I need to talk to you folks. Things have been going kind of down hill around here. I noticed Thursday he couldn't count his cards. Had a terrible time following the game. In fact, we all had to tell him every play.
I made a pizza for dinner. He commented that the waffle was good. I was a bit surprised but it was round. So I asked him what he'd said. He couldn't repeat it. He ended up asking what it was.
Today, one of the workers here asked him where he'd met me. We'd been talking about that just a week ago. He told the worker he couldn't remember where he met me. Didn't have any idea how long we've been married (59 years) and thought he had five children. He remembers our first-born was a girl. Also, he remembers we had twins.
And then, to top it all off, he stood in the living room and told our workers of all the work he'd done in the living room and kitchen the new cabinets, etc. He didn't do any of it. In fact, he sat all day long in his chair and wouldn't even move.
I'm so glad the work is all done and things are put back together. This will give me time to minister to DH. I believe he is going to need more care and I'm rather sad about this decline. I was really hoping it would be slower than this.
Mawzy, things are similar here, kind of scary how fast you can watch it happen. I don't know if it's the moon, weather, or what ever else could be disturbing him lately. I just know it seems to be progressing fast the last few weeks. Hang in there, that's all we can do. Rk
Mawzy, let's hope that, now that the remodeling work is coming to an end, your DH will settle back into a routine and show some improvement. I'm keeping a good thought for you.
Mawzy, It's just so sad when the man who used to know you better than anyone else no longer knows the important details of your life together. My husband seems to be moving more quickly into stage 6. Many years ago, he was talkative and very entertaining. People were drawn to him. He still thinks that what he says is interesting, but almost all of it is confabulation. He answers questions that have not been asked.
It has been more than 6 years that I’ve been d.e.v.a.s.t.a.t.e.d.* by the changes in his life -- and in mine. * dazed emotional vulnerable anxious shattered torn angry terrified exasperated drained
It comes and goes, Mawzy. As folly said, now that the renovation's done, he may settle down. Also - have you changed any meds in the last month or so? Right at the beginning of the year we were almost out of neurontin and ordering it before then would have popped him into the donut hole. So I held off and started giving hiim one pill a day instead of two. He'd originally taken them for sundowning and antagonistic behavior (not real aggression, just refusals to do things, etc). When the new pills came I decided to wait a little and see if he needed the second one added back in. Now he's noticeably more confused SOME of the time but I'm going to wait and let behavior average out over a week or two before we go back to the two. (originally the neuro had prescribed one but said up it when you think you need to)
I can't imagine my husband being able to even pretend to play cards, though!
My DH asks me at least once a day how me met. last week we had friends over and he suddenly asked them how he knew them. Our friends know what the deal is, so they just told him and the conversation when on, but it is tough. yes they go fast, even though the doctor we went to last week mentioned that the "kindness" of the disease is that it goes slowly, so we can get acclimated to it, it sometimes go pretty fast.
Sometimes they remain in the 'plateau' periods where things are more constant and they seem to thrive for long periods of time without decline. then at some point,if they do begin to move on to another loss it becomes much more noticeabe-sorry mawzy you have seen a decline. Divvi
I, for one, certainly don't feel that the slowness of the disease is a "kindness." My first husband died only six months after a cancer diagnosis. As devastating as that was, this long, slow death of AD is so much worse. It kills the relationship, your personal life, your sense of control and your finances. If there were hope, I would feel differently. But now I just pray for a quick death. God help me.
Ya know, anymore I don't even want to try new stuff until "someone else" proves it works to reverse the disease. I DO NOT want DH to "plateau" where he's at now. It would only prolong the misery for DH and our family. If I could have stopped the disease in its tracks around stage 3-4 then may be I would have tried whatever was offered. But to stop DH's disease now, and at best get him back to a stage 5? NO WAY!!!!
we have discussed this before NR. plateauing them in a place they are now without reversal would be sadistic to everyone concerned. i wouldnt want to give meds to keep him where he is either without a real down and out complete recovery. divvi
When Bill's doctor extolled the meds to keep the disease from progressing I thought he was out of his mind. Who wants a prolonged existence in purgatory.
My husband too is going down hill quickly. I tried stopping the Namenda a couple of weeks ago but his behavior became so erratic, I quickly put him back on it. I am certainly not trying to stop the disease, like most of you, I would just like to see it over with but in the meantime I have to keep him and myself safe. He is still pretty erratic and confused but at least he has calmed down enough that I am not afraid that he will harm himself or me.
Interesting that this is the way my thoughts have been running lately, also. To prolong this and stay at this particular point in the process would be agony for both of us.
We went to G's cardio Doc yesterday..terrific guy..after chatting a bit, he decided to cut his blood pressure med in half to see if that would help his energy level..then asked me how I felt about his continuing on his statins. His FIL had dementia, so he knows what's happening. I'm sure I recall the statin issue being mentioned here earlier. He felt it was a toss up, but if I wanted to stop them at this point, he'd agree. For now, he's going to stay on them. His PCP doubled his prozac dose, but we haven't received the meds yet..just trotting along.
About 3 months ago my wife's PCP and I agreed to stop her statins. We are continuing her meds for BP and diabetes, in addition to Exelon Patch and Namenda. I certainly agree that I would not want to do anything that would prolong her life in the end stages of this disease. She is currently stage 6.
Thanks Marsh, I truly don't know what stage G is..he's mid range? Is that a term? Totally self sufficient and driving locally, but roller coasters otherwise. I wouldn't want to chance a stroke and add that to the mix. Just not sure.
My husband is not on statins or bp meds but if he were I would not discontinue until he gets worse. He is stage 5-6. Not self-suffecient, doesn't drive, needs help putting on his t-shirt but manages his pants and ties his shoes. Brushes his teeth, showers himself, bathroom unassisted, shaves himself. That is ALL he does every day. No work. Sometimes he will fill our water glasses and set out plates with reminder of each. I credit some of the things he does to the oil I am giving him. He is on Aricept, namenda, neurotin, wellbutrin and xanax.
I fix his meds and set them out for him = each dosage. If I set the whole days out at once, he would take them all.
Dick is on exelon, Lipitor and Diovan, plus zoloft and a baby asperin. We just started on Resveratrol in a trial and he's having a hard time drinking it, even in 8 ounces of grape juise. It's only been about 1 week, and I'm wondering, do I want to torture him with this stuff, especially since it could actually be a placebo, and even if it's the real drug what? I'm totally not knowing what to do. I'm thinking though, since he's still functioning on some level, toileting at least, Oh, I don't know, and I don't want to have to decide. i don't want this problem. I was crying last night, he sleeps all the time, what good is it. Well, we're going to florida for 2 weeks, with some friends, I'll have to see how he does, but I definately see a downward trend.
Chris, so sorry about your DH. Hope your FL trip goes well for you. My DH has not declined hardly at all since DX's in 2003. Still functions pretty well with everything, except very short term memory - and traveling - no traveling for us. At his age (85) I don't think I would give him anything that might "prolong" this journey.
Since all the current and available medications, for now and the foreseeable future, are ones which only *slow* the progress of AZ/Dementia .......... there are none which cure the disease or repair the damage the disease causes, I've often wondered why we even use medications to *slow* the progress and question whether or not this is cruel and unusual punishment of someone who finds themselves trapped in a body and mind which have decided to take this horrific journey into the Alzheimer Abyss ?
Are we really care givers? Maybe we should really consider that if we really did *care* we wouldn't subject our LOs to extending the length of time they have to suffer the cruelties and indignities of this disease ............ I really, in my heart of hearts, do not believe my husband enjoys having to wear Depends because of being incontinent, I don’t believe he really likes to have to be dressed/undressed, nor does he enjoy having to wear a bib because he is no longer able to get food from his plate into his mouth without spilling it down the front of him and I truly don’t believe he likes having to have his teeth cleaned for him or extraneous food picked out of his teeth for him as he is unable to do these things for himself plus many, many others .......... do AZ patients who take these *slowing down the progress* medications really enjoy living in this state or would it be kinder and gentler to not medicate and let them go quicker? AZ medications don't relieve pain or allow joints to move more freely .......... just what do they do ....... except prolong the inevitable ...........as *care givers* are we really doing all this selfishly, for ourselves, because we do not want to suffer the loss of our LOs? ....... ummmmmm, just pondering today
Good Question..I think when they get to the points you illustrate above it is time for Hospice and comfort care. I understand the meds (aricept, namenda) keep them in a more productive state and lower stage instead of being in late stage so long. Others can express this better than I can. I know my husband would not want it to continue.
I believe it's DEFINITELY worthwhile to try to slow the progress of the disease in the earlier stages. Frances was started on Aricept about six years ago and Namenda was added about a year later, and to whatever extent they contributed to the slow progress of her disease for about five years up until about a year ago, they were definitely worthwhile for us. We enjoyed a pretty good life quality during those early years -- definitely "keepers". At the point we're at now, however, her (and our) life quality isn't all that good, and I don't think I or she would want to prolong it unneccessarily. I'll probably discuss taking her off the meds when we see her neurologist a couple of months from now-- maybe suggesting that he start her on something for delusions and emotions instead -- she's increasingly obsessing about her bladder and tending to get weepy sometimes about her condition now.
Aricept and Nemenda don't prolong life. If you're lucky they do what they did for GC's wife. If they give you a few more good years it's a gift. Didn't work for us with FTD
We were at the neurologist the other day with issues of combativeness and delusions/hallucinations. She has been on an atypical anti-psychotic for these behaviors. Additionally, I asked how long Namenda and Aricept are effective. He was very candid in stating that there is now considerable evidence that Namenda is not as effective as originally thought (it may not be doing much of anything).
My husband was on a statin last summer for cholesterol of 220. By the third day he couldn't remember who he had even spent the working with all day. I researched that night and found that it is a known side effect in about 10% of the cases. The next morning we threw the rest of the bottle away. I talked to my naturopath and she recommends Red Yeast Rice - does the same as statins without the side effects except maybe joint pains. His cholesterol has come down.
If I were diagnosed with this horrible disease, I would not even take medications to slow it. I am ready to go on to my maker. When I read here what the future holds, I would not wish that on anyone.
It is my husband's choice to take the galantamine - but he is the type he would not consider not taking it. But, if he progresses from MCI to Alzheimer there will definitely be a time to stop them. I guess I fear he will hold on like his dad - 20 years or so now. His mother would refuse any help and died of a massive heart attack. 20 years from now and I would be past the age to enjoy what is left of life.
My husband improved dramatically when he was started on Namenda only. It has kept him fairly stable for three and a half years, now. And I haven't seen any study that shows it doesn't work as well as originally thought -- quite the reverse. The recent studies I've seen show that it works, on average, for at least five or six years (as long as the studies lasted.)
Recent studies have also shown that Namenda and the cholinesterase inhibitors can help prevent the development of behavioral symptoms such as rage and aggression.
Namenda was originally tested, and approved, for treating moderate to severe AD. It was later tested for treating mild AD, and was not particularly effective for that stage. That may be what the doctor was thinking about.
Bar-Bra asked why we would want our LOs to plateau with this disease. Well, my husband is on a plateau. Every once in a while he has an off day or two where he can't find the materials with which to make his breakfast, but then he gets better again and we are back to his current "normal".
I wouldn't mind his staying at this stage for as long as possible. Our current understanding is that the dementia drugs do not extend life, they just make the symptoms slow down for a while. At the present time, he can make his own breakfast, cut up his own food and eat it on his own, get to the bathroom night or day, take showers on his own. He isn't going through a depressed stage and if he has a bad moment it is basically a mean spirited remark, not violence.
I would much rather have the man I married. I would much rather have the man I retired with. But since I can't have that, I would much rather have this person living with me than one who is wearing diapers and needs to be spoon fed. The drugs give me this person, and that is why he is on them right now.
I'm not taking DW off of anything, nor am I advocating that anyone doubt the prescribing advice of their spouses's doctor. Our motto should be: "Whatever Works!" However, I did come upon this article. (I have also been to a medical lecture in the last 3 months by a very well respected neurologist where he included a slide showing the effectiveness of Aricept vs. placebo - no difference after three years of therapy.) Am I missing something on Namenda?
Namenda(R) Slows Severe Alzheimer's Symptoms For One Year, Follow-up Study Shows 10 Jan 2006
A drug used to treat symptoms of moderate to severe Alzheimer's disease appears to be effective for one year, according to the results of a new multicenter study that provides additional support for the continuing effectiveness of the treatment, called Namenda(R), for patients in the later stages of the disease.
"This study demonstrates that it is possible to alleviate some of the cognitive and functional losses associated with the later stages of Alzheimer's, providing a basis for greater optimism on the part of caregivers," says Barry Reisberg, M.D., Professor of Psychiatry at NYU School of Medicine, the lead investigator of the study, which is published in the January 2006 issue of the Archives of Neurology.
"Our study verifies that this medication continues to be beneficial and is safe with remarkably few side effects," said Dr. Reisberg, who is also Clinical Director of the Silberstein Aging and Dementia Research Center at NYU School of Medicine.
Namenda(R) was approved in October 2003 by the Food and Drug Administration for the treatment of moderate to severe Alzheimer's disease. The approval was based partly on a rigorous 28-week study of 252 people who were randomly chosen to receive the drug or a placebo. The results, published in the prestigious New England Journal of Medicine in the spring of 2003, showed that the drug could slow the downward spiral of the disease. Dr. Reisberg also was the principal investigator of this study.
The new study evaluated the effects of the medication in the same patients for an additional 24 weeks in what is called an "open label extension." All patients who received a placebo previously were given the drug. The study enrolled 175 patients, 80 of whom had received the placebo. The remaining patients continued to receive the drug. The study was paid for by the German company Merz Pharmaceutical GmbH, which markets the medicine in Germany and elsewhere. Forest Pharmaceuticals Inc sells Namenda(R) in the United States.
All patients were evaluated with a wide range of tests to assess cognitive and functional abilities, and behavior. Those who were switched from the placebo to Namenda(R) showed a significantly slower rate of decline in a test of their ability to perform daily activities and in a test designed to measure their cognition, compared with the rate of decline previously. They also showed a significant benefit on a test designed to evaluate overall abilities and behavior that includes input from caregivers.
In the patients who continued to receive Namenda(R), the benefits of the treatment appeared to be maintained, according to the study.
Namenda(R) is the only approved treatment for slowing the later stages of the disease, when patients are in the most distress. In the moderate to severe stages, patients begin to lose the ability to care for themselves. They generally have trouble dressing and bathing; many can no longer make a cup or coffee or tea for themselves.
The authors of the study are: Dr. Reisberg and Steven Ferris, Ph.D., from NYU School of Medicine; Rachelle Doody, M.D. Ph.D., from Baylor College of Medicine; Frederick Schmitt, Ph.D., from the University of Kentucky; and Albrecht Stoffler, M.D., and Hans Jorg Mibius, M.D., Ph.D., from Merz Pharmaceuticals.
Pamela McDonnell pamela.mcdonnell@nyumc.org New York University Medical Center and School of Medicine www.med.nyu.edu
(1) They had a half-year double blind study which showed that Namenda worked well on patients with moderate to severe AD.
(2) Then they moved into another half-year, open-label study, which "also showed a significant benefit" from the drug, both for the people who were on the drug the whole time (the first half-year plus the second half-year), and for the people who had been on placebo originally but were then put on Namenda.
So it was a one-year study, patients with moderate to severe AD, and the drug did well.
The study didn't last any longer than one year, so they did not draw any conclusions as to how much longer than one year Namenda might be effective in this particular study.
It doesn't say it ONLY works for one year and then stops working. The authors drew only the conclusions that could be drawn from the experiments that were done.
If you want to look at how well Namenda does over longer time periods, you need to look at studies that evaluated efficacy over longer time periods.
When I first noticed symptomes, and before he was officially dx'd I asked our PCP for Aricept. he gave it to us. It was a fairly new drug at that time. Then I thought, aftera few months that he probably didn't need it, and it was my imagination, so we stopped it. Wow, what a change, he went downhill like a brick. You could really see the difference. I am still angry with our PCP for not warning me, as is stated now on the package, that once you start on Arecept you should not stop it because any improvement will disappear, and they will return to where they would have been had they not been treated. I know, many are saying that when they stopped the drugs, they're loved ones got better. Well, that 's a chance i'm afraid to take after my first experience. Although he has been going downhill, he's still functioning. In other words he goes to the bathroom alone, and eats. I remind him to shower, and check to make sure he's actually under the water, and I help him shave. I know it's going to get worse, but he is still enjoying life, he plays with the grandies, and they love him. He has some sort of conversation with friends who are patient, and we are going on vacation. Who knows, this might be the last time.
chris, our husbands are at very similar stages. Although I'm not there when he takes a shower I know he got wet because the towel is wet afterwards. I know he used the sponge because it isn't where I stick it afterwards. I put soap on the sponge when I take my shower after his so I know there was soap on the sponge when he takes his next one.
He can, and does shave on his own, even on non shower days. He walks pretty well, and is still taking long walks without me. But he is avoiding them now because we have snow on the ground and we don't have sidewalks available.
He does need to be reminded to shower, but the most I get is a desire to wait a bit before doing it. I'm not having a fight with him over it.
We do have some problems when our grandson is around. Sometimes the two of them fight. But we are dealing with it, and the two of them love each other so much we try to get them together, weather permitting, every few weeks.
My DH is in about the same condition as Starling's and Chris r's. I remind him to take a shower and he says he already took one. Same thing with changing his underwear. I have to keep on him about this. However, you know, he never forgets to brush his teeth and he does a very thorough job. Strange disease.