient really taking good care of teeth? or ”forgetting.”

    A refresher course in driving. Eye doctor. Hearing.

    1. AlzCarer says:


      Not so sure about the likelihood that more guidelines will be developed — although they probably should be — but I do think that caregivers who have been in the trenches for a while may be better at detecting dementia than some professionals … especially since many professionals don’t know very much about dementia and don’t want to.

      Recent studies have concluded that visuospatial problems often develop before short-term memory loss is noticeable. Those of us who have lived with a loved one while Alzheimer’s was developing could have told the researchers that, long ago. I don’t know how likely an eye doctor would be to pick up on issues like that, though, unless s/he was educated on the symptoms and encouraged to include testing for them in routine vision exams. Guidelines for that might not be all that difficult to develop.

      Such problems definitely can affect driving, but in my experience, they show up too sporadically to be readily picked up in a driving test. Plus … the overlap between an otherwise competent driver who is developing visual agnosia that interferes with his driving, versus your basically incompetent driver, is perhaps too great. I would think one would have to know the specific individual’s “baseline” driving skills in order to determine if they’re changing.

      I would offer another early-stage symptom to be on the lookout for: difficulty handling finances. Many of us found out the hard way that that is another early-stage symptom that can have devastating results. Guidelines for that might have to be directed primarily at caregivers, though … what sorts of healthcare providers would be in a position to detect such problems? Unless, of course, simple tests were part of a screening exam that would be administered on a routine basis.

      What did you have in mind for hearing?

      1. Petra says:

        Thank you for watching and cmnoentimg. We are getting ready to go the International Congress on AD in a few weeks where we will present data on a group of subjects known as the oldest old’ who harbor amyloid pathology but never became demented despite living to advanced ages. We hope that their biochemistry might shed light on how things can go wrong in AD.

  10. cap says:


    pacemaker for brain? sounds – weird?

    1. AlzCarer says:

      It’s not a pacemaker per se … it’s “deep brain stimulation (DBS)”, which has been under study in other countries, especially Canada, for a host of different conditions including depression, obsessive-compulsive disorder, chronic pain, and Parkinson’s disease and other movement disorders. It was originally developed in France, and first approved by the U.S. FDA as a treatment for tremor in 1997.

      We talked about its potential use for treating Alzheimer’s patients on the Alz Assoc forum in 2008, when Lozano’s paper came out.

      DBS involves an invasive procedure in which electrodes are implanted in the brain under local anaesthesia while the patient is awake. They are controlled by pacemakers stitched into the patient’s chest.

      By the time the 2008 study was reported, DBS was so successful in treating motor problems associated with Parkinson’s disease that more than 40,000 Parkinson’s patients worldwide already relied on it.

      However, one has to know which areas of the brain might be involved in a particular disorder to try electro-stimulation. For Parkinson’s disease, the electrodes are placed in the subthalamic nucleus; for depression, in area 25 of the cingulate cortex.

      What was surprising about the 2008 study’s attempt to treat morbid obesity is that the region of the brain that was stimulated (the hypothalmus) controls appetite. It is not considered a seat of memory, yet the authors claimed that stimulation there had a striking effect on the man’s memory.

      It must be remembered that the vast majority of the DBS studies, including those related to the treatment of dementia, have been extremely small, and therefore extremely susceptible to the data being skewed. The results may be highly misleading, even if presented fairly and objectively by the authors. And … even when the researchers present their work clearly and carefully, the news media has no such compunctions.

      Perhaps much more importantly, we still have very little idea what sorts of unexpected results DBS may have when the electrodes are implanted in different regions and/or used in different ways, and/or used on a long-term basis.

      In the US, the FDA granted a so-called humanitarian device exemption to allow patients access to this intervention, thereby removing the requirement for a clinical trial of the appropriate size and statistical power. Bypassing the rigors of such trials puts patients at risk, limits opportunities for scientific discovery (pro and con), and gives device manufacturers unique marketing opportunities.

      Keep in mind when reading papers published by Lozano’s group — and news articles hyping them — that he has formed a company for commercializing the technology. He is, naturally, enthusiastic, and I’m sure that comes across when he’s talking to reporters. This technology, however, is still very much in its infancy, and much remains to be learned about it.

      The “selective reporting” of the rapidly-increasing number of very small, inadequately-designed, very preliminary studies on the potential use of DBS for many different conditions in diverse patient populations have caused a storm of controversy over the ethics of conducting these studies. See, e.g.:

      Deep Brain Stimulation in the Media: Over-Optimistic Portrayals Call for a New Strategy Involving Journalists and Scientists in Ethical Debates

      Ethical Issues in Deep Brain Stimulation

      Balancing the Brain: Resting State Networks and Deep Brain Stimulation

      Separating Hope from Hype: Some Ethical Implications of the Development of Deep Brain Stimulation in Psychiatric Research and Treatment

      Misuse of the FDA’s humanitarian device exemption in deep brain stimulation for obsessive-compulsive disorder

      Ethical guidance for the management of conflicts of interest for researchers, engineers and clinicians engaged in the development of therapeutic deep brain stimulation

      Proposals to trial deep brain stimulation to treat addiction are premature

      Ethical Issues Raised by Proposals to Treat Addiction Using Deep Brain Stimulation

      Is deep brain stimulation a prospective “cure” for addiction?

  11. Barbara says:

    Found this very touching and something we just need to b reminded of on a regular basis when dealing with our loved ones

  12. Arlene Harvey says:

    My husband with 7 yr dementia is constantly combing & scratching his head & going bald. He won’t wear a cap. No real scalp problems or dandruff. What can I do? Thanks

    1. AlzCarer says:

      Arlene, I do apologize for taking so long to respond. I was updating a literature search on Alzheimer’s drugs for another reader, and it took quite a bit of time.

      I think the first thing to do is check the side effects of any medicines (OTC as well as prescription) and supplements he’s taking. Many of the drugs prescribed for dementia patients – for behavioral problems, sleep aids, slowing down memory loss, and depression – can cause severe itching.  So can other drugs commonly prescribed for older people, for blood pressure, prostate issues and many others.  This side effect may be listed either as itching or urticaria. You may find it listed under “Integumentary System.”  One of the best sites for researching side effects of prescription drugs is http://www.RxList.com. For OTC medicines and natural supplements, try http://www.drugs.com. If you identify a medicine that can cause this side effect, talk to the doctor about the possibility of discontinuing it for a while, to see if it’s the culprit, and/or switching to a different drug.

      The problem could be dehydration, so be sure your husband drinks plenty of fluids, preferably 2 liters of water a day. (This is also good for preventing constipation.)

      Since older patients often have very fragile skin, frequent bathing may not be advisable.  Shower warm water rather than hot, and only twice a week.  If that doesn’t help, try using a no-rinse product.

      If he has significant hair loss, try using a non-allergenic lotion to keep his scalp moisturized. Ask the doctor if s/he would advise a prescription Kenalog/Lubriderm lotion.

      Also ask if it would be okay to use tylenol, which can reduce the sensation of itching.

      Check out the suggestions in the Constant Scratching / Picking at the Skin article for ways to keep your husband’s hands occupied.

      If it is really a serious problem — if he’s scratching himself bloody and the wounds are getting infected, for example, or he seems miserable, one reader posted that his father’s doctor prescribed gabapentin, which stopped the scratching in its tracks. Pregabalin is another neurotropic drug that is prescribed for neuropathic itch and psychogenic itch. The doctor would need to check for compatibility with medications your father is already taking, and you’d want to consider the potential for adverse side effects, of course.

      The hair loss may or may not be related to the combing and scratching. It may be due to poor nutrition (which may, in turn, be caused by the dementia), especially lack of protein or iron. It could also be caused by hypothyroidism. Or … it could simply be age-related, especially if the men in his family tend to have thinning hair as they get older. If he hasn’t had a checkup recently, you may want to discuss this with his doctor, and possibly consult a dermatologist.

  13. Jo C. says:

    JAB: HELLO!! What a joy to find you and this amazing place! I am still serving as a Peer Volunteer at the Alz. Assn. and I found this site by info given by a Member of the Message Board.

    I am SO, SO, happy to “see” you. I have thought of you so very often and you are greatly missed.

    You have been thought of often and I often wondered how you were faring and what was going on in your life.

    NOTE: This marvelous place you have created is truly a marvel and like a welcoming oasis in a vast desert; I have seen nothing to compare and I am sure you have helped and are helping a huge number of people. Frankly, I wonder if there isn’t a best selling book in here somewhere.

    Happy to know that you are continuing to be what you alway have been; a thoughtful, brilliant, insightful and caring person who reaches out to share her wealth off knowledge and help others in so many ways.

    Truly; those of us who knew you way back when, really, really miss you.

    Big, soft hug coming you way along with warmest wishes for the best that can be.

    Jo C.

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