My mother has been living with us for the past 4 months, as her Alzheimer's Disease and dementia has gotten worse, and it is not safe for her to live alone any longer. She is on Namenda and Exelon Patch. She has a continuing anxiety problem and we have tried various small doses of medication, Trazodone, Klonopin, and now her new geriatric psychiatrist wants to replace those with Mirtazapine.
Nothing seems to have any impact on her anxiety issues, and she talks almost non-stop. Has anyone else run into this when caring for a loved one with Alzheimer's Disease?
I am grateful for what we do have, her life, our moments of joy, and we make the best of things. I wish she didn't get so anxious over any little thing, and I try to calm and reassure her.
This week you made me some questions.
I will try to reply in the best way.
Q: Have you heard of anyone that was not helped?
R: For persons that are in the lasts , very last part of the stage seven of dementia, as a patient that is feeding by tubes a long time , do not moves any muscle anymore ,etc , I guess that the supplement will not helps.
But for patients in the last stage of dementia , but that was in feeding tube for a short period of time for recovery of some disease , the supplements still can works , as I saw sometimes , the suplements (under permission and supervisiono f the physician of the patient) helps to the patient in a short period of a feeding tube , to recovery the strengh and the ability to swallow again , and including the ability to talk some words or sentences again, and to keeps very calm, without delusions and agitation,etc.
.I saw that if the patient is in the MCI or even in the mild stages (as the first and second stages ) of AD and others dementias, if the patient takes all the supplements in the doses that I pasted before (under his physician permission and supervison) , the patient can have a so great enhancing , that he will looks almost as a “normal” person , and the better, the dementia looks to stops (in a empirical observation) in that stage for a lot of years, that means , if the patient have an MCI , the supplements can control the MCI symptons , and maybe , the patient can be protected against AD for a lot of years, obviously depending of the comorbidities that the patient have ,as diabetes , severe heart diseases, strokes, etc , that can hastens dementia, but even in that cases , the dementia looks to slows down (please , all it are based in empirical observation only).
Most people that are using the supplements in a empirical way (under the physician permission) are relatives of friends of mine that are physicians. As that friends of mine are physicians, it is easy for them to gives the supplements to their relatives with dementia , and is easy for them to use the NPI test with the caregivers, and others clinical tests to evaluate the improves of cognition , mood and behavior of their relatives with dementia.
And they started to gives the supplements after my anedoctal report to them about the enhancings with my aunt. They did not knows about the supplements effects to dementia patients. Some of that physicians ,
I gave the glucuronolactone, carnosine , acetyl L carnitine to they starts to test in their relatives with dementia (now they import tôo the glucuronolactone from USA). All that friends of mine that are physicians , that are giving the supplements to their relatives with different types of dementias (AD,frontotemporal dementia, vascular dementia as brain multinfarct, stroke sequelae dementia,etc), all are amazed with the enhancings.
But for patients with the 3,4,5, 6 and 7 stages of dementia , we and every person that knows the patient , can see an AMAZING enhancing in the quality of life, with a better comunication, a better attention to the caregiver and relatives, without or almost without delusions and hallucinations , without depression , without cryings alll the time, without yells, without agressiviness and agitation, without sundowning, without insomnia, sleeping all the night calmly, easy to cope during the day , taking baths without meaning (asking for baths!), talking better, with a better speech, with a great strehgh.
I saw a patient that could not change anymore her position in the bed , and was very difficult to seat her in the bed, and she did not have no interaction with the caregivers or relatives , and after two months using the supplements (only under the physician permission and supervision), she changes her positiion in the bed, she sits sometimes without no help, she grasps the cups and glasses again and drink fluids alone without help, she remember her relatives again , she pays a extreme attention to the persons and what happens in the room (and calmly , smiling – she used to cry and to yells most the time that she was awake- now she talks friendly to all and she is happy!).
But each case is one case, then different persons have different types of dementias, different types of comorbidities,etc , and will have different levels of enhancings . But all. absolutely all have some or a lot of significative improves. PLEASE ,DO NOT GIVES NONE SUPPLEMENT OR MEDICINE DRUG WITHOUT THE PERMISSION AND SUPERVISION OF THE PHYSICIAN OF THE PATIENT. All this text is only an anedoctal report , without scientific foundation, based only in empirical observation.
Q: How long before you see some improvements?
R: With the GLUCURONOLACTONE (that is the number one supplement-without it nothing works!) , the effects starts between 30 minutes to 60 minutes after the patient takes the supplement (in fact in a carefuyl observation we see enhancings after 20 minutes).
We use tyhe GLUCURONOLACTONE to rescue from some delusion, agitation, hallucination,etc , and in 40 minutes the patient looks to be very calm and easy to cope.
The main is the glucuronolactone. It is like a movie: You can do a movie with only the leading or main actress . Maybe will be boring and will not sell so much , but you can do the movie. But you can not do a movie only with support actor talking alone , without the main actor to interact with him. The movie would be a non sense movie and would not works, and no one would like to see it.
The same is with the glucuronolactone: it is the main and principal and what works in dementia.But the “support actors” ACETYL L CARNITINE , and in a minor amount the carnosine are very necessary and makes things more stable and have na amazing and fantastic synergistic effect with glucuronolactone: Acetyl L carnitine stabilizing the effects of glucuronolactone, and giving great enhancings in attention, speech ,strengh,comunication, interest,etc.Carnosine helps the calminess .
Q: My issues are to see improvement from hallucinations and delusions.
R: For sure you will see enhancings in the control of behavior disorders as delusions and hallucinations. But we have to takes some measures about the foods: Less fat it is like more enhancing with glucuronolactone . I will gives more details in another post.
Q: How long has your Aunt been on the supplements and do you have to increase the supplement doseage as time goes on?
R:She is in the supplements since january 2009 , but in the pure glucuronolactone powder since january 2011.
She is with the “support actors” acetyl L carnitine and carnosine since 2013, once I did not knew until 2013 , that it support actors could gaves a big boost in the enhancings of cognition , mood and behavior. If I knew that since 2009 , she was taking it since that time , and I’m sure , she would be much , but a lot much better than know , but...I say to the friends of mine that are medicine doctors : starts SOON all the supplements , titrating slowly , and doing as you will do: titrate first the GLUCURONOLACTONE by 15 days , then the ACETYL L carnitine (please: it is acetyl L carnitine , and it is NOT L carnitine- L carnitine will NOT works) , and after more 15 days starts the carnosine.But the last dose of Acetyl L Carnitine it is up to 5:00 pm to 6:00 pm. Please do NOT gives NONE supplement without the permissio n and supervisiono f the PHYSICIAN of the patient.
Q: I will start slow with the gluconolactone first.
R: Yes , do it , under the physician permission and supervision only , AND TWICE A DAY (FOR EXAMPLE AT 9:00 am and at 4:00 pm.I hope that it works You can send me any time any question by this site or by email.
Snce 2011 I use to purchase the pure glucuronolactone just in USA.
You can purchase the pure glucuronolactone , the carnosine and the acetyl L carnitine in the same site in USA.
But I purchase only the pure glucuronolactone in the site below.
About the carnosine and the acetyl L carnitine , I asks to a compounding pharmacy in my city to puts the carnosine in the capsules with the exact doses (80 miligrams by capsule to takes each 12 to each 8 hours) and to put the acetyl L carnitine in the right doses in the capsules too ( 100 miligrams three times a day, starting with 50mg titrating to 100mg) , and the caregiver open the capsules in some juice and gives to my aunt.
But anyone can buy the pure carnosine and the pure acetyl L carnitine and the spoons, and put the powders in juice and gives to the patient .
The site that I purchase the glucuronolactone and that you can purchase too the acetyl L carnitine is the site called Pure Bulk , and I observed giving the glucuronolactone to my aunt , that their glucuronolactone is really concentrated and pure , as the glucuronolactone that have a high efficacy to my aunt.I use to buy in that site since 2011.But there ard a lot of sites in USA , that you can purchase thd pure glucuronolactone, etc. Searching in google you can find others good sites.
For glucuronolactone I purchase in:
purebulk/glucuronolactone-powder.html#.UtffDxVTtR4
Searching in that siite Pure Bulk and in others sites of supplements , you can find the pure and concentrated carnosine and the pure and concentrated acetyl L carnitine.
As I told you before, I use the carnosine and acetyl L carnitine of the compounding pharmacy of my city and not from Pure Bulk.
I purchased special spoons , that are made for the supplements, and are very small , and we use to measure powders of that supplements..
I purchased it in the site of Pure Bulk . They have the very small special spoons.
For the glucuronolactone the better is one measure of the SMIDGEN spoon 3 to 4 times a day , and an additional measure in case of agitation, etc.
For carnosine we can use ONE measure of the DROP spoon three times a day.
For the acetyl L carnitine we can use TWO measures of the DROP spoon.
For the spoons :
purebulk/5pc-spice-measuring-set.html#.UtfgShVTvWc
Must be easier to get the pure product as a single ingredient in Brazil. Not so simple here yet.
That may change with the literature suggesting cognitive improvement, and if supplied catches up with demand.
Best re
Thank you for your kind praise of my abilities.
Carol
Thank for your reply.
But I have to insists : as your mothers have that severe heart diseases and as she takes lots of medicine drugs for heart , blood pressure and antipsychotic drugs , I guess that you could talk to her doctor before to gives any food supplement.
Patients with severe cardiovascular diseases are very frail by it heart diseases and if the patient have some complication caused by it own heart disease (and not by the supplement) or by the use of antipsychotic , it is common to think that the supplements are the culprit, while the actual culprits use to be the severe heart comorbidities by itself , or the strong drugs as antipsychotics that the patient takes. Then is a decision that the physician have to takes.
I guess so that you or the physician of your mother, maybe could use the NPI test before to use the supplements and each 20 to 30 days after starts to gives the food supplements (under the physician permission) , once it is a very easy test , easy to understand and easy to apply to the caregiver (not to the patient) , and with the NPI test (Neuropsychiatric inventorty test for mood and behaviors disorders of dementia patients) the doctor and the caregiver can pay attention to small enhancings and to different levels of enhancings in mood and behavior, and you will be more sure about the enhancings.
About the supplements , I do not knows where you can find a compounding pharmacy where you leave , but maybe , searching in the Google you can find a compounding pharmacy in your city or state(?).
About tto open a capsule of 500 miligrams and to split into 4 equal parts I guess that it is a good idea , once as glucuronolactone is a food supplement , you do NOT needs to get the exact dose of 125 miligrams to each of the four parts of the capsule of 500 miligrams.
I guess that it will works (three to four times a day one part of the capsule – only under the physician permission) .
As I wrote before , it is interesting to lowers the ingestion of fats , oils once you will see better effects with glucuronolactone.
The first thing that we can see it is a more calm patient, that pays more attention to what the caregiver says, easier to cope , more relaxed,etc. And you will observe others small enhancings in mood and behavior since the first day of use of the supplement.
Please , take a look in the site searching in google with the words : NPI test Neuropsychiatric Inventory (NPI) Setting the Standard for Alzheimer Research
Complementing:
You asked about friends of mine that are giving the food supplements in that small doses to their relatives with dementia (under theirs physicians permission).
I can report you that they are seeing the same amazing results to control behavior and mood disorders and to enhances cognition.
Their doctors , as with my aunt, are using empirically the NPI test to measure more precisely the enhancings in mood and behavior.
As me and that friends of mine use to say : it is like you "get back" again , most of the mind of our relatives with dementia , not in a so stable way, but in a very fast way , and it gives relief and even happiness to the patients,caregivers and relatives.
The caregiver wets her fingertip with that specific " babies bedtime shampoo" and passes the fingertip on the edges of the pillowcase ".
Well is only na anedoctal report of that friend of mine , but she says that the lavender in that baby shampoo, as with babies , it is working to gives a better calmness to her mother with advanced dementia ...
" ...We get the small doses asking for the compouding pharmacists (in coumponding pharmacy), to put the powder in capsules in that small doses.
Then caregiver open the capsules , and put the exact small doses in , for example, 50 mililiters of milk or juice, and gives it to my aunt.
They put together in the milk or the juice the respective doses of each supplements.
But all under the physicians permission and supervision.
I suggest you that you check and register three times a day , the blood pressure and heart rate of your mother, during tem days , before to gives any supplement , to have a parameter before she takes the supplement.
It is interesting that you send to the doctor the blood pressure numbers and heart rate registered during that tem days before to starts the supplements.
But , for example , some supplements , as they are antioxidants they can Interact with aspirin (A.S.A.) , giving a synergistic effect. Then patients that use aspirin (acetylsalicylic acyd) , the doctor have to titrate to a smaller dose of ASA.
We started with one supplement each 15 days , starting with the Glucuronolactone in the small doses 2 times a day.and then we add, the others supplements each 15 days (acetyl L carnitine, then carnosine,etc.).
We check the blood pressure and heart rate and register it three times a day.
As these supplements really control anxiety , they can give a lower blood pressure , and we had to make a down titraiting oof the doses of blood pressure drugs . then to check blood pressure and to have a absolute control buy the physician ois very necessary.
In fact , most people that use that supplements have to lowers the doses of blood pressure drugs and of antipsychotic drugs , according the physician advices only. We observed a great enhancing in the quality of life of both: the patient with dementia and the caregiver (it lowers the stress of the caregiver if the patient is easy to cope).
The glucuronolactone gives the best and more significative results to control mood and behavior disorders (as hallucinations, delusions, agitation,enhance mood , cognition ,etc). But the others supplements , mainly acetyl L carnitine have great effects to enance attention, speech and the mood. But alone , acetyl L carnitine do not have notable effects in behavior and mood .
We observed that the best is to gives a low fat diet , because fats can impairs the good effects of glucuronolactone.You can observe it that after a fat meal (cheese, butter,oils,etc) , we see an impairing of the good effects of glucuronolactone until the next dose.
But glucuronolactone works really as a “rescue” supplement from the delusions and hallucinations, and to enhance mood (makes the patient be calm and smiles again) , only 40 minutes after the patient takes the dose of glucuronolactone. It is amazing to see how calm and how easy to cope they be after the 40min to 50 min of a dose of glucuronolactone.(it is really very fast to see the amazing control of the “odd” behaviors).
Carnosine gives some relax to the patient ,but only when used with glucuronolactone. After the carnosine we can see a “relaxed face”.(carnosine is a dipeptide,that was first extracted from the extract of chicken chest) .
We get the small doses asking for the compouding pharmacists (in coumponding pharmacy), top ut the powder in capsules in that small doses.
Thank you for your reply and for your very interesting questins. I will try to reply each of yours questions.
Q: You wrote : “I am open to any supplements, but want to make sure that they are safe. Her doctor like most mainstream doctors don't know enough about supplements to give an okay to use them...”
R: Please , do NOT gives NONE supplement without the authorization or permission and supervisiono f the physician of your mother . The physician of the patient is the only person with enough medical knowledge to authorize it , and if he do not gives permission, do NOT gives the supplements ...
Q : Is there any side effects with these supplements?
R: There are some mild side effects but can be minimized in the very low doses as I pasted . It is easy fo her physician or for any person , to find information about the supplements.
Then , any doctor , if they have a real interest , they can in a very easy way to read about the supplements and it mild side effects ,and to authorize or not authorize the use , and they can titrate the doses specificallly to each patient. The supplement glucosamine sulfate (extracted but extremely purified from the shell of crustaceans) can NOT be used by persons with a NON controlled diabetes or that have allergy of crustaceans.
Q : You wrote that your “ mom has a low heart rate... “ and that “ ... she takes a low does blood pressure med and a drug to keep from having palpatations...” and that “ ... she also takes zyprexa...’
R : A patient that have severe cardiovascular disorders as your mother has, and that takes Zyprexa , that is an antipsychotic drug that can gives severe cardiovascular side effects too , you will never knows if she have any cardiovascular complications , if it was caused by her heart and blood pressure disease, or by the Zyprexa or by any supplement. Then once more , ONLY her physician can gives authorization and can titrate the doses of the supplements.
Q: “ My mom is one who can not take even small amounts of coconut oil orally, because of the diarrhea...”
R: My aunt has diarrhea too, and we do NOT gives the coconut oil by mouth , but the caregiver uses to do massages with a tea spoon of extra virgin coconut oil , that scientific articles in Pubmed shows, that extra virgin coconut oil it is absorbable by the skin.But we use the extra virgin coconut oil in massages , ONLY under her physician permission, I suggest you to do the same: to use any supplement or medicine drug under her physician permission.
But as I read that you like aromatherapy too , I will tell you more one anedoctal report.
The mother of a friend of mine have advanced dementia , and the caregiver it is using a shampoo for babies that claims that is a “shampooing bedtime” shampoo.The interesting is that the famous pharmaceuticcal company that makes products for babies, it is using the lavender in it “bedtime” shampoo , that works as aromatherapy giving calmness after shampooing the hair with that specific so called “bedtime” shampoo. As shampoos for babies are safe , maybe is worth to try to use that specific “bedtime” shampoo for babies (made by that famous pharma company) to wash (shampooing) the hair of dementia patients too.
But if you read the others comments that I made before about these supplements , I always write that :
a)ONLY the physician of the patient knows the right doses , the right intervals between the doses ,and can gives or NOT permission to gives it to the patient.
b)For the the responsability administration of the supplements to any patient and for the ingestion of any supplement is in the hands of who does it. Please , do NOT gives NONE supplement withou the permission of the physician of the patient.
Thank you very much for your interest and questions.
Talk t the physician of your mother and asks him to read about the supplements. It is easy for him. It is a question of will.But any way , follow only the doctor advices.
Best regards
Carlos
First of all, you have described quite a drug cocktail for your mother. Be aware that some doctors, in an attempt to help, give them such a combination of medications that hyperactivity is one of the results.
Next, there's nothing to say that a mental condition does an overlay dementia. My STRONG sense is that your mom is in a manic phase of bipolar. That could be an existing or new psychological problem and/or it could also be related to over medication.
As a professional nutritionist, I can tell you how little doctors know about what foods and supplements can do to help. Having taken care of too many dementia patients, I can also tell you that I know how difficult it is to get them to take certain things for to get a doctors cooperation in trying those things.
I'd like to refer you to a member here named Carlos who has posted at #19 & #21 on this thread. You will notice that he recommends everything in consultation with the doctors. But he has done extensive research because of his aunt with dementia. And he is far too modest. He is a dentist in Brazil and is quite the nutritional scientist in my opinion. It certainly won't hurt to take a look at his of rings.
In spite of the many nutritional approaches I have taken, in every case there has ultimately been medicating required. The key is: which medication? Some combinations are just outright overkill - like the old expression of killing a fly with a cannon.
Finding the right medication is trial and error. Every patient's brain is different from every other's AND a particular patient's brain is dynamic and will change intermittently from our to date a week to month. So even if you find the right medication today, it may not be the best medication in a month, and you need to be prepared for that. What will get you most stuck is the thought that you "don't know why xxx Rx isn't working anymore". You must be open and willing to change up the medication as needed. The best thing to do is keep in current contact with the doctor by email. That way, you're on going concern should get into your loved one's file. You have to be the advocate for your loved one not to wait till the next appointment to make a switch.
Taking care of a dementia patient can turn you into a bipolar (haha). One moment you have joy because you're able to care for them and the next moment you have anguish seeing how they've become.
I got some breathing exercises from a chiropractor that helped the situation, plus I watched some videos and did some reading on the subject of anxiety, so now have a better measure of recognition and control of the issue. I have a bedridden husband that has makings and issues with dementia, but I do not let him have drugs for it, and he is not anxious, for that is not his personality. He was always laid back, with attitude, "if you can do something about something, do it! If not don't worry about it. " Unless you can smooth things out for her by removing the possible aggravation of drugs, maybe my husband's old time solution will work for you. " Just enjoy the sound of her voice, be glad you can give her support through her anxious moments, and "don't worry about it." What do you think? Take care, and here is a hug for you. joylee
The (NPI) test is one of the most reliables neuropsychiatric test for patient AD in any stages of Alzheimer disease dementia type , and can be used with others dementia types, once it is specific to mood and behavior disorders, while the so called Minicog or Minimental test is specific for test the cognition in the firsts stages of AD dementia type and others dementias types.In an empirical way , me and friends of mine are using the NPI-Q TEST, as one of the parameters to comprove the effectiviness of the food supplements that I pasted in the comments in this post.
Using the NPI test (that can be applyed and analysed by the physician of the patient) , still in an empirical way , it is very intersting once we can really mensure the improves in mood and behavior of our relatives with dementia that are taking that food supplements. We makes the tests before to starts the supplements and each month and it comproves great enhancings in cognition, mood and behavior.
To find the NPI scale , we have only to search in google pasting the words : Neuropsychiatric Inventory Neurotherapeutics and Drug Development in the Neurological Institute
We are using in an absolute empirical way ,and this is only an anedoctal report.
In an empirical way we are giving:
1) L-CARNOSINE : 60 miligrams three times a day.( it is CARNOSINE and it is NOT L-carnitine).(only these small doses).
2) L-GLUCURONOLACTONE : 300 miligrams 2 to 4 times a day.
3) GLUCOSAMINE SULPHATE : 200 miligrams 3 to 4 times a day. I know GLUCOSAMINE it is a supplement for joints. But when she started to use GLUCOSAMINE for her joints we saw an amazing calmness and control of agressiviness and agitation.
We can find in the medical site PubMed SCIENTIFIC ARTICLES that shows that glucosamine stabilizes tau in the microtubules in the neurons, and works as an alternative fuel to the neurons too .
4) ACETYL L CARNITINE (ALCAR) - 30 to 60 miligrams three times a day.(it is NOT l-carnitine , but is ACETYL L-CARNITINE)( only these small doses).
5) EXTRA VIRGIN COCONUT OIL - One tea spoon by mouth three times a day
But if the patient have diarrhea even with these small doses , the caregivers makes massages with the oil in the thin skin of the arms with the tea spoon of the oil ,once the coconut oil has a comproved fast trans cutaneous absortion (according articles in PubMed)
A lot of friends of mine , after my report , are giving to their relatives with different types of dementia ,with the same amazing effects to enhances cognition,mood and to control the odd behaviors.But this is only an anedoctal report , without none scientific foundation, based in empiric observation only.O
Only the doctor of the patient can gives permissions, and knows the right supplements and the right doses of each supplement.
Talk to the doctor of the patient before gives any supplement or medicine drug.
My mom is starting to talk to herself now as well and is imagining other people here. I now am giving her homeopathic anti anxiety lozenges that I can safely give her several times a day. They seem to work well for her and then in the evening a about a half hour before she usually goes to bed I give her a sleep aid that is working well. It has melatonin in it and some Valerian leaf. She gets up to go to the bath in the middle of the night. She is not drugged out at all and wakes up refreshed. Mind you she can't remember anything you talk about or person she sees or anything that she does do past a couple minutes. What I do know that she can remember and will carry with her all day is any emotional feelings of any situation. I made the mistake of telling her that her husband had died years ago when she insisted he was here, then she changed it to she knew she had a man friend here and she wanted to know3 where he was. She went through the house opening doors looking for him. I tried to turn it into humor and said she must be hiding him in her closet somewhere because I hadn't seen him around. It made her mad and she walked up to my hubby and in a very agitated voice. said " What the he.. is going on around here" He calming told her that it was just he and I and her living here and she looked at him like she though he was lying as well, but she won't try to argue much with him. She had been at her adult day center for 4 hours and so coming back home to her home here with us does usually cause her some anxiety. I gave her a couple of the anti-anxiety lozenges and she was fine in about 15 minutes.
It is hard to walk on egg shells around her for sure, agree with her assumptions of things that are pretty crazy. I am trying to learn, not to correct, but to accept the person she is now. So far we are surviving it all. I do know that as confused as she is here, I know she would be so scared and angry in a strange place away from family and her things. Here she does get to see me. her only daughter my
wonderful sweet and patient hubby, and lots of grandchildren and great grandchildren that live near and are always stopping in. Yes I do have a brother and she has one too still living but, my brother never offers to see her or call her or anything. Her brother has come to visit about 3 times this past year. I used to take her to their homes but she is ready to leave in about 5 minutes and go home so that won't work either. Good luck everyone.