Today we saw DH's PCP. He hasn't seen her in almost a year. We saw her last November, and he saw the neurologist in January and July. Well, I should point out that I truly like DH's PCP. She is very personable, and very thorough in her care. But today I felt a little "bad" because in reviewing the meds with the nurse I answered that DH was no longer taking his BP med as his BP has been pretty low. He often complained of feeling "whoozy" so I stopped the toprol. Lipitor was ordered for DH prior to him showing signs of AD. He was on Lipitor about a year and a half before he was diagnosed. His cholesterol level had been quite high, but came way down to the normal range a couple years ago. I heard many conflicting reports about statins either contributing to AD, or helping prevent AD and I just got frustrated. It's expensive, and well, I didn't feel the Lipitor was necessary any more. Well, the doctor questioned why I would stop the Lipitor when I knew he had high cholesterol before he went on it. She said, "He doesn't need to have a stroke to add to his problems." She sent us over for a cardiac echo since DH's BP was just 106/ 64, OFF bp meds, and she gave us an RX for the Lipitor. He is to take it for 8 weeks before we go back and have labs drawn. We'll get his cholesterol level then, and also check blood sugars. Her concerns are that the cholesterol level may not be in check, and that Risperdal messes with blood chemistry. Anyway, I guess I'm just writing this because I left the appointment today feeling kind of "small" for making decisions on what my DH does or does not need.
Don't feel 'small.' Sometimes we CG's have our reasons, maybe we can't or won't express them fully, but they are still valid. The docs have their reasons, too, but they aren't living with it 24/7. Been there, done that.
Diana, we just saw my husband's new PCP, a geriatrician who works at the university AD Research Center. My husband's cholesterol is a bit on the high side, has been for years. He was originally put on Lipitor (this is two or three doctors ago) and had horrible insomnia from it, so he refused to take it any more.
The new PCP asked me about putting him on a statin, and I told him about the insomnia. He said well, there's enough controversy about statins and AD that he didn't see any reason to try again with another statin, and just left it at that. So even a knowledgeable doctor wouldn't necessarily agree with your husband's PCP.
Diana, did his PCP get a cholesterol reading? If his reading is in the normal range, why would you have him start taking the Lipitor again?
Each doctor views his patients differently, but they only see them for minutes once a year. Sunshyne is right - doctors disagree with doctors over what to do.
I've come to the conclusion that no one knows anything for certain. We're all flying by the seat of our pants. There are times when I feel that I can better judge what meds my husband needs than anyone else. Sometimes, it feels as if the docs just throw a bunch of scripts against the wall to see what sticks. Maybe not all doctors are like this, but ultimately I'm in charge of his medication and unless I see an improvement in something, he isn't taking it. With my doctor's knowledge, my husband takes very few meds and that seems to be working fine. Good luck to you and your husband.
I can't help but think to die of a stroke would be better than what most of our loved ones have in their future. You know what's best in your situation. Don't feel guilty! My DH's PCP gave us the choice to go on cholesterol lowering medication or not. He brought up the term "benign neglect".
Interesting, My DH hates taking pills, This is a man who used to fill himself with every available vitamin known to man and some unknown too. He'd read prevention magazine and follow everything they said. Now he balks at 2 tylonol for his shoulder pain, nevemind the exelon, prilosec and zoloft in the AM and the Lipitor diovan and exelon, in the PM. So, You know what, if he takes it fine, and if he doesn't take it, I don't fight anymore. Benign Neglect may be what it is, but I put them there, remind him of them, and that's where I stop. he also forgets his eye drops, but I do remind him of those. He does it himself so again, all I can do is remind him. you do what you can.
Thank you everyone for your replies. I hate when something one says (the doc), whether implied to create guilt, or simply "just wondering/questioning" makes me doubt myself. I think part of my reaction was fear too. Like, "Wow. Could I actually be charged if DH suffered a stroke that might have been prevented?" I know, its a stretch, but I do too often start doubting myself whenever someone questions my intentions. AND SHE (doc) MAY NOT HAVE BEEN QUESTIONING MY INTENTION. JUST MY DECISION.
We don't have a current cholesterol level as the doc said lets wait until 8 weeks on Lipitor to do the labs so DH only has to get poked once. So, that tells me she is not too terribly upset or concerned about that. But, because his BP is significantly lower than it has been over the years, AND she knows he hasn't been taking BP meds for months now she needed an explanation for the lower BP. Thus the cardiac echo. I think she just wanted the status of his heart pumping efficiency to see if that in itself is the cause of his "Whooziness." I had told her the primary reason I made the appt was because I knew his dementia related meds could cause that, but was wanting to have him checked out just for principle sake.
Yes, I do think for one to "die" of a stroke instead of suffer AD is more humane. However, if he has AD and suffered a non-lethal stroke I just think how much worse that would be.
New Realm - you truly know your husband best. What would he want if he was rational and could tell you what to do? I have gone through several stages of the guilt/questioning trips. In one way I think of them as a good thing as they make me really stop and think through what I am doing. In another way, they can be scary and really make me wonder if I am doing the right thing for him. So far, I have been able to make the decisions for him and most of them haven't been to difficult. We are getting closer to the point where I may have to make some tough decisions on his healthcare. Those decisions would be medicate or not, keep him alive or not. I know he wouldn't want to live the way he is now I just keep praying that when the time comes, I am strong enough to make the decision he would want me to.
This is one of those areas where there really isn't a clear-cut right and wrong. You do have the right to go for a second opinion if what your PCP doesn't sound right.
... uh, let me get this straight. The doctor prescribed Lipitor without knowing what your husband's current cholesterol levels are? So we wait eight weeks and THEN do the blood analysis, and how on earth is she going to interpret the results?
This lady wouldn't last very long in research.
Not to mention, she is making the assumption that the AD brain and the AD metabolism are the same as they are in other patients -- which of course, they're not -- and also making the assumption (apparently) that any old statin will do. There is some evidence that simvastatin is associated with a strong reduction in the incidence of dementia (and parkinson's), whereas Lipitor has only a minor effect, so IF your husband needs a statin, it might be better to go with simvastatin (which is also a lot cheaper than Lipitor).
Plus, whether statins are useful in preventing strokes depends on whether the patient has already had a stroke (and, one assumes, on whether the patient has already had TIAs and, by extension, maybe even on whether the patient as vascular dementia mixed with the AD). Lipitor may slightly INcrease the risk of hemorrhagic stroke when taken by people who have already had a stroke.
Since this afternoon DH has been pretty anxious. He's had some looser stools(?) or simply losing sphincter tone(?) for days, on and off. He has a long standing history of hemorrhoids and constipation so for the past couple years he routinely has a softener with his evening meds. Yesterday doc said just hold back on those and watch.
But today, DH won't get his mind off it. Keeps going into the bathroom and exits announcing his results (thanks. Just what I want when I'm in the kitchen preparing something to eat). DH takes pain med long term now, thus the routine stool softener. So-oooooo! I took them away as of last night. Keep telling DH to give it time and not to worry. He, on the other hand is obsessed with the notion that he needs to see the doc. I tell him we were just there yesterday. I tell him her orders were to give it a couple days time. I've given him yogurt with Xanax crushed in it, and he seems to be relaxed now.
The next question this begs for me is whether or not the Namenda he's been on for 3+ years is no longer beneficial. I decreased it by half for one week recently and it seemed not to help. A couple days I thought it might have been an improvement, but then not so sure. How have others experienced the Namenda question: "When is enough enough? When is it no longer helpful? When is it maybe even hurtful?"
OH! Sunshyne,
that's right, we didn't fill the RX for Lipitor yet. I kind of wondered to myself what the point would be by NOT having a starting value of DH cholesterol before starting the Lipitor. I'm still on the fence with this one.
Diana, at the risk of upsetting the doctor even further ... All you can do is make your best guess, and go with it.
A gazillion people have questioned whether to stop the AD meds after a while. The problem is, there is no way to know whether Namenda is still helping your husband. It was originally approved for moderate to severe AD, having been shown to be effective, on average, even in patients with more advanced AD. On average, the drug appears to be effective for many years.
Except that's only on average. It may be quite a different matter for a particular patient.
Some patients actually improve when taken off Namenda after several years -- presumably, they developed an adverse reaction over time which masqueraded as AD. Some patients don't seem to be affected one way or the other. Some patients go into a very steep decline. The only way to know which your husband will do is to try weaning him off of it very gradually, and see how he does. The one really bad thing about trying this is that, if it was actually still helping him and he does go into a nosedive, starting the medicine again will not get him back to where he was before you stopped it.
For me, as long as I don't see any signs that it's hurting, I'll keep my husband on it. Heaven help me if I start to wonder if it IS hurting him...
My husband's doctor cut his Zocor in half about a year ago. Felt that it was contributing to his leg pain that also goes with his Supranuclear Palsy. He hasn't even checked his cholesterol levels in a while since he says that if he can't tolerate the medicine no need to check the levels. My problem is deciding what to do about the Coumadin. He was put on Coumadin 3 years ago after going into A-fib. Now, due to the number of falls he has the doctor said that I need to decide to keep him on the Coumadin or not. If he hits his head, he could bleed to death before we know he is bleeding if he stays on the Coumadin. If we discontinue the Coumadin, his risk for stroke goes sky high. The doctor absolutely refuses to help me make this decision. Says it has to be my decision. I initially said that he would probably rather die of a bleed than be further incapacitated with a stroke but now I am second guessing myself.
My wife was having pains in her buttock, so her doctor stopped the simvastatin (we had already switched from Lipitor to simvastatin). It hasn't helped the pain, but I don't plan to restart the simvastatin. Her cholesterol wasn't that high to begin with. I can't see it did anything, either way, regarding the AD.
My hubby was put on Lipitor at first, years ago, then switched to lovastatin (cost dif.). His cholesterol was a combined figure of 234. His diagnosis of VaD in 2006, came about during tests which showed 2 OLD Stroke scars. He has had several TIAs as well. He's still on the lovastatin and choleterol combined score is 159, with really good balance betwen the good,bad,and trigliserides(sp?) He is also on Plavix. His BP runs in a low normal range--always has. We've been round the track a few times trying to get a good balance on his psych meds since we had to replace his Thorazine and Tegretol. Dealing with Black box meds, meds which just say they're not recommended for use with elderly patients, may cause this, that, or the other drives me crazy if I let it. The best I can do is read up on the meds, take the advice of the Dr. (if it works), check with or listen to input for the pharmacist in case of possible interactions, try,, stand by, and pray. If he wasn't on a cholesterol med, I doubt I'd do it now, because it take time for them to become beneficial,m but he has been on one and it has worked, and I'm not messing with that now, even if the statin may notbeen that great for him to have otherwise. Sometimes the image of the Dr. throwing the scripts at the wall to see what sticks seems awfully true.