Jane, this is just the situation we are dealing with. My husband has been at Stage 7 for over four years, completely bedridden and unable to move or communicate..or actually anything. He has spent all this time eating, sleeping, pooping and peeing. Just in the last month he has contracted pneumonia and we decided not to treat. Hospice has been on board and we are just providing comfort care at this time. He continues to linger because that is just his fighting nature. It is a strange feeling to walk into his bedroom and wondering if he is still breathing. But, that being said, I would never save him for more of the same. I think suffering from this disease for 11 years is more than enough.

Everyone must make their own decision about this or a similar situation. My feeling has always been "what would I want done for me?" I know that my husband would never want to live in this condition and it makes my decision much easier.

I agree with Sandi When my husband gets to that point we will only keep him comfortable.That is what he reguested when he was diagnosed and he Had it drawn up in his papers for power of attorney for health care.

I have decided to make the same decision, but I reserve the right to modify or change that position when the time comes.

dave

As I mentioned on several posts, my DH, who is being treated for high BP, cholesterol, heart disease , frequently becomes verbally and on occasion physically abusive with me. THe neurologist does not want to give him medications, which are normally used to treat bipolar disorder, as they tend to increase the risk of stroke and heart attack in seniors with dementia. I googled zxprex,respiridal/ respiridone and was surprised to find that they do not recommend these med for seniors with AD.Yet they seem to be ones most prescribed.

I don't recall any post where people said that they would treat an AD patient with medicines that would cause the disease to last. Of course, I am a relative newbie here, maybe I missed it.

But I do recall posts, either here or on the alz org website (maybe both), where there was considerable confusion over whether AD meds such as aricept and namenda prolong the misery, or can actually be considered to be "comfort measures." I think there is quite a bit of misunderstanding as to what these drugs can do. They do not prolong life; instead, for many patients, they can help delay the onset of the worst side effects, sometimes to the point that the patient passes on before they ever develop.

I agree with Joan, waiting for stage 7 is not only unnecessary, but unwise, to think about these issues and discuss them with our ADLOs while they can still participate.

I have known a few people who opted for extreme measures, even after a LO was near end-of-life (several different diseases, including cancer), but in my experience, that's the exception, not the rule. And I think possibly their decisions came from ignorance -- believing that the extreme measures were actually providing comfort. Many people find it hard to believe that "starvation" is a natural and gentle way to go, for example, and think a feeding tube improves quality of life.

So I think we all need to educate ourselves as much as possible.

Hard Choices for Loving People is a very helpful booklet, and available for free at www.hardchoices.com.

Another website that was just posted on the alz org site and, at first blush, appears to be very helpful is:

http://www.thirteen.org/onourownterms/

Imohr, let us know if the Tramadol HCL works for his pain. I will really be interested to hear whether or not it makes his confusion worse. That's what I'm trying to avoid. About 6 month's ago DH had a facet joint injection. This did help a LOT. It's another form of epidural with cortisone but is given right in the joint where the stenosis is. We're going to try to schedule another one of those as soon as possible. We have a doctor in our orthropeidic office whose speciality is non invasive pain relief. He tried Lyrcia medication which didn't help and then did this procedure which helped more than anything else.

Kathi, this is my own experience and i was one who totally believed that keeping DH on every AD med was the way to go, but since Jan this yr i had to stop the namenda- (as did razadyne and yrs prior the aricept due to reactions)DH was having strange reactions so neuro said there comes a point where none of the drugs may help any longer. so we took DH off namenda and i was shocked the difference in some aspects. now i dont say it came without consequences. my DH is stage 6 and his speech abilility and writing/reading did decrease but he can understand and does speak just mostly stuff only he understands. but the bathing issues/aggitation/dazed look/inability to follow a command/continence returned to a level, at least he does go on his own if guided to bathroom//so there was a huge tradeoff -i probably would have chosen to stop the drug earlier if i had seen he could function this way without it. some may not see this as a choice and should probably remain on the drugs if no physical reactions occur til the latter stages -
my DH is calm and smiles alot and i dont have to give any meds for aggitation at this point. i am overjoyed. i say this as some may have issues with these meds and keeping them on them at any cost may need rethinking. if your DH is better without it, maybe try for a while and see if there is more decline. hope you find what works for you-divvi

kathi-don't know what meds your husband is on. My husband also has FTD. He did well on Seroquel for about a year until he totally crashed-but we did have that year. AD drugs did nothing.

Judy, you should call his dr if you can, as some of the meds shouldnt be just stopped cold turkey, they can produce ugly side effects. and the AD meds usually are started up again with min doses and gradually increased =best would be to ask his dr what to do in this case. as for the blood pressure, thats a different discussion, that could be disastrous if the BP goes up. could lead to cardiac or stroke..please get ahold of his dr and let them know hes not taking the meds as ordered and get their input as what to do. this is just me, but i probably would get it down by my own strategy of using pudding or yougurt and get it down without him knowing.. i dont know if you could try that. divvi

Look, the pills aren't a CURE. They alleviate symptoms. If they don't do that, don't feel guilty about not giving them to him!! Just, as they've said, do the weaning carefully.

Thenneck, it is so much harder when they do that. Even though you know they don't mean it, it still hurts.

Didn't want to get into that as I covered it on another post.
Wife's level of functioning is so bad and deteriorating rapidly. I figured after a year on the meds they clearly aren't
helping. Maybe with her fragile physical state the meds were actually hurting her. Worth a try. Thenneck

I was under the impression that Aricept, Exelon and Namenda all delayed the progress of ALZ. Yesterday, the neuro told me that they don't but that they treat the symptoms?

He is recommending adding Aricept to the current dose of Namenda. I have noticed B. seems more confused with the Namenda (he has been taking it for a few months, was on Exelon before that, Aricept prior to that) And although he is more confused, he seems more aware that he IS confused. Hmmmm.....

So we will try the combo. Neuro said give it a couple months to see any effects.

This is a big responsibility isn't it!

When Aricept was started (2005) I was told by the psychologist that the medication would 'work' for aproximately 2 years. I don't know if she based this on research or her experience with patients who were taking it. At that time, DH was 65. She had conducted the testing that indicated that he had MCI 4 years earlier. I suppose we are going to find out if the Aricept has been effective or not.

Right now there are several studies being conducted as to whether or not there is any good being derived over different time periods for each of the Alzheimer's medications. I have been researching some of the findings, due to physicians' disagreements as to whether the Aricept/Namenda and Razadyne/Namenda are helping our spouses maintain some of their abilities (feeding, dressing, etc.) longer than they would without them, while still continuing the downward spiral. Some spouses (spice) have adverse reactions to one or more of the medications and some develop worse symptoms by taking them. Each drug is truly a hit or miss proposition, based upon what each of us has been saying here for over a year now, and some spice have been on these drugs for several years. Some have not been on them at all. (If you have seen one case of AD, you have seen one case of AD.)

I have been noting the medications used for anxiety, for rages, and for us for future use, if necessary, as well. I depend on all of you to continue to inform us here as to what works, and what doesn't. I think we make a difference even to those who don't post here.

I found this article to share. Let me know what you think:

http://www.sciencedaily.com/releases/2008/09/080922122510.htm

Mary,

Re the article (thank you!), I've seen far too many physicians who think a drug only works for six months just because that's the length of a clinical trial. And they turn around and tell that to their patients ... disgraceful. (My husband's neuro tried to tell us that namenda isn't effective, and gave me a paper to "prove" it ... the paper was on cholinesterase inhibitors, and never mentioned namenda at all.) I recently saw a quote from some high mucky-muck at NIH saying the drugs only work for eighteen months, so if you are diagnosed at an early stage, you face a terrible decision of when to start the drugs -- now, when you're doing pretty well, or later on, to slow down the development of severe symptoms. Beyond disgraceful.

You don't know how long a drug will continue working until a properly-designed study -- one that lasts for years -- has been conducted.

There is too much variability in the course of the disease in an individual patient to tell whether the meds are helping that particular patient. However, the large number of patients who have been on the meds for years and go into a steep decline when taken off of them, tends to indicate that the meds were indeed still working in those patients.

I am deeply pleased that there are now results from a "long term" (2.5 years) study that can be used to confirm long-term use is indeed helpful.

It is interesting (and not particularly surprising) that the data indicate that there may be benefits that are not necessarily obvious, since there is no way to know how rapidly a patient would have declined otherwise. So I would think it prudent to administer the meds as long as the patient does not develop serious side effects.

It makes sense that a cholinesterase inhibitor and namenda in combination would work better than either drug alone, since they work by very different methods. Short-term clinical trials have shown that the combination is superior. Now a long-term trial confirms the combination keeps working better.

So far, so good.

However! Either the researchers are getting a little overly enthusiastic, or the reporter is stretching what they said, perhaps both. (It happens...) Not every patient responds well to a cholinesterase inhibitor, or to namenda. The fact that some patients do develop serious side effects while others don't should be enough to tell us that it is very unwise to try to make a prediction across the board.

And using a statistical model to predict probable outcomes for a year and a half beyond the end of the trial? What godlike person developed the model??? As far as I know, we can't predict *anything* about this disease. The longitudinal study, which has been going on for years at research centers throughout the country, is trying to find clues that can be used to predict progression -- signs that the decline will be rapid, or hints as to which symptoms will be developed -- and to my knowledge, they're not there yet.

And the senior author of the paper is showing his ignorance when he says cholinesterase inhibitors are approved for use in mild to moderate dementia -- aricept has now been approved for severe dementia, as well. And namenda was approved for moderate to severe, not just severe.

Yes, it is the same neuro..and quite frankly, I felt a bit of a "smooze" from him...make the call, say what she wants to hear, and adios. Perhaps I am reading too much into what I heard..better face to face, but regardless, G is better right now, so we're back to one day at a time.

http://memory.ucsf.edu/Education/Treatment/medications.html

I thought this was a good resource list of dementia drugs with comments from UCSF. Also, they are recruiting for a FTD clinical study for namenda.

While at Mayo for my wife's diagnosis, I asked the Neuro about quite a number of drugs I had read about. As would be expected, he was aware of all of them and explained patiently and professionaly. He then told me that all of the AZ drugs available are only effective at slowing progression in the earliest stages of some Alzheimers patients. He then told me that it would do no good to put my wife on any of them as she was so far advanced. Gotta appreciate honesty.
Like everone else here, I didn't think I had anything to lose by trying so wife has been on a combination of Aricept and Namenda well over a year and her condition has just deteriated faster and faster. There is no way of knowing if it might have gone faster NOT being on these drugs.
Looking back on how long it took to get a Dr. to listen and pay attention to my wife's condition, I've spent countless hours wondering how a person goes about getting diagnosed in early stage AZ. Not going to happen around here.
Thenneck

I'm beginning to think that EVERYBODY needs to take the mini-mental, starting at age 35 (which would provide a baseline), possibly every 5 years until they are 50 and every 2 years thereafter.

I'm beginning to think that if you go to the doctor talking about memory problems, and they don't automatically give you the extended mini-mental, or a referral to someone who can spot real memory problems, you aren't getting the best care you could have. My husband didn't get the mini-mental, but he did get a referral to a cognitive therapist who understood what she was looking at.

Frankly just about any medical assistant (and they don't get nurses training at that level) could be taught to give a mini-mental screening with a few hours of training. Not that they would interpret it. Just that they could give it and turn the results over to someone else to interpret it.

I mean really, if you don't know what year it is you've got some really big problems. And that happens pretty early in this disease and they manage to hide it until they are much further along. If we really want early diagnoses, that is how you get it. But truly, do we really want to know in stage 3?

I store out organizers in different places. I can see his from where I sit at the table. Mine is on the table. So yes, I know how easy it would be to be on auto-pilot.

Like Imohr, I use a lot of visual clues and physical clues to keep that kind of thing from happening. It is unlikely that I'd take his pills because of the size of them. I couldn't manage half of them because of size. But yes, he could take mine, and at some point I'm going to have to deal with that as well.

Right now, what I am doing is working. I've already thought about what to do when I need to begin to hide and/or lock things up. I've already thought about what to do when I need to hand him one morning's pills every morning. When the time comes that he can't take the pills I'll need to figure that out too, but that might be when I stop giving him certain meds and call in hospice.

Thanks, Imohr. I'm going to ask DH's doctor about Tramadol. It may be addictive but maybe not so much as hydrocodone. Marsh, can you comment on this? I think Sandi D is away right now.

phranque - As I understand the situation the meds are mainly to keep the patient manageable and comfortable on the progression of the disease. Similar to other diseases. We know AD is incurable but some of the meds keep them in a more comfortable area for a longer length of time. After a certain point this doesn't happen and meds are sometime taken away and the final stage is shorter.

We notice a lot of changes in dh when we remove or change meds. Not all good, in fact most are bad. We, as caregivers have to decide the best way to go.

I don't think anyone in their right mind would prefer to go through the final stage of being more or less in a vegetive state. However, just like cancer, als and other incurable diseases it is the hand we are dealt. Some of cancers are now curable and I am looking forward to the day AD and other dementias are cure-able.