I took my husband to his GP to get a new referral to a neurologist that specializes in Alzheimer’s disease. The doctor suggested that my husband get a colonoscopy. Granted he is in the early stages but is this really necessary? I told the doctor unless it’s a life or death situation he is not to be administered anesthesia. I was then told not to worry they would only give he a mild sedative. I have several concerns here. First will this add to his confusion or contribute to his decline? Second what do we do if it’s cancer- he does not have any in his immediate family? Lastly it’s going to cost us about $700.00 out of pocket – currently our money situation is tight until we get disability. I have lots of dental work that needs to be done but I have to hold off for a while. Your thoughts would be appreciated.
Sid had a colonoscopy last year - they put him out completely, and he was fine. The other alternative is what your doctor said - a mild sedative - kind of twilight state.
I would ask the doctor if it's absolutely necessary right now, or if it can wait until the money situation is better OR you could ask about a payment plan.
You said your husband is in the early stages, so he probably will not be overly confused, and I doubt that it would contribute to any decline.
Did you get the referral to an AD neurologist that you wanted? If so, you could ask for his opinion.
Trish, does your doctor send you for an occult fecal blood test? I'm not sure if that's the right name- smears are taken from stool on three consecutive days and analyzed for the presence of occult blood. My thought would be to ask for that first and if it is negative, you might delay a colonoscopy. We are fortunate in that this test, done in hospitals, is fully covered by our provincial health plan. Our doctor has never suggested my husband has it.
Trish, my husband had severe pains in the colon area so he had to have a colonoscopy about a year ago. They put him out and he did not have any ill effects from it or did it cause any more confusion than normal and there is no way of knowing if it affected his decline but I would not think it did.
Trish, My husband has not had a colonoscopy. Our Doctor says it would be a hard thing for him to get through, especially the Prep. Why does the Doctor feel a colonoscopy is necessary? is it routine?? If routine then I would opt out of it. I would not put and AD person through routine tests such as this. If he has a problem then that would be a different story. If this is strictly routine do not put him through it.
The topic raises interesting questions about other health care issues as well. Skipping invasive or frightening tests which might be traumatic to the AD person seems like a choice you can make without getting too hung up on the ethics. What about medications for conditions such as high bp or cholesterol? Or a hundred other things. I'm wondering if there's a point at which I might question whether trying to maximize life-expectancy through the maintenance of these small physical health issues is a worthwhile endeavor... Certainly it is for now, in our case. Not very many people would wish to be in this type of decision making position.
Emily This is a topic I am sure most of us have wondered about. Things such as cholesterol, High bp and other preventive measures are things that probably should be treated. Not such things as a routine colonoscopy and invasive medical procedures which are routine. I would feel very bad to think I did not treat High Blood Pressure for Jim and would treat it for myself, especially since all it takes is a pill, not invasive at all. It is really a hard thing to have to make a decision for someone other than yourself. I would tell myself that if I had the disease and had cancer then I would not want someone to put me through the treatments only to prolong my life for something much worse. It is so hard to think about these things but we may be faced with it and need to think ahead.
We have been in discussion in our family about these very things. No invasive stuff. Then there is the fact that Larry is still with it in somestuff and one thng he put his foot down too here a while back was flomax. He said for crap sake I take so many meds now and half make me puke and I take a pill for that I am not taking another one so I dont pee so much...
My husband's general physician recommended a cholesterol lowering medication but his holistic doctor was opposed to it. The GP said it was up to us, of course, and he mentioned the term "benign neglect". Interesting term, don't you think?
What do you think your GP was trying to say? That you would be medically neglecting your husband if you chose not to take cholesterol medication? I've never heard that term before. What do others out there think?
If that is medical neglect, then I am guilty. I have taken my husband off many of his meds and I have quit worrying about his cholesterol. What are we keeping them alive for, late stage? I sometimes think it would be kinder for his heart to take him. I thought because he had sever heart problem he would not go to end stage. Maybe taking him off all the meds his heart has gotten stronger. I am seeing late and end stage just around the corner. I want to take care of him as long as can, but I am starting to look at nursing homes and planning for what is not too far off. It sucks.
Jayne, I am a night time, tea or wine, and computer reader too. It is the only time I can stay more than 5 mins. Why if I am in the same small home is that not enough.
This is very interesting to me right now. My husband is on colesterol and blood pressure meds. His blood pressure is way down and not sure about the colesterol. His doctor told me to take him off Resperdal, but leave him on Namenda. He is in stage 6 now, but not sure about taking him off the AD med. A little scary. She also told me to look for a home for him. He was not sleeping and therefore I was not sleeping. The last couple of weeks, he has been sleeping quite good and not sundowning at night. Go figure, a small adjustment of meds must have helped. I am still looking for a home, but not anxious to pursue placing him right now, but that could change. The home that I was so impressed with has a six month waiting list, so may wait for an opening there. But thangs can change.
He will not go to bed unless I do, so my late night reading, etc is no longer available. I miss the quiet time by myself.
Jayne, I believe what the GP was saying is that not giving him the cholesterol lowering med could be considered neglect but in our case the outcome would be benign. In the long run, as others have mentioned, what purpose would it serve except to prolong the end stage?
Tonight I’ve been rereading all the posts I can find about dangers of anesthesia. I took DH to the doctor today, and he told us that he thinks DH has cancer of the bladder. DH and I were able to talk about this, and we both think he should proceed with the test where they will do biopsies to see exactly what we are dealing with—but they have to put him to sleep, and I am afraid of what the decline will be after that. We are both against extreme interventions, but DH is already in quite a bit of pain from this. The doctor seems fairly optimistic that they can treat this and he will do well. If it is possible for him to have a cure for this, I think we have to pursue it as much as possible. I do not know what we will do if the disease is farther along than we think.
I am just so glad that this happened while DH could talk about what is happening to him. Our family doctor treated him with two courses of antibiotic for a UTI, and he just got worse. I know normally doctors don’t routinely test for blood in cases like that, but ours did, and wanted us to get follow-up care immediately. But I wonder what would have happened if DH had been farther along, maybe in a nursing home, and not able to tell them that he was still in pain. They would probably just test for infection, and then think nothing was wrong, and leave him suffering.
It is so hard to have the responsibility for another person’s life, especially when health issues multiply. I’ve always thought that at the end of this journey, I will—then—be able to look back on everything and see exactly what I should have done at every step in the road. But right now it’s pretty challenging.
If anybody has any ideas on anesthesia in addition to what’s already been posted, I would really appreciate hearing them. Thank you.
My husband had to have an emergency colonoscopy due to bleeding. He did not have any problems with the IV sedation. Different people respond obviously in different ways to anesthesia. If your husband needs to have a procedure make sure you have a talk with the anesthesiologist who can often adjust medications to reduce the effects of the sedation. Good luck!
My husband is scheduled for a colonoscopy and I have been searching all I can on the effects of anesthesia. At this point I think I'm going to cancel it. I certainly don't want to put him through something that will make his confusion even greater. This is a rough journey we are all on. May God give us all the strength we need to endure. I found this link interesting and though I would share it with you. http://www.healthboards.com/boards/archive/index.php/t-14066.html
Someone's doctor mentioned "benign neglect" back last fall. I think what he meant was that taking away medications for milder conditions during the later phases of this disease is a way to allow the patient to slide into an earlier and easier death. It doesn't qualify as real neglect but just accepts the fact that at some point you no longer treat some underlying conditions like high cholesterol or high blood pressure, but let nature take its course.
This isn't so different from realizing that there is a point where you don't treat with antibiotics, or don't automatically revive someone who's heart has stopped beating. It just happens earlier.
At this point in my husband's disease he is still taking all his meds. But no one has even suggested a colonoscopy because he can't have one while he is on blood thinners for his pacemaker. At some point that pacemaker is going to fail and I am facing the reality now that I probably won't let them fix it.
There a plenty of posts about anesthesia over on the Alzheimer's Association web site. Bottom line: There are three basic types of anesthesia. There's a local, which just numbs the spot. Then there are general anesthetics, which are either administered by inhalation, or by intravenous injection. Nothing is proven yet, but there is a lot of anecdotal evidence that GENERAL anesthetics administered by INHALATION can be a problem -- can exacerbate AD symptoms, perhaps even, if inhaled in low doses for many years, trigger AD. So far, it appears that neither the local anesthetics nor the GENERAL anesthetics administered INTRAVENOUSLY are a problem.
I haven't had a colonoscopy yet, but my sister has. She said no big deal, at all. One minute, she was talking to the doctor, and the next minute, it was all over. The sedative put her happily to sleep. She said it was a whale of a lot better than having a flex sigmoid, which only looks at a smaller part of the intestine.
I think, unless the doctor had some special reason for recommending the colonoscopy (was there some sort of symptom that concerned him, or is this routine?), the money may be the driving factor here.
GET IT DONE! One of my best friend's mother died of colon cancer this year, no colonoscopy. (So I took my friend in for her 1st this year, in her 40's, but with the family history.) Katie Courik says it all. I also have a friend 60 yrs old, & her husband had colon cancer & she still hasn't had a colonoscopy. I had to force my husband to get one. Well, with a history of cancer, that's a no brainer. Everybody get one asap. Early dectection is the key. This was my second & I'm 58.
divvi, yes, you should definitely get examined, be a good girl.
I've been told that a colonoscopy is much easier on you than a flex sigmoid, for the simple reason they do give you a sedative for a colonoscopy. For a flex sigmoid, since they only examine the lower part of the colon, you get to tough it out. (Ouch ouch OUCH.) But even if your doctor wants the flex sigmoid, do it. It only takes a very little time.
Comment Author Mary in Montana CommentTime 3 hours ago
My mother also died from colon cancer at the age of 56. I have four siblings. My oldest brother and youngst sister both had pre-cancer polyops in their early- to mid-fourties. In my little sister's case, if she had had the sigmoidoscopy, it would not have found the polyop as the polyop was further up in the colon. I get on a band wagon about this one because the medical community and also the American Cancer Society and the insurance companies all push the sigmoid to people under age 50. They do not offer any kind of "insurance paid" preventative testing for family history. So, for what it's worth, yes, please do get your colonoscopy. I and my next younger sister didn't have any problems. My next oldest brother, now age 52, has not been checked. I figure his odds are 50/50.
It is painless. It doesn't take long. Put it on you list of things to do. You must have someone willing to drive you & drive you back home & stay about an hour while waiting. Please EVERYBODY. Go for the colonoscopy.
My point was, all you caretakers, take care of yourselves! Everyone is so wrapped up in caring for their spouses, but they shouldn't neglect their own health. This is not major surgery where you are "under" for hours. It is only minutes. I don't know how old Trish is, but I would skip the procedure for your husband, if you are over 50, when you can afford it, get one for yourself. It's amazing to me this has turned into a dicussion about spouses. Have you all forgotten about yourselves and that you too exist? From time to time you have to focus on yourselves. Please forgive me if I've been too harsh.
If someone is in the last stages of AD, I doubt any oncologist would suggest heroic measures in that case. Why do the screening with late AD when they are essentially "terminal" anyhow? That's what doctors mean by benign neglect.
But all of you caretakers are not dying, and you need to do all you can to enhance and protect your own health.
i do need the push and thank you Val. i am getting an appt in the next couple of weeks first for my oby/gyn and mammogram which i put off as well. THEN after that the C********-:)as soon as i get the specs on my insur and if its all covered and/or how to pay:) ihave a 2500deduct. ouch. this is part of the reason i havent done much..i 'got it' though, thanks for the push. divvi and pss sunshyne i saw in march 08 you hadnt had it done eithr, had it done since???:)
My insurance company will not only pay for the colonoscopy, it actually sent me a big package with a whole list of tests they are urging me to take. I'm already covered on the mammograms and most of the other tests. The surprising one was the colonoscopy. My California insurance company would not pay for it even though there was blood in my stool (turned out to be a hemorrhoid). It was one of the first things I asked about when I went on Medicare in Pennyslvnia. My mother had colon cancer.
My doctor insists on sigmoids, divvi, and I have had those, every other year, like I'm supposed to ... even though they hurt like billybedarned. So don't you go trying to use me as an excuse!
And I also faithfully do the test for occult blood in the stool.
AND I do the mammogram every year, and the pap smear every year, even though the doctor thinks I could go to every other year.
I'm better than you are, so nyah nyah nyah.
(Now that this is being brought up -- I've been giving very serious consideration to switching doctors. When I do, I'll see if I can't find one who'll recommend the colonoscopy instead. A sedative would be nice!)
Sunshyne, changing Docs sounds like the best plan for you. Hard to believe he wouldn't recommend the obvious.
Starling, what type of device does your husband have? Mine has a CID that ws just replaced last year..good for another 6-7 ! In any case, he had a colonoscopy with no problems at all. They just have to plan ahead for the blood thinner. He is good for another 10 years. I have had two bad polyps so our children were advised to have the procedure 10 years eariler than normal. Daughter did with no problem, son listened to friends about the horrif time (done YEARS ago!) and refuses. I'm siccing his new bride on him.
ok sunshyne you've been a much better girl than me:) i am gettingmy calendar set up asap for all the 'me' things too.. thanks for the encouragement. divvi
I actually have no idea what kind of divice it is, except it is a pacemaker. The brand is Vitatron and it is a C-Series according to the card my husband carries. It is the first of the digital pacemakers that company produced.
Question, any idea what a colonoscopy runs ??:))haha. my 2500 dedu is met! whohoo until jan 09 so i HAVE to get all this done now without delay..i will owe 20% so just trying to feel things out moneywise...just an idea would be good to know! divvi
Call a colon & rectal specialist in your area & ask. Call several. Try to get recommendations from friends. The 1st one I had I wasn't pleased with. They used heavy duty anesthesia, took me a long while to wake up. They also started the procedure while I was still talking, obviously not "out" yet, and it was painful for a minute, (long minute.) I used the one I took my friend to this time, and it was a totally different & pleasant experience.
well last time any dr started something before i was 'out' i put my foot thru his glasses on the 'way ' to lalaland and this was in childbirth 38yrs ago. so i will be overly cautious to tell them to be safe or sorry.:) thanks, D
Divvi, I have put off having a colonoscopy as well, but my reason is not financial, because my insurance pays all but $200, so I'll have to admit my excuse is that I can't stand to sit on the john for 4 hours or more the night before, and have a migraine headache the next morning from no caffeine until after the test! I had my last one over 14 years ago, and it was such a bad experience, I've been a coward since! Every year when I have my physical and mammogram, my doctor sets up my colonscopy, and I cancel it. My co-workers get on to me all the time. They all have theirs and know I should also. I know I've got to do it. Especially now. I'll see about scheduling it when I get back from Houston in a week.
Mary, I started on my liquid diet 12 hours earlier than I was supposed to. The last solid food I ate was a banana at breakfast. I also ate very lightly the night before. And my doctor started me out with a strong laxitive. All of that halfed the amount of go-lightly I had to take. Basically I did not spend 4 hours on the john, and I was actually complemented on having done such a good job with the clean out which made their job a lot easier.
I was also told to eat jello at 10pm because I was an early afternoon appointment. I did what I was told. It all worked out a lot easier than getting ready for major surgery a few years earlier.
MARY! Would you rather sit on the potty for a few hours OR wake up one day & have someone tell you you have colon cancer that has spread, and there's nothing they can do for you. That's what happened to my friend's mother, nothing they could do for her. Had spread to her uterus, etc., couldn't operate. Keep her "comfortable." Rather a little discomfort now than being kept comfortable with hospice care. Now come on, compare that to sitting on the potty for a while. Put it in perspective, it's no biggy. Everyone, if you schedule one, do it in the morning. I was starving, my major complaint. But then the nurse told me, think of those people caught in floods, etc., that have no food or water for days. (She was going into surgery the next day for a cyst on her uterus.) So everything is relative.
Mary, Mary ,Mary.
I took 32 "horse pills" 16 starting at 5pm 16 starting at 9. It was all over by 10pm. It wasn't painful, just annoying. It was mostly water for the most part (I wondered how water comes out of our bottoms) I even debated taking the last 16 because it was mostly clear liquid. But did what the dr. ordered.
i will be sure to do this then! awesome...my 88yr old mom just had a "C"..:) she complained she just could not finish the junk to drink it made her nauseous..so this is great news i will definately find a dr who does pills and will WAIT til i am sooooo out of it...if my mom can do it i guess i am suffer thru it too:) she is here now and says i need to get one too. awww. divvi
I didn't have any nausea. You just have to drink a lot of water with the pills. I think that's why all I was seeing was water coming out by about the 5th time I went. I drank chicken broth, allowed, to give me energy. Afterwards, my dream was going to McDonald's. Something I never do. But that came to a screeching halt with my list of things I could eat. Went to the grocery story & got Aunt Jemima's pancakes microwavable, on the list. Can't remember the last time I had pancakes, but they were delicious. So that was my reward for being so good to go through with this. Find out in advance what you will be able to eat for the next 24 hrs. I didn't have any of it in the house. Also bought baked potatoes, etc.
Val, Mary says she gets a migraine from the prep. I don't know about you, but I've only had one migraine in my life, and if I ever have another, I'd prefer it if they just shoot me.
Well, I've never had one, and I have heard they are hell. But how about reducing the amount of caffeine going into your body prior to the procedure. She said it was a caffeine withdrawal induced migraine. NO MORE EXCUSES. Sorry.
I am fairly new to the site (about 2 months) but I feel as though I know each and everyone of you. My DH was diagnosed last month with MCI but that is not why I am contributing today. A few weeks ago I received an email about this topic and thought it would bring a smile to each of you who have had yours. To those of you who haven't it really isn't that bad! I am attaching it in two parts (it is too big for one post), it was written by a Pulitzer Prize winning author. I hope you enjoy it as much as I did!
Dave Barry's Colonoscopy Journal
..... I called my friend Andy Sable, a gastroenterologist, to make an appointment for a colonoscopy. A few days later, in his office, Andy showed me a color diagram of the colon, a lengthy organ that appears to go all over the place, at one point passing briefly through Minneapolis.
Then Andy explained the colonoscopy procedure to me in a thorough, reassuring and patient manner. I nodded thoughtfully, but I didn't really hear anything he said, because my brain was shrieking, quote, ‘HE'S GOING TO STICK A TUBE 17,000 FEET UP YOUR BEHIND!'
I left Andy's office with some written instructions, and a prescription for a product called 'MoviPrep,' which comes in a box large enough to hold a microwave oven. I will discuss MoviPrep in detail later; for now suffice it to say that we must never allow it to fall into the hands of America's enemies.
I spent the next several days productively sitting around being nervous. Then, on the day before my colonoscopy, I began my preparation. In accordance with my instructions, I didn't eat any solid food that day; alI I had was chicken broth, which is basically water, only with less flavor.
Then, in the evening, I took the MoviPrep. You mix two packets of powder together in a one-liter plastic jug, then you fill it with lukewarm water. (For those unfamiliar with the metric system, a liter is about 32 gallons.) Then you have to drink the whole jug. This takes about an hour, because MoviPrep tastes - and here I am being kind - like a mixture of goat spit and urinal cleanser, with just a hint of lemon.
The instructions for MoviPrep, clearly writt en by somebody with a great sense of humor, state that after you drink it, 'a loose watery bowel movement may result.' This is kind of like saying that after you jump off your roof, you may experience contact with the ground. MoviPrep is a nuclear laxative. I don't want to be too graphic, here, but: Have you ever seen a space-shuttle launch? This is pretty much the MoviPrep experience, with you as the shuttle. There are times when you wish the commode had a seat belt. You spend several hours pretty much confined to the bathroom, spurting violently. You eliminate everything. And then, when you figure you must be totally empty, you have to drink another liter of MoviPrep, at which point, as far as I can tell, your bowels travel into the future and start eliminating food that you have not even eaten yet.
After an action-packed evening, I finally got to sleep.