Josh, What are your thoughts on the Texas Catheter? Being my husband is still a young (60 yrs old) man he still urinates a great deal. Hospice & myself have tried every kind of incontinence product to keep him dry with no luck. We tried the Texas Catheter once before, which was great at keeping him dry, however, due to it being the wrong size it caused a breakdown. Since everything is healed we are trying a different size starting today. Thanks in advance for any advice.
Hi Kadee Can't say I'm a huge fan. It causes maceration (moist skin) of the penis which leads to skin breakdown. For temporary situations it's okay. we use it in the hospital judiciously. I'll ask my nurses about this (this among many things may is one of the things nurses can know a great deal more than the docs!) josh
My mom has progressed to extreme fatigue. I say her depression med needs adjusted or changed( on Effexer 37.5mg since 09). Regular Dr. says not depression, just a general progression of Alzh. I feel this came on too sudden. All blood work checks out. Dr says Riddilin. He saw I didn't take to that and he said 5 hr energy drink. I see only a smidgen for difference. He said to see a Neurologist. What does a Neurologist do? Should we be going to a Geriatric dr? Has been on Namenda for almost 4 years. Was on Arecept but too much dreaming. The appetite is getting worse too. Not much interest in anything because she is too tired. When she gets up at 11am, she says she is so tired she wants to go back to bed. Sometimes she does. When she gets up at 2 or 3 then, there is some energy for the rest of the day but not much. Not roaming the house all night but seems to be awake at times during the night. I just want her to get more out of life then just sitting around. The Alzh. is already taking too much of it away. She had been working in her flower bed and mowing grass, now nothing. Please, some advice would help Bopeep3.
Hi Kadee I'm on inpatient service on our ACE unit (acute care of the elderly) at Presbyterian hospital. We use a lot of Texas/condom catheters. I asked some of the nurses about your husband and looked up some articles. The two main tips I got was to make sure the catheter was snug and to use Skin Prep (or equivalent) to keep the skin from breaking down. Skin prep puts a thin layer of protective coating on healthy skin to make it more impervious to moisture.
After doing some reading, texas catheter's are more comfortable and less prone to infection than an indwelling foley catheter. So that's good. I should talk to my director of nursing at my nursing home. But in terms of keeping him clean and dry I think you have three options I can think of: have him drink less (the most difficult option I would think), change him very frequently (and use pads) (also not easy in someone who is a hoyer lift) and use the condom catheter. I think those are tough choices and you're doing the best anyone can.
Hi Bopeep Sounds like there are potentially several issues: Fatigue, Depression, Apathy, and sleep issues. All of those are very different. Fatigue may be due to an underlying medical problem such as a low blood count, medications, infection etc. People with fatigue from medical problems wake up feeling good and lose their energy quickly. People with sleep disorders (also very common in AD) can have fragmented sleep which leaves them tired when they first wake up. So that is one of the big divisions I make when someone comes to me and they say they are tired all the time. I ask them, do you feel tired when you first wake up? Or do you feel good but within an hours or so, you lose all your energy? If they say they feel tired when they first wake up, I focus on sleep issues. Sleep can be disturbed for a million reasons: pain, depression, restless leg syndrome, caffeine, loss of internal clock regulation, going to the bathroom, medications etc.
Apathy is a very unique issue and very disturbing for families because patients seem like they are lazy. Apathy is unique because it doesn't respond to medications very well. I have prescribed Ritalin twice. I remember thinking it was very odd. There is very little in the way of trials on Ritalin, but it is used. I'll ask around. Apathy is a hallmark of Parkinson's, Lewy body dementia and really any dementia.
I'll be honest, trying to tease all these out is not easy. If I had patient with these problems, I'd probably want them to be evaluated by geripsych to tease out the depression vs apathy issue, possibly a sleep person and by myself to evaluate the chronic medical problems/med. For me that's easy because my sleep person, my geripsych person are both in my hallway and I can refer back and forth easily and patients can schedule all the appointments on the same day. I'm not sure how I'd feel having someone run around to a bunch of docs.
I hope this suggests a way of approaching what you have mentioned. I agree, families often want to see their loved one enjoy as much of life as possible and it's tough when one is physically capable but unable to due cognitive/psych reasons. josh
Josh Thanks for the info. You touched on everything i mentioned, but I am still in a quandary on what to do next. Like you said, it is hard to run to all those drs., especially when the patient doesn't want to go, because nothing is wrong with her! I did want to increase her depression med, but how to do that when her regular dr. doesn't see it necessary. Also, maybe a sleeping aid, stronger then melatonin, would help. My mom says she is very mad at herself for being this tired and just sitting around all the time. So she is trying to reason things out on her actions. If it was apathy, would she be trying to do this or even care? She doesn't have pain, restless leg, caffeine, going to the bathroom problems, and the meds have not been changed from before this. Am I right in thinking it is depression and a sleep issue? How hard it is for you to try and help us, through email, when you really need to see us in person, but it is so nice to bounce things off you. It sounds like Ritalin is not largely used on Alzh. patients from your point of view. What do you recommend for your patients who have fragmented sleep? Sorry I am demanding so many answers. This is so easy compared to trying to think of all the stuff to ask while you are in the drs. office, when he throws new things at you. Thanks for any info you send my way. Bopeep3
Josh, Thank you very much for your response to me question. He did have some breakdown...so we have removed the Texas Catheter for the time being. I don't think they applied Skin Prep, I will mention to Hospice this morning. It was great when he was not wet, however, previously he had no breakdowns...I would like to keep it that way.
bopeep3 - you need to do what the rest of us do with our spouses: you write it all down and give to the doctor. There is too much to remember. If it takes a 'fiblet' to get her to the doctor, then do it that way.
Josh, I have a question regarding your blog posting of the graphs of the Aricept/Namenda data. It would seem to me that the graph shows that there is little or no advantage to using Aricept. Yes, the end-point for Aricept is several points better than the non-treated group, but they started out at a better point, so the level of decline in abilities is identical in both groups. Is this a valid observation?
The end point of the Aricept/Namenda group was better than the Aricept group alone. It would have been interesting to see data for Namenda alone.
I have an appointment tomorrow afternoon to talk to the Dr. about eliminating both Aricept and Namenda (not both at the same time). The information you provided has made it easier for me to evaluate the situation. I was going to do this last February but fortunately I didn’t. My husband has declined significantly in these past few months and I would have blamed his decline on the discontinuing of the meds. I probably would have had major guilt feelings for stopping them—putting conserving resources over quality of life. But since the decline is already there, the decision is easier.
Hi Lori, Sorry for the late reply. I hope you have a chance to read this. The study I reviewed actually showed that aricept may have an increasing benefit over time. And statistically there WAS a difference between placebo and aricept. By picture, it's obvious that it isn't a huge difference. So the "optimist" may say that while it is a small difference, the difference increases over time. The "pessimist" may say that they medicine has a very minimal difference. (I'm not trying to peg you as a pessimist or optimist-just using that to say that people may look at the same data through different lenses). Oh, the difference between aricept and placebo is not just due to starting point but also the slope of the line. The details are in the article itself. I would love to see a picture of namenda alone too.
Obviously please talk it over with your doctor. I've chatted quite a bit with our Penn Memory Center faculty who believe the drop off in cognition from stopping meds is overblown. (for what it's worth). I stop these meds as often as I start them.
I'm not aware of any research indicating that aricept by itself, aricept in combination with namenda, or namenda by itself can possibly be effective for more than 18-24 months ... at most ... when it comes to slowing the rate of decline. And for many people, it is not effective at all. If these meds have been proven effective for longer periods of time, I would certainly expect the big pharma companies to state such results clearly and with great fanfare ... but they don't. I suspect this is because there is simply no research data to validate such effectiveness over 3, 4, or 5 years of time. Am I missing something?
Yup, this is the dilemma with the dementia medications. The FDA only asks for 6 month studies in order for medications to be approved. In 2008, the American College of Physicians with the American Academy of Family Physicians authorized an evidence review. Published in the Annals of Internal Medicine I think (I can post a link tomorrow). They found that all the placebo controlled studies were of 6 months duration, a couple were 1 year and I think 1 was 2 years in length. The Mass General study published August 2008 was a retrospective cohort study (i.e. studied after the fact). They had data much longer but on average they had data for at last 4 years. Their data suggested that there was an increasing benefit over time. Lots of limitations to a study that is retrospective. That is why the data is at best suggestive and that is also why the pharma companies can not use it in advertisement. Again, two people can look at the same data and draw different conclusions. One may say it seems to be disease modifying and has increasing benefit over time, another may say it is a retrospective study and discount it altogether. Things in medicine are not always clear cut. This is one of those areas.
One of the reasons people say there is a 6 month delay with these medications is because on average people lose 7 points per year on their ADAS-cog score and on the 6 month studies there was a difference of 3-4 points on adas-cog between treatment and placebo. But who knows what would have happened if you actually had a really well done placebo controlled study that went on for 5 years?
I would assume that it would be difficult to study under any circumstances since patients tend to vary widely in how Alz. affects them. You see it here often that some in advanced stages of the disease are much more active and cognoscente than others while people in the early stages are either almost "normal" or are totally out of touch with reality.
Claude was on Exelon and Namenda for over four years. I don't know if they really helped all that much, but I do feel they delayed the inevidable.
After several falls, his PCP put him on Home Health Care with PT and OT. The therapy helped him with his balance and upper body strength. We knew he was declining but didn't realize how much until the Home Health RN notified his PCP. He then qualified for Hospice.
The Hospice doctor immediately took him off the Exelon and Namenda, and immediately he got much worse. Three months later, he passed on.
As we are all know, each alzheimer patient reacts differently so it's difficult to know how your DH would react.
Hi Ann, Early on, there were some drug company sponsored studies that suggested that stopping aricept would lead to a sudden decline in cognition that would not be able to be regained even if restarting aricept. But I have not seen any studies in the last 5-10 years that duplicated some of those early results. Talking to the Penn Memory Center guys, they feel that earl info was overblown and is not real. And conceptually it doesn't make sense that a drug that does not help most of the people who take it would then harm most of the people who stop it. either it has an effect or it doesn't. In terms of withdrawal symptoms, there aren't any that I know of. When I stop aricept in people, I never taper it. For some people they do respond quite significantly and stopping it may cause some decline. I did see one study in which restarting medications 3 weeks after stopping it would allow a person to regain lost cognition. So if someone is really worried about losing cognition, I would bring them back in 3 weeks and retest their cognition. josh
My question concerns ALL--acute lymphocytic leukemia: Is it common for AD sufferers to devlop this blood disorder? My husband is 62, diagnosed with AD about 5 yrs ago. He has been taking Namenda for that long, and was put on the Exelon patch about 3.5 yrs ago. In the last year, his WBCs have been steadily rising...specifically the lymphocyte component...WBC level was normal at 8500 about 18mos. ago; 6 months later, 12,000; 1 month later was 14,000; 3-4 mos later 18,000; and most recently about 2 wks ago had risen to 31,000. Our PCP has referred us to a Hematologist for a bone marrow biopsy. My DH is probably in early stage 6 of Alz., has visual agnosia,needs assist with most ADLs; feeds himself, walks with some assist in unfamiliar surroundings. Lately has become more tired than usual esp. during day, his appetite isn't as good, some people have commented that he looks pale at times. Does AD cause a person to age faster, making it more likely he/she will develop ALL which is more common in the elderly? Thank you for any information you could share with me, Dr. Josh.
Hi Bella Off the top of my head, I can't think of any association between ALL and AD. ALL is often a problem of childhood. I'll be interested in hearing what heme/onc has to say. Josh
Josh, I have a question about Aricept. My husband (81 years old) has been on it since he was diagnosed in December 2000. His decline all those years has been very gradual. However, in the past six months his decline has been at a much accelerated pace. He started on the generic for Aricept in mid-October. I was just wondering if there is something different in the generic that might have caused the more rapid decline. Have you noticed any difference with any of your patients?
Hi Lori, I haven't seen anything different yet about generic aricept. The FDA does allow for a certain percentage difference in the amount of active ingredient (I think up to 20%) so it may be possible that the generic you are getting may have 20% less or more active ingredient than the brand. It may be worth a try to use brand again, but I'd think about other causes of decline (like being in the midstage of the disease, other medications, infection, thyroid issues etc). MMSE declines by about 1-2 points per year between 20-30,5-7 points per year between 10-20 and 1-2 points per year between 0-10 points. So the decline is not necessarily smooth and steady. josh
Two weeks ago both of my husbands lungs partially collapsed. Does this sound like he is progressing into the last stage? He doesn't talk much, is being fed, walks in a walker. Last week when I went to the nursing home he was sitting up in his Geri chair and he was awake but he wouldn't open his eyes. I tried for 45 minutes to talk with him, but he didn't open them. There is no communication anymore, all I do is hold his hand.
Hi Paula I'm sorry to hear that. Sounds somewhat serious. The problem is that while Alzheimer's is supposed to progress steadily (unlike stroke related dementia), there are moments of other complications that lead to more sudden decline. The brain can only take so much and any other injury (such as infection) can lead to a stepwise drop in cognition that otherwise would have been steady in its decline. It's really really hard to predict how a person with dementia will recover after an injury/illness. There may be full recovery, partial recovery or no recovery. Each day will give you a better idea of his trajectory. It's by slow observation. josh
Josh, here's a question for you that I cannot find answered anywhere in the literature. Aside from having AD, my wife also has a serious coronary artery disease. For unknown reasons, every so often she must endure severe chest/arm/jaw pain when her left anterior descending artery completely closes up and blocks the blood flow. Her condition, as rare as it is, was actually documented and filmed during an angiogram. As with AD, there is no effective treatment or cure, so for the past 17 years she's been 'treated' with what the doctors have termed a 'kitchen sink cocktail' of assorted meds that is adjusted periodically whenever she has major episodes of spasm. The cocktail includes nitroglycerine, calcium channel blocker, capillary vasodilator, full aspirin, beta blocker, etc. My question is this: We know that a traumatic brain injury can cause a significant decline in memory and cognitive functioning for someone with AD. Could some major heart episodes, major heart med adjustments, or even an angiogram procedure lead to significant worsening of memory and cognitive functioning in an AD patient? Thanks. Allan
Hi Allan, Off the top of my head, I do know that after coronary artery bypass surgery (CABG) and after carotid artery surgery, there is a measurable decline in cognitive function even in normal people. The list of medications that can cause memory problems is very very long and I would argue any med has that potential. I know a low blood pressure can be associated with worsening memory and it sounds like she is on a boatload of hypertension medications. As for angiogram, I haven't the faintest idea. I suppose it would have to do with the anesthesia, the dye and any alterations to hemodynamics (cardiac output, heart rate etc). I can't say I worry about that a whole lot (other than the anesthesia). josh
This is the first time I have heard about low blood pressure meds causing or worsening memory problems. Never had hypertension in his life but a heart attack in 2002 resulting in damage. . Since my dh has been on Diovan, his blood pressure has been quite low. Cardiologist said it is a trade-off when they take Diovan. He has had severe memory problems for approximately three years, starting when he had a defibrillator implanted. Defib was deemed necessary because of the low blood pressure. I maintain that if his meds had been adjusted, defib would not have been necessary. Defib has never fired in six years. Since dh is 85 yrs. old, doctors are quick to blame the Alzheimers on age.
Hhhmm... Defibrillators are for arrhythmia's not low BP. Can't say I'm a huge fan of them. Although some people need them to stay alive. In younger people there is no question that a BP of 90/60 can help prolong life after heart attacks and CHF (which I assume your husband has). But in older adults things like low sugars can cause memory problems. Let me look up a reference for the low BP but it's not necessarily as ideal in older adults.
My husband was taking Coreg and Diovan. His bp was very low and he passed out in the kitchen. This happened after dinner hence no low blood sugar. 911 was called and he was transported to hospital. By low bp I mean 65/52. We were told the defib would buy him more time. He never had arrhythmia. After the defib was implanted primary care physician reduced dosage of Coreg and Diovan, bp went up. As I mentioned before the defib has never fired in 6 years. I really think the reduced dosage of Coreg and Diovan would have taken care of the bp and there was really no necessity for the defib. Doctors justified the defib because he had heart damage from the heart attack in 2002.
Here's my guess: He was hospitalized for Low BP. He was found to have a low ejection fraction (EF) from his previous heart attack. If it is less than 30% than by the book, he would live longer with an ICD than without it because having an EF less than 30% puts a person at risk for arrhythmia. ICD's are a somewhat long discussion. I'm not a fan because it's not clear that it does anything to improve quality of life and many people get shocked accidentally and hate it. I think an ideal BP is 130-150 for the top number. Bottom number doesn't matter to me. Some cardiologists can get too aggressive and a person may look good on paper but in reality they look worse (i.e. low BP, low heart rate, low cholesterol but feel terrible).
http://www.ncbi.nlm.nih.gov/pubmed/20389075
It's very possible that your physicians thought through all of this and have a very good reason for keeping his BP on a much lower level but just didn't communicate it to you. Whenever something doesn't quite make sense I always leave open the possibility that there is a rationale that may make sense. Obviously they know your husband better than I do. You may need to simply ask them to explain themselves again.
We had a guy in our park whose defib misfired while he was setting up his camp - knocked him flat on his backside. Can you imagine if surviving if it had happened just an hour before while he was coming here on his motorcycle? Seems it can be just as much of a danger as a help.
Hi Dr Josh ,My Hb is diabetic and has ulcers on his toes now ,he has had 3 lots of antibiotics and one on his big toe from which the nail has come off giving concern isnt healing at all.His leg is swollen .Our Dr ordered an X ray to see if the infection had gone into the bone .Not had results yet ,I did wonder if that is the case could DH maybe have to have toes amputated which at his age 81 and not in very good health would not be good .Thank you for your time to answer our concerns
Rosieuk, so sorry to hear of this new issue with DH. hes been such a trooper these years.(as you have been) i hope the dr has some good advice for you with regards to the ulcers! divvi
Hi Rosieuk there are 4 reasons that wounds don't heal (generally): pressure, edema (swelling), poor circulation (poor blood flow) and infection. Generally if you reverse the reason, the wound will heal, if you don't reverse the reason, then it will not heal no matter what you do:amputation, skin graft, fancy dressing changes or focusing on the wrong cause.
Diabetic foot wounds are usually pressure wounds with some infection. But there is often a component of poor blood flow due to the diabetes itself.
If the etiology is only infection, then amputation will work If the etiology/cause is infection plus edema (swelling), amputating the toes will not work without fixing the swelling first in which case then it will work if the etiology is infection plus edema plus poor circulation, then you have to see at what point in his leg he has good circulation. Sometimes the good circulation goes almost to the toes and then stops. Then you can do what is called a transmetatarsal amputation and cut of the end half of the foot. Sometimes the good circulation stops above the knee in which you're looking at a pretty serious amputation above the knee.
Right now I'm on hospital service and we have a bunch of patients with various nonhealing wounds and this is what we're having to figure out. For a foot wound, an xray will show osteomyelitis (bone infection), blood work such as a complete blood count or ESR (sed rate) will also add to the diagnosis. ABI (ankle brachial index) is a blood pressure test that will tell roughly how good the circulation is (using a blood pressure cuff) and ultrasound can define the quality of the circulation. There are wound specialists too.
Toe amputations, in the grand scheme of things, are on the easier end of surgeries.
Thank you very much Dr Josh ,the main reason the ulcers started I think are because of poor circulation .A nurse has been dressing the wound but with Don having dementia he pulls the dressing off at night ,plus he will not keep the leg elevated .He does have a hospital appointment 2nd Sept so probably the pulses will be checked then.Thank you again for your help and explanations
My husband passed away last Friday. I am walking around in a fog and like always I have questions about this stupid disease. I was always told that pneumonia usually is the last problem. I was told by the doctor ( and he really should not be called a doctor) that the cause was Acute Cardio Pulmonary Failure. I tried to look it up and I know it is regarding lungs and heart, but WHAT HAPPENED.
Thank you
Mimi 2 hours ago editdelete I too will be interested in the reply to your question. When my mom died, and I called her primary care doctor's office to let them know she had died, the person kept asking what the cause of death was..I kept saying ALZ...and the other person kept saying no it was not the cause of death but contributed to it. I insisted it was ALZ ( and that is on the death cert)..the other person kept tryin to argue this point to which I finally said she never had a stroke or heart attack..she had a pacemaker which kept her going.The other person kept trying to tell me pneumonia was most likely it..it was like arguing with a wall.
Now for anyone on the boards who thinks I am one of those posting about a LO and not a spouse, may I remind you that my DH also has this disease.He has multiple health issues..he is diabetic, has IHD and vascular issues, and has had a lacunar (sp) stroke. So it would seem that if one of those conditions does not lead to his demise, then it would be ALZ.
Did your DH have any complicating illnesses? If so maybe that is where the issue lies. I hope Dr Josh can lend some light on this for the benefit of us all.
joshuy 2 hours ago editdelete Sorry to hear about your husband Paula.
I sign a handful of death certificates a week. I often put dementia down as a cause of death. Acute cardio pulmonary failure is just a fancy way of saying the heart stopped beating and he stopped breathing. It's not really a cause of death but a mechanism (it happens in everyone who dies-it's almost like saying the reason the person died is because they stopped living). Sometimes dementia causes an acute event like pneumonia, UTI, aspiration pneumonia. Sometimes it leads to weight loss which causes the heart to fail or the lungs to fail (loss of muscle mass). Sometimes the heart just slows down and stops (I've seen this in the hospital when someone is on monitors and we can watch it minute by minute until the patient passes away). Sometimes the person stops eating and develops acute kidney failure from dehydration (high potassium or failure to eliminate toxins) that also leads to heart arrhythmias. Sometimes it is something unrelated to the dementia such as a stroke or heart attack. Sometimes there's a blood clot to the lungs that develops suddenly too.
More often than not, if it is in a NH and there is no acute event (new shortness of breath, new pain) it is likely that the heart just slows down and stops. Maybe renal failure plays a role too. I'll ask one of our palliative care docs and get back to you all.
m-mman 56 minutes ago editdelete The fact that for decades doctors HAVE NOT put Alzheimer's (or other dementia) down as a cause of death is why this disease flys under the radar and is not recognized as the problem that it is.
In signing a death certificate the MD is suppose to list the "lethal chain". This, lead to that, which finally caused death by . . . I have heard some doctors state (incorrectly) that they were not permitted to list ALZ/dementia as a cause of death. That such a certificate would not be accepted by the authorities. So they list something else.
I do geneaolgy and I have tried to find AD/dementia in my wife's family. It is almost impossible because old death certificates simply did not list it.
Because too many death certificates for our type of victims are filled out lisitng 'heart attack' or 'cardio-pulmonary failure' is why ALZ is not (YET) one of the leading 'causes of death' in this country. ALZ is rapidly rising as a 'cause of death' because FINALLY more MDs are listing it. This change is supported/promoted by the ALZ Assoc in a big part because it draws more attention and MORE FUNDING for research. :-)
So Paula, Mimi and others, continue to support having ALZ (or other dementia) listed on the death certificate. It helps us all.
bluedaze* 48 minutes ago editdelete My husband's death certificate listed end stage dementia as cause of death.
mary75* 29 minutes ago editdelete My husband's doctor listed as cause of death 1. Some word that meant failure to thrive (he was 91 and had lost weight rapidly because he didn't eat) and 2. End stages of Dementia, probably Alzheimer's. I aske dhte doctor what should I put in the obit as cause of death and he said, "Old age."
Thank you for explaining it to me Dr. Josh. Does that mean he felt no pain? They said he just stood up in his chair like he always did and he looked pale so they called for help and brought him back to his room so they could get oxygen. They said he was already gone. They gave me a time of 10 minutes. I can't believe anything I hear, but when you said sometimes it just slows down and stops with no pain,I'm wondering if that was what happened. He did have two stents in his artery to the heart. They said something about high blood pressure, which I don't believe. Again I don't believe anything they say. Isn't the pulmonary part the lungs? Does that mean besides the heart he had pneumonia?
10 months ago he walked in the facility on his own at 170 lbs and passed away last week at 135 lbs. you said loss of weight could cause the problem with his heart and lungs. could that be what happened since he lost so much weight? He was on medication to help his appetite. They told me they were giving him double portions of his food also and he was eating almost 100 %. If that is so, why did he lose weight, and could that be the cause of cardiac pulmonary failure.
Hi Paula FIrst of all, there's no way to know for sure. Physician diagnosis of cause of death is notoriously inaccurate. Weight loss involves muscle weight or fat weight. Muscle weight can be lost (sarcopenia) despite adequate calorie intake because of underlying diseases (cancer and HIV are really good examples of this). But it happens in aging (normal aging) and dementia where despite adequate calorie intake there's muscle loss. We see this in patients with tube feeds. Muscles get weaker and thinner. Medications to gain weight don't help a person gain muscle mass. When a person loses more than 1 lb per week by dieting (at any age), a lot of the weight loss is muscle (unless the person is also doing resistance exercises).
When a frail person loses weight it is usually unintentional and they are usually not exercising with weights. A lot of that weight loss will be muscle. The body doesn't distinguish a whole lot between where you lose muscle. You tend to lose it where you have it. So the large muscle groups get affected such as back muscles, shoulders and thighs. But I have definitely had patients that lost muscle mass in their chest wall and have developed weakness in their breathing and my suspicion is that it also happens to the heart (it's a guess on my part). You can't lose that much weight and have the heart somehow magically unaffected.
Lungs can fail without pneumonia.
So my guess (it's only a guess) is that he probably passed out/became unconscious before he died. If he didn't seem to be in pain, he probably wasn't. I've sat by plenty of bedsides (including my own grandparents). My guess is that the nurses' blood pressure was high :). I've had several patients die this last week including one this morning. I have some young nurses in my NH and it stresses them out. Some of them are just out of school and it's up to me and the older nurses to go to the bedside with the younger nurses to help them understand what they are seeing. Anyway it sounds peaceful the way it was described. I think that's a blessing compared to how I see people pass away in ICU's or after a surgery etc. josh
Dr. Josh, Thank you so much for helping us on the site understand what is happening...and in plain English. My DH is in Stage 7, so as you answers the spouses that are ahead of me it helpls me understand what may happen to my DH.
Dr. Josh: Last night my husband began to rub my back and then it seemed he could not stop-a slow fairly large circle motion, enough to keep me awake for the next 3.5 hours! I pleaded with him to stop but he could or would not. At one point I moved to the bottom of the bed and watched as he then rubbed a pillow I had put between us. The motion went on and on, at that time I think he was asleep. What was that all about?
Hi Rhonda Jill I can't think of why off the top of my head. I'd have to ask one of the neurologists I work with (I wonder if they've noticed that I've started asking them a lot more questions recently!). The only think I can think of is that the outermost part of the brain doesn't as well as in AD and that controls conscious decisions. If it was during sleep, that is interesting. I'll get back to you. josh
DrJosh-what do you think of this: Hello everyone, my name in John Bainum, I run an organization in Florida called," FamiliesTo The Rescue." My profession is hypnotherapy & specalize in dementia / alzheimers. I feel for the people here caring for their love one, my heart goes out to you. It seems that lots of research that the Alzheimer's Association isn't made public that I wanted to tell you about. Dr. Daniel Nightingale http://www.dementiadoctor.co.uk/page_1785198.html , did research on dementia & all the people had great results. I hope to send this research to this site for everyone to view for themself. I just joined this site so hope to be able to help. John
It doesn't matter to me how a treatment works for dementia as long as it works. In other words, whether the solution comes from traditional medicine, alternative medicine, the US, UK or China it doesn't matter. If I'm convinced something will work I will strongly recommend it. If I think there's a hint it may work, I'll pass that info on for people to try.
On hypnosis and dementia there are zero research studies on pubmed. So does it work? I have no idea. Could this guy know something I don't? Of course. Every person I've ever met knows something I don't. But Daniel Nightingale has not published any studies.
It worries me that someone says that there are great results that doctors are trying to keep secret. It leans a little too much towards weird conspiracy theories. I take a pay cut to do what I do. No one is paying me off to hide anything (although I would consider it! just kidding). Having said that, there is publication bias towards alternative therapies.
It's one thing to have great results on an individual basis or in animal models. Lots of things seem promising early on, but once you look at it closely with an IRB reviewed study that is rigorously designed, lots of things fall apart. If he has done the work to get research approved and then accomplished, he should publish it. Even if he hasn't he could publish care reports.
What exactly is he promising as benefits? Improved function or cognition? Less psychiatric symptoms? Delayed placement to nursing home? What are his harms? Psychosis? Worsening cognition? What proportion of people achieve the benefit and harms?
Current treatments are so poor, I'd be willing to give hypnosis a try. Why not? I can't imagine the harms would be all that much. It may be expensive, but so are branded medications. No drug interactions, it wouldn't preclude you from pursuing traditional therapies at the same time.
But it's one thing to say, "I have an idea, let's give it a try" to "I have research to show this works that is being kept secret." Saying something works is a scientific question that is either true or false (or unknown I suppose). I'll be happy to review any data-even for my own curiosity.
When I see someone over promise, or fail to communicate any humility about the challenge of treating dementia (risks, limitations of benefits, challenge of figuring out if a treatment is working, proportion of people who achieve the benefit), it makes me think they are trying to get famous, rich or powerful. This is true inside academia as well as outside of it. some of these guys may be convinced that what they are doing is amazing and there is nothing deceptive about them, but then they still need to do the proper research studies to answer some questions.
Yes, Josh-as usual you make a lot of sense. I am an RN who loves alternative therapy with a scientific backing. My daughter is a memory care specialist (multiple degrees and certifications) and she has found aroma therapy works well on some folks. As for the above gentleman-he might be more convincing if his grammar was better.
Dr. Josh, I may be out of line but I told him to post his "research" on the alz.org forum boards because that would be a better forum - we are dedicated to caring for spouses/partners. and if it truly is something to be considered, we would find it there. I have a comment, but I will restrain myself.