This question is only for people who have NEVER used pharmaceuticals to treat their spouse’s Alzheimer’s Disease (Aricept, Exelon, Razadyne, Namenda)? I know there are strong advocates FOR medication, I know there are many who have eventually WITHDRAWN medication – and I have read all those posts. I would love to hear from people who NEVER used the pharmaceuticals at all.
(I readily admit I have a strong anti-pharmaceutical bias.)
Based strictly on my unprofessional observations (based on videos and reading from caregivers and patients alike), and on my gut instincts, it seems to me that: 1) these meds cause as much harm as they do benefit, in particular – anxiety, sleeplessness, hallucinations, paranoia, etc. 2) once you start them, there is a strong reluctance by physicians to discontinue them – the fear that patient will “fall off the cliff” 3) their use leads to a spiral of pharmaceutical management of symptoms – you later introduce RXs for the sleeplessness, for anxiety, for aggression, for hallucinations, etc, etc
Given the above, and that the medications only postpone (by months) the inevitable decline, I have not pushed the issue with DH (he was prescribed Excelon, but never took it). He was diagnosed with MCI 16 months ago (at age 59) and has refused follow up.
BUT… my DH is definitely getting worse. He is now working 60 hours a week and barely keeping his head above water. He doesn’t talk about his own cognitive impairments, but he must know he’s declining - he has many outbursts and melt downs, and expresses a great deal of frustration about work. I feel terrible watching it, and think it must just suck for him – although I think he does not connect the two – his cognitive impairment with the work frustrations. I just want so badly to help him.
I’ve begged him to retire and he won’t consider it – I think most of his self-identity is attached to his job. So, since he is determined to continue working, should I push him to go for the follow-up that was advised, so he can get on the medications? Or should I just let the disease take its natural course, which will mean a forced retirement, sooner rather than later?
If there weren’t these horrendous side effects, I would opt for trying the meds. But I sure don’t want things to get worse – aggression, anxiety, etc. It seems whenever I think I should get DH on the meds, somebody is posting here about bad side effects… I guess my main question is – if we skip the meds – could we still end up with the anxiety, sleeplessness, hallucinations, paranoia, etc.? Are those problems related to Alzheimer’s, or are those problems caused/worsened by the drugs used to treat Alzheimer’s?
Oh, boy, Mary, that's a loaded question! We don't fit the category of NOT giving the meds in the beginning, but I believe if I had to do it over, I would not give the meds in the beginning. If any bad behaviors, etc. reared it's ugly head, then I would certainly get something for that, but not necessarily for the AD. An excellent question for discussion!
I wish I had the right answer for you. My DH became more mellow and easier to deal with, once dx and Namenda was added. He was asked to retire from his job. I am not sure about the meds. DH did seem better at first when he was put on the Namenda. But then again he was no longer working and no longer had that stress. I wish I knew......
mary, you are very lucky indeed that your DH can not only work but put in 60 hrs./week. Don't assume he knows he's getting worse. Many of us on this board did not have the early diagnosis you and your DH had...my DH was well into stage 4 possible 5 before he was diagosed and by that time he could no longer work. He was initially put on Celexa to help with his aggression but nothing else, so it doesn't mean your DH needs pharmaceuticles unless he is displaying aggression or paranoia. I would definitely recommend that he has the follow-up appointment with his dr. You can always choose not to put him on meds. Unfortunately for us DH was physically aggressive which left us with no choice if I wanted to keep him home. I do not have a dementia spouse who is happy, calm and compliant. The only way to keep him home is the use of pharmaceuticles. I don't like it but I want him home and I know he would be on them if he was in a facility. Be thankful you have choices at this stage.
We have used them from Dx, so I can't answer the question as stated, but I do want to submit that using the "classic" AD regimen of Aricept and Namenda may precipitate no negative side effects at all. At least it hasn't in our case, as far as I can tell, in almost 5 years.
Nonetheless, I'm sympathetic and not crazy about Rxs in general. I'm sort of on the "afraid to quit" (even though I kind of want to) team.
My DH never took any meds and did not go for further testing after doctor dx him. He never had the aggression or anger that I have read about. He did have sundowning but only for a short time. His last six months was mostly about halucinations. My grown son lives with us and he helped with him when he was fearful of strange people in the house, when there was really noone else here. He never had problems with incontinence either way. He was dx in 2001 and passed in 2007. His memory loss was the main problems with him.
Mary: I know your questions is ONLY for those who have never used the Alz drugs. But, with all due respect, if one never used the drugs how would one know what the value of not using them are vs using them. Just like those of us who have used the drugs have no way of knowing what our spouses would be like if we hadn't used them? Since none of us can answer that question I will tell you why I choose to use them vs someone choosing not to use them.
After my dh was dx with Alz approx. 5 years ago at the age of 59 I immediately did all the research I could regarding this illness. The major thing that stood out in my decision making whether to use Alz. drugs vs not using them was the fact that this was considered a terminal illness.
I think I faced this illness like I would any terminal illness that gets progressively worse and care becomes more difficult. I wanted to do anything and everything I could to slow the progression. Therefore, I opt for him to take the drugs that might slow down the progression as well as the black box drugs when he became very paranoid and other aggressive behavior became too difficult for me to handle. Fortunately, he is now off those black box drugs and doing fine considering he probably is in all of stage 5 maybe some stage 6 but very mellow.
I am fairly anti-medication, but my husband is not. His diagnosis is Lewy Body Dementia, so he takes Sinemet and Aricept as well as medications for other issues. His decline has been much slower than I ever expected--three years after diagnosis he still reports that his friends in his drinking liberals group tell him how much they appreciate his contributions to the conversation. Has the Aricept masked the progress of the disease? Or has the coconut oil and MCT oil he takes made a difference? Or was he going to progress slowly whatever we did? Since your husband wants to still work, you might consider his trying Aricept. I know someone in another group who said her husband was able to work two years longer because of Aricept. You can always stop it if he gets more difficult.
Mary, I never had my DH take medication for his vascular dementia from the very beginning. I had done a lot of research before he was even diagnosed and every bit of information I got said basicly the same thing. That the side affects were bad...anger, paranoia, hallucinations, etc, etc, etc,. Then his dr. dianosed the dementia after and MRI was done and two things he said to us that made me know that we had a good dr. was 1) There are a couple of medications that we could put him on but after a while they quit working and there are a lot of side affects that make the disease much worse to deal with. So as long as he is not having any problem dealing with any of the things that are going on with him, just leave him alone (pharmecutical wise) 2) There is an herb that could do some good with the plaque in his brain and that is milk thistle.
I was shocked, not only is a dr. recommending not giving him medication but he is also recommending an herb. To me that was unheard of. I didn't even tell him what I had researched at that time but I have never regretted not giving him medication for the dementia.
My FIL was not on medication until afer my MIL died in 2001. He went into the VA facility where they put him on Namenda, Vitamin D, mulit vitamin, and later I think it was Seroquel. My MIL gave him St John's Wort, Gingko, and they drank tea many times a day. She kept him busy tracing pictures in coloring books and I am sure more. He was a runner and I think the stress of that highly contributed to her fatal heart attack.
My husband is on galantamine and natural supplements. We have talked about stopping the galantamine and if we wanted to I am sure the neurologist would not stop us. My gut feeling is that none of the drugs really help the disease at all.
If you click on Dr Josh thread in there he talks about his feelings regarding the drugs.
mary--all the symptoms you listed (sleeplessness, anxiety, hallucinations, paranoia) are part of AD. There may be some patients in whom the use of the AD meds exacerbates those symptoms, but for most, I believe they do not. As a matter of fact, the psychiatrist treating my husband recently told me that he sees many patients whose aggression is tempered by taking Namenda.
Your husband's work situation sounds exactly like my husband's was when he was dx'd with MCI. Whether he gets on the meds or not, a forced retirement will probably have to happen sooner or later. We were lucky, my husband's company was bought out and his job was abolished. He never was told that he was being let go because he couldn't perform anymore, which I am tremendously grateful for. Is there a way you can speak to your husband's boss and enlist his/her help in concocting a "cover story" -- a more humane solution than forced retirement?
My wife's symptoms started IN HINDSIGHT at age 55. She was fired from 5 nursing jobs in two years. There was certainty "stress" in our DINK marriage about her inability to hold onto a job. ("How can you be so stupid?") Only after the Dx at age 57 did I understand and 'forgive' her. I put her on Aricept at Dx.
Our income was suddenly cut in half. Time to go for SSA disability. It took about a year to get to the disability medical evaluation. She had such good and bad days that I was afraid that she would not 'fail' the evaluation and she would be turned down as being not that bad. So, I took her off the Aricept a week before the evaluation. (a risky thing to do) By the time of the evaluation her abilities had dropped so far so fast that I was surprised. She was awarded the disability without question and I REstarted the meds hoping that her skills and abilities would improve. THANKFULLY they did! (sometimes lost abilities never return)
It has now been about 3 years since the evaluation and her abilities WITH meds is about equal to what she did without them back then. I would not stop them again. I have added Namenda but have no way to evaluate if it 'helps' because I do not intend to stop them again. (until the end stage comes)
As you are probably aware Meds are not a cure but can only blunt the decline. I will maintain the meds because HOPEFULLY in 3 years she can still dress herself and in 5 years she can still toilet herself. Of course every dementia pt is different.
All the info I found about the uselessness of the meds was related to giving them to end stage hospice type patients. In these cases I do believe that their use crosses over into insurance fraud and bill padding. BUT, when is the line crossed that the meds can no longer slow the decline?? THAT is a real question.
m-mman, I agree with you, there is no way to evaluate if the meds are helping, but my Dh has been on them (Aricept & Namenda) since his DX in ’06 & didn’t experience any side effects. Then earlier this year I stopped the Namenda because I forgot to order it online & after reading that it might not be effective after 3 years. Well within a week & a half his demeanor changed & he became aggressive. I started him back on Namenda & he mellowed out.
I'm dealing with VaD in my DH, coupled with Mental Illness, prior to DX. His Psychiatrist(for Mental Illness) had him try 3 months of Aricept when DH complained of memoryt Issues. Actually told him if it worked he had Alz-0-if not he didn't. It only added to his agitation and confusion--stopped it. Not Alz. He is on several meds--all for symptoms. Lamictal replace the Tegretol givenm for excessive temper storms--like epilepsy of the Temper center. Geodon replaced Thorazine--moods, confusion, etc. Tghe first two he'd been on for over 18 years. What I know, is that the proposal to put him into a NH at Dx was wrong for him, then. I fully believe that with some in-home help and meds as needed, we've had 5 1/2 years we would have lost. He is now Solidly in Stage 6, flirting with Stage 7,and we're waiting out the waiting list foprpacement, as much because my own disability is interferring with my ability to take care of him as the fact he is rapidly declining even more. I see it all the time now as the damage continues to occur.
IMHO our LOs should not be left to suffer through the agitation, fear, confusion, paranoia, etc. when we have the means to ease them, giving them a better quality of life , however long, or short.
Wow, The patient has VaD with mental illness and a psychiatrist wants to use Aricept as a diagnosis tool??? !!! This seems like a very inappropriate use and one that would give the meds we all benefit from a bad name. Sheesh . . .
It does reinforce for all new readers the value of getting a good diagnosis from a doctor qualified to make a dementia diagnosis using all the latest testing methods and materials.
Without a cure meds only adjust the symptoms and the greater insight you can have to the underline disease, the greater the chance of using the PROPER meds to make your LO's behaviors manageable so you can enjoy (endure?) as much time together as possible.
So much is discussed about easing the symptoms of dementia by; looking at old pictures, playing music, going to museums, etc. why would there be an objection to using a TARGETED medication that would lessen an (objectionable) symptom?
From this thread and others one thing proves very true: if you have seen on Alzheimer, you have seen one. Never know how they will react, if they will help, which ones if any will help, etc.
My husband has been on Aricept since diagnosis 11 years ago--on Namenda for 4 or 5 years with no side efects. I have no way of knowing if they are helpful. Earlier this year I tried taking he off of both (tried one at a time). I could detect no difference either good or bad when he was off them, but on the chance that they might be helping I decided to continue both. Our PCP, because of his personal family experience, strongly recommended that I continue the meds. He has been on coconut oil and MCT oil for almost three years and I continue that because I know what a difference it has made.
So what we collectively seem to be saying is that IF he isn't showing signs of stress, aggression, paranoia, etc, no need for meds until he does but that THEN they might well be helpful. I think a lot of us here with our stars or near there got diagnoses several years ago and when our spouses were farther along than MCI. Because awareness has been raised of dementia in the last few years, some doctors are prescribing the drugs at an earlier stage before the nastier behaviors raise their ugly heads IN HOPES OF HEADING THEM OFF. I think I would hold off on taking them at that point because they DO seem to have limited time before their effectiveness wears off.
If you read the literature and the "stages" which were written describing people's typical behavior WITHOUT meds you will see that the aggression etc ARE part of the disease for many people BUT NOT ALL. I had not seen lit saying that namenda or aricept CAUSED aggression or sun downing or paranoia (diarrhea, yes!). Seroquel or some of the anti psychotics do.. But you don't go to those first off and not until you need SOMETHING to MANAGE BEHAVIORS, not to slow disease progression down. Hate to say it but very few get through the years and years of this without some med management, both for the patient AND the spouse.
Thought the following was interesting and I like the doctor's attitude. It kind of goes with your question.
Johns Hopkins Health Alert
Does Namenda Work? Dr. Rabins Addresses a Difficult Question Comments (1)
In this excerpt from a recent issue of the Memory Disorders Bulletin, medical editor Dr. Peter V. Rabins confronts the difficult question: What do you do when a caregiver asks, "Dr. Rabins, do you think that Namenda is really working?"
Namenda (memantine) was widely available for about 20 years in Europe before it received approval in 2003 for Alzheimer’s disease therapy from the Food and Drug Administration (FDA). Namenda is approved for people with moderate and severe Alzheimer’s disease, but some doctors, including memory and dementia experts, offer it to all of their patients with Alzheimer's, regardless of the severity of their symptoms.
Many doctors who are specialists in Parkinson's disease and frontotemporal dementia are using Namenda for their patients with dementia symptoms, even though it is not FDA-approved for that. While it is perfectly within their purview to use a medication "off label" for Alzheimer’s disease if they feel it's warranted, I hope studies will be carried out to tell us whether Namenda does have positive benefits.
There is no cure for Alzheimer’s disease, so the goal of drug therapy for Alzheimer’s disease is to help manage the symptoms. Improvement in cognition is an indicator that Namenda might be working. Therefore, when a caregiver asks me if I think that Namenda is working or not for their loved one, I answer "yes" only when I can see an improvement on a scale that measures cognition or thinking.
Should you choose Namenda? The decision to use Namenda depends more on the preferences of the Alzheimer’s disease patient and his or her family than on the science. Many families and caregivers say, "If Namenda might help, even a little bit, I want my loved one to take it."
On the other hand, some families and patients say, "I don't want to take something that will only make a small difference." For these individuals, I work to get them as much information about Alzheimer’s disease as possible to help manage any behavioral or psychiatric symptoms and to address the financial, legal, ethical and social problems they are facing.
There is no "right" or "wrong" when it comes to this issue. It is the patient and family who should make the final decision, not the doctor. I feel the same way about stopping Namenda. It is up to the patient and family to decide once they are given the information in a balanced and fair manner.
However, colleagues whose opinions I value feel that a drug such as Namenda offers false hope and the benefit is so minimal that it should not be used unless family members feel strongly that they want to try it with their loved one.
Very good article. Thanks for posting. I think even some of us whose spouse was given Namenda within the first year or so might even make a different decision now that the drug seems to be of little benefit. I know in the beginning I thought, why do I want him to take a drug that might prolong this terrible illness. But, his neuro told me it will be his behavior that will probably be better if he takes the drug and once he reaches a certain stage it will do nothing or very little. He said the drug does not prolong the illness. Other doctors might say something different.
Also, in the first 2 or 3 years he did very well on the MMMe tests which really was a shock to me. Now, he couldn't even understand how to turn the clocks back an hour yesterday morning including his watch.
JudithKB - I have argued with people who believe that the drugs will alter the course of the disease. The old manager that was here in the park when we arrived was certain she knew more than me cause a relative was on the drug and they lasted a long time. I tried to explain all the drugs do is allow them to stay cognitively functioning longer, if it works, but the disease is still destroying their brain. And, people just don't understand the saying 'if you have seen one Alzheimer's patient you have seen one'. My FIL last 25 years - nor my husband or me want him to last that long. He has been on galantamine since 2008 and we have talked about stopping to see if it has helped. Fortunately for us it only cost $8 a month through the VA - most of you pay outrageous amounts for your meds.
As for the MMSE test - read Joan's blogs. Sid more or less aced them until recently. But, we all knew he was not that good - just good in the areas the test tested.
Thank you all for your responses. Your wisdom is priceless!
It seems if a person is going to experience certain symptoms (hallucinations, etc), it will be regardless of AD meds. I guess I shouldn't be so afraid of having DH try them...
If the AD meds ( Aricept, Excelon, etc) provide a patient a temporary plateau, then the question must be - when would the plateau be of most benefit for the individual? If my DH was retired I might postpone it, but since my DH is adamant about continuing to work, I guess now would be the most beneficial time for him.
I shall ponder, and pray, and try to find some way to convince DH to go back in for a follow-up. Wish me luck! And thanks again!
If you decide to try Aricept, it is available in generic now. For us the cost for a three month supply before insurance payment is now $23--a year ago it was $598.
I agree with Charlotte, if my DH was still working I would have invited the medication to help him through his work day but since he doesn't have to work any more I opted to do without.
Mary: I can't help but weigh in here. My wife is now in severe stage. after seven years. She has early-onset ALZ. Namenda and Airicept smoothed out her behavior in the early going. I noticed a moderate improvement after she had been on them. My research has taught me that these types of meds can slow the process. Were I to be diagnosed with ALZ I'd leap at the opportunity to take these meds even if there were only the slightest chance that they might slow the progression. There are many sides, these are mine. The very best to you on your journey. Great people here!
soolow: Alzheimer's drugs don't work for everyone, and they can't cure the disease or stop its progression. Over time, their effects wear off. (from mayo clinic)
If the drugs work for our spouse it helps them to stay cognitive functioning longer while the disease progresses on. It has not shown to slow it down.
My hubby was about stage 5 when diagnosed. In the beginning I gave him the meds as prescribed by the doctor. He started on Namenda 5mg 2xday. He worked up to 10mg 2xday. Then Aricept was added.I tried adding other things along the was - gingko, vitamin C, maitake mushrooms, Chinese moss extract. Then they started Depakote for the aggression and Trazadone for sleep. After his first major seizure in April, the Aricept was stopped because "it may bring on seizures". After a week in the hospital they prescribed Depakote sprinkles 125mg and wanted me to give him 5 at bedtime and none the rest of the day. It was like a roller coaster ride for him and guaranteed, he would wet himself during the night. Quit those!! Then the doctor suggested that he go back on Aricept. I said "Wait a minute. You just told me they could cause seizures". No Aricept!! Then he started Keppra for seizures. All he did was sit around totally out of it with his mouth hanging open and drooling. No more Keppra. Last visit to the dr I was told I may as well quit the Namenda because it wasn't really doing anything anymore. I tried, but could see that it helped some so I have continued it. I am not afraid to try anything with the meds. I am the one with him 24/7 and no one knows better than me how the meds affect him. We are down to Namenda 10mg 2xday and Trazadone 100mg @bedtime and coumadin. I may try to wean him off Namenda at some point in the future, but not now. I have already tried not giving him the evening dose and it was just not worth it. I don't do this stuff willy-nilly. I always let the doctor know what I am up to. And he agrees that for my husband, I am the expert and he the consultant since he sees him twice a year. (Twice a year and a bezillion phone calls!)
I did the meds in the beginning, but over time have weened him off of everything but his heart meds. Stopped the Aricept first, then the Namenda, and this will be his last week on anti-depressant. I didn't see any change when I quit the Alz meds, and I've been cutting back the anti-depressant for a month, and see no change there, either. The only doctor he sees these days is his PC, have stopped taking him to Neurologist and Cardiologist, as his PC will prescribe his heart meds. My opinion only, Alzheimer's is fatal, and slowing it down or whatever is cruel, not just to DH but the rest of the family as well. Again, only my opinion....
Had been on both aricept and namenda. . Nothing other than vitamins now. . occasional bladder med for inflamed UTI's or symptoms of the kind. Agree with Diane V.
DianeV - agree. Prolonging this illness is cruel to all. My hb is still high functioning but we have talked and when he starts loosing ground we will stop the galantamine.
Busy day yesterday, wife accompanied me on my activites. Got home late and exhaused. She would not leave me alone to do my emails. Finally went to bed at 9:00 and she just would not sleep(!) Up & down, clanking & banging, talking incessantly. . . . I was angry because she had not done this before and I had to get up again early today.
So, I am lying in bed thinking that these are new AD behaviors and something I guess that I will have to live with, when it hit me, I forgot her nighttime Aricept & Namenda. (opps!)
So I gave them at 11:00 PM and within a half an hour she settled down and slept all night. (happy, happy, joy, joy!) She has also had a good day today (so far)
m-mman, you give me a lot to think about. I just put the last of the Namenda in DH’s pill holder for next week & I was considering not reordering it. The Aricept has gone generic so it isn’t expensive anymore, but the Namenda still is. He has been on Namenda for about 5 years & when I did take him off of it earlier this year he too had a personality change, so after about 2 weeks I started him back on it & he calmed right down. Now come to think of it, it isn’t that expensive with our insurance. I guess one of the reasons I thought about discontinuing it is because there is so much discussion here about the fact that Aricept & Namenda usually lose their effectiveness after, what…….3 years? BUT as we also say here everyone is different & what helps one may not help another. I guess I’ll just keep him on it & not rock the boat (it rocks enough by itself!)
From the psychiatrist at Steve's ALF--"it seems to help with agitation".
At a dementia conference, his former neuro said they are seeing moderate benefit from Namenda until end of life. (Did not elaborate on what type of benefit.)
Bottom line, it sounds like there may be some benefit in terms of mood--previously, all I had heard about was some improvement in functioning (ADL's).
This would seem to support what ElaineH said above about her DH calming back down after Namenda restarted.
Oh marilyn, you just made up my mind for me. I am ordering his Namenda today. That is exactly what happened last time when I took him off it & I don’t want to repeat that again! This is exactly what this website is all about, sharing information, in addition to having people who understand exactly what you are going through. Thank you marilyn & THANK YOU Joan!
My hubby now takes only Namenda, a sleeping pill before bed, and his blood thinner. I tried to stop the Namenda, but his agitation increased. Today we go to the PC and I will ask for Marinol that his neurologist denied us. I think if there's a snowball's chance in hell that Marinol will help, we should get that chance. I haven't heard anything bad about it yet and I want to see for myself. If chicken poop would improve his quality of life, I would feed it to him!!!
Well, won over the family doctor and he wrote the scrip for Marinol for my husband. Then we went to the pharmacy to try to fill it and my happiness got blown all to hell. The Medicare Part D that we pay for every month won't cover it for Alzheimer's. They will cover it for nausea. It has to be pre-authorized and some communication between the doctor and the Part D. I went out to the parking lot and sat in the car and bawled. I have checked around and it costs from $313 up to $400 per month. The pharmacist is calling our doctor to let him know what he will need to say to be approved. And if all else fails, the pharmacist will give be all the discounts she can find and price match to the lowest price that I find. The most I am going to have to pay is around $275. One month's worth should give us an idea if it is helping or not. I would almost (key word-almost) peddle my ass on a street corner to get that medicine for him. Thankfully, I can scrounge up the first month and if I have to, I will cash in his 401K. I will try anything to make his life better for as long as I can. Thanks for listening. I love you people!!!
a quick google found marinol 2.5 x30day supply for 238dol BEFORE any insurance. even if you didnt have insurance its still about 40dol cheaper than the 275. drugstoredotcom is the website to review. hope this helps. your dr would have to get in touch with them about how to order and maybe you could call them with your insurance plan and just get an idea how much after insurances are applied. get all the info on pricing then hold your druggist to the fire to honor the same discounts.
This has been an interesting post. Everyone has such different experiences. My hubs is just 47 and very healthy except for Alz. He is prob stage 4 but I see glimpses of stage 5. He was on Aricept. But we traveled to Atlanta with my son's baseball team for a week and he forgot to pack the Aricept. (I usually double check everything, but didn't this time). So for a week in an unfamiliar hotel and location, lots of people and schedule changes... I thought we were doomed. But Guess what.........I saw NO DIFFERENCE!!! That convinced me that the Aricept was useless for my hubs. He is now on Prozac for the anger issues, but that is it.
Just for future reference for others: If you are traveling and forget medication for you spouse or yourself, you can usually just go to any pharmacy and they will contact your pharmacist and get the amount of drugs you need for the rest of the trip. This is true even if you are on a cruise ship. They contact the pharmacy for you and the drug is waiting at their next stop and delivered to the ship. It is very expensive, but if it is a very important medication you may want to do it anyway. Also, you can file a claim when you get home against the cruise insurance and your health provider. If you are in port you probably could go to the pharmacy on land and it wouldn't be as expensive as the cruise ship.
When I didn't take enough medication for my dh on a 2 week cruise I went to the ship dr. and he took care of everything. He suggested to bring all medications in their original containers. With 15 medications it is a big bag, but I will do it next time.
I think the problem in deciding if the ALZ drugs "work" are the standards used to measure their effectiveness.
Does an antibiotic work? You can grow cultures and look for objective improvements. (is there still a fever?) Does a chemotherapy work? You can take x-rays to see if the tumor is shrinking.
The effectiveness of Dementia drugs is seen ONLY in the changes of behavior. We all know how hard it is to decide what stage our LO is at because the lines are not that clear. Add that to the axiom that 'If you have seen one AD person you have seen one AD person" and when any testing is done (several hundred patients?) how can any researcher ever really correlate all the many behaviors for each of them to determine 'effectiveness'? (again, how accurate is the disease staging that they used for the trial?)
Hummmmm. . . . . Maybe the only correct approach is for each of us to experiment with each of or LOs to see what works for them and them alone . . ? After all the only results that matter are in the daily behaviors that each of us knows best.
Jim - you are correct in that we never know. What works for one may not work for another. This includes all drugs. Also, it may be the timing as to where the disease is affecting them. I am wondering with Namenda if for some it may depend on where in the disease they are at. When my hb tried it and had the bad side effects he was in the early stages. In later stages it may affect him differently. But then, who wants to prolong it once they get further along? Once they are in the childhood stages dependent on others? My FIL never was on any until my MIL died - he was probably late stage 6 still able to bath, dress and was not incontinent. When he went into the VA Alzheimer's unit it was not long he became incontinent and needed help with daily things but he still walked alot. Did the downturn happen because his environment changed? the drug? they enabled this downturn? Did the drug somehow prolong his life thus the reason a 25 year AD journey?
Charlotte--none of the AD drugs are supposed to prolong life, they don't affect the underlying disease process. (There still isn't concensus on the cause.) The only claims that are made for the drugs is that they affect symptoms, for some of the patients, for some unspecified length of time.
Can anyone please tell me if Resperdal has been good for their LO... My DH has only been on it for three weeks now, first starting with 250mg at night and now another 250 mg in the morning. I don't know if it's the ALZ that's making him more agitated and angry as he declines , but it seems after the Res. about an hour or so, he's like that, more angry...and with an extra burst of energy.
This morning he reckons he gave me an envelope of money to put away and he wants it back....what do I say?...he got more and more agitated and angry when I tried to explain he didn't...but no he wouldn't have it. Screamed and yell , swore at me...then he grabbed a knife and was going to stab himself..OMG, it scared the life out of me. I started to cry, he said I'm making him like this, that I'm trying to have him commited..I'm doing it on purpose. Should I take him off the Resperdal...
Julia, call you doctor right away and let him/her know that Risperdal is not the drug for your husband. There are other drugs that can be tried. I now how heartbreaking this is....
get rid of anything that can be a weapon asap. take him off the med and call the dr tonite. if all else fails and you get scared, take him to the ER and explain the situation. they wil give him something to calm him down and maybe keep him overnight so you can rest. many of the meds work opposite in some folks. if hes threatened physical harm its time you may need to rethink the situation and if you can keep him safely at home.