What is it about AD that very few Drs and other medical people don't want to say the word Alzheimers. The Dr. I had my DH to yesterday told me not to mention the word. If your DH or DW had cancer that is fatal they tell them. If they have other potential life threatening conditions they are told. I guess I have missed something in all these discussions ....what is the reason for the secret???
Also, what is the reason for no sleeping pills and all these caregivers are burdened with the pacing, etc. at night and can't get sufficient sleep to carry on the next day. So what if they become addicted to sleeping pills. Sorry...don't understand this one either.
Judith, I can't answer your first question as that has not been our experience. Our doctor used the Alzheimer word immediately but then tried to soften that blow by telling us about all the research and not to lose hope. With regard to the sleeping problems, have you tried Melatonin? It seems to have helped my husband settle more easily and sometimes even sleep through the night.
the first neurologist my dh saw just did not want to give in that it was ad. he told me dh was the same age he was and he was just too young. he said there had to be something else going on. dh had already been to several specialists to rule out other problems. he sent us to another neurologist to get his opinion and after more tests and a pet scan. ad was confirmed[as close as it can be] as the diagnosis. it is just a scarey thought and alot of drs are not educated on how to handle this,but everything else has to be ruled out before they will give you the diagnosis of ad. there are so many other illnesses that can mimic the earlier stages of ad. a person totally losing themself before death occurs is a terrifying diagnosis my dh does take sleep meds and it does help. i am like you,i do not understand why drs won't give sleep meds,although some sleep meds do cause forgetfullness,and they don't need more of that. my dh takes tradadone at night and dr said it is not habit forming,again,i am like you,why does that even matter? thats the least of their worries. jav
Anything that is addictive you can become tolerant to, then the weaning process. I'm guessing that is the reason? Melatonin is a great natural rememdy. Over the counter.
The doctor said Vascular Dementia as soon as he had gone through his checklist and something popped on the CAT scan. I'm told my husband's chart says Alzheimer's as well, but frankly that does not surprise me. So there was no secret. My husband was there when the words were said.
Did he understand them? Don't have a clue.
And I agree about the sleeping pills and anxiety pills. Who cares if they are addictive. As for getting tolerant to them, then you wean them off them, and at that point they generally are in a different stage and don't need them anymore, or they get so violent they end up in a locked ward where much stronger meds are attempted.
okey dokey, anything that gets you through the night! Go for it! I would have said go for it before, but I was just trying to get into the dr.'s head. I am speaking as one who drugged her husband to sleep after a rage. JUST LEAVE ME ALONE & GO TO SLEEP!
Val, yup. And if my husband starts raging, I'm getting the doctor to help me drug him to sleep on a regular basis. Right now a glass of wine with dinner seems to be doing the trick.
It does the trick for me! Red wine, for the antioxidants. Ha! I'm all about antioxidants. In fact, I saw an Oprah show the other day, some cities in India have a zero % of AD. It is the diet! Turmeric, etc. I eat Acia in a smoothie form, I special order, a fruit from a special palm tree in Brazil, the highest antioxidants on the planet. Emailed Joan some info about diet preventing AD, but no response. I think this is the under covered, undiscovered answer.
The difference between telling someone they have cancer and AD is that one presumes that with cancer the patient is fully cognitive about everything and understands what is going on. AD is completely different because the patient lives in another reality that is far different than the one we live in. Many AD patients are just fine w/the word Alzheimer's, many are frightened beyond belief, most, as time goes on, don't understand it anyway. Tell them they have milk and honey, they won't understand, they cannot process the information the same way that we can. Personally I never mentioned it to my DH because I did not think he would understand the enormity of it all and if he did, it would be terrifying. Others have told their LO's and it was fine, the LO said they were gratful to know what was happening, so it's a matter of an individual choice as only the CG can know how the LO may react. Many CG's have been shocked when the doc says AD in front of the patient; others have been grateful they didn't have to say it; many docs will not mention it because they don't know how the patient and family will react, so they try to be gentle about it. Many families do keep it a secret because there is still a stigma attached, as there was to cancer 50 yrs ago.
So, OK, you tell your LO that he has AD. Maybe he will say, 'Thanks, I feel much better now knowing that my mind is being destroyed and I have a terminal disease that will take me back to infancy.' Maybe. What kind of response from him would be acceptable? As I wrote yesterday, once you accept that you are not dealing w/a purely physical disease like cancer, once you accept that you LO can no longer mentally process what is happening to him nor understand the reasonable things you say to him, you will not want to treat him in the same way that you did for years. You have to learn to lie like a Persian rug, to practice deceit, to eschew honesty and do the opposite of the things we were all taught as children. If you tell someone they have cancer, they are not likely to fly into a rage and threaten you, but it can easily happen w/AD. 'No, I'm not sick,' they yell, 'you're just trying to make me crazy,' or words to that effect. If they have agnosignosia, they really believe they are not sick. But if they are using denial to get thru it, then that's OK, too. Give them that option. To tell or not is a personal choice, but if it enrages your LO to hear it, then what's the point?
As for sleeping pills, they did not help my DH but 1/2 a Xanax really calmed him down. Ask the doc why he won't prescribe them.
Really, I only want to keep you from pushing the wrong buttons. You are not dealing with someone who has normal cognitive reasoning abilities. With all my heart and soul I wish it were otherwise. 15 yrs ago I rejected what I am telling you and the bizarre behaviors have not changed one iota. Since then, some meds have helped some people sometimes, but AD is still AD. Sometime I did stumble over something that worked for a bit, but, of course, things change all the time w/AD. But it's no secret, mention it if you want to. I certainly came to be able to talk about it w/others, but never with my DH. Just personal choice.
I don't talk about it with my husband either. He was there when the doctor said the words about the diagnosis, but I don't know what he understood and what he didn't understand. And I don't know what he knows now.
I don't see any reason to discuss it with him. If there are decisions to be made, I have to make them. He no longer can do that kind of reasoning. At this point he can't decide what he wants for lunch.
I made the unfortunate mistake to try to discuss this w/ my husband. How cruel. There is nothing to be done for him, not AD, but whole brain radiation ruined his brain. What was I thinking? No aricept, nothing could help him. I didn't mean to be cruel, I was just trying to get through to him the impact of his decisions. Of course, in the beginning I thought it was AD. He probably doesn't remember the discussion anyway. But I do feel bad. Will NEVER mention it again.
Like several of you, I didn't have a choice about whether or not to tell my husband. The neuro announced "It's as plain as the nose on your face he has dementia" and went on to talk about the additional testing she wanted to do to confirm AD.
I don't avoid using the word around him, and he's fully aware I come to this message board. He sometimes asks me how y'all are doing (I sometimes tell him the funny stories, like the dog who punished himself for chasing the cats ... too cute.)
Plus, of course, he's in the longitudinal study at the AD Research Center, and he was in that clinical trial for a couple of years.
BUT ... I don't discuss AD in terms of HIM having it, unless he asks me questions. He sometimes says he doesn't think he actually has AD, sometimes says he knows he has it but is sure he'll die of something else before he develops any really bad symptoms. Once in a while, he'll ask me for examples of things he does "wrong" or times that he's "forgotten" something. I give him a brief answer, as gentle as I can, none of the "worse" stuff (not that he's at all bad yet, compared to most of your spouses.)
I did notice that when we were watching one of his favorite TV shows the other night, Forensic Files, they started talking about the father having AD. I assume he actually didn't, that there was some poison or whatever affecting the man and his son. I never found out what actually was going on, however, because my husband abruptly announced that he was tired of the show, and turned the TV off. And he has started coming up with things he has to do elsewhere when an aricept commercial comes on...
when DH got his Dxthe neuro also stated 'vascular dementia, and/or AD." i was hearing those words as if i was in a long hollow tunnel, you know the sound. DH said its job stressed related and we left and he never said or discussed the dr dx again. it was alarming to me for DH to ignore the DX but that was his choice and so thats the way its been all this time. he may have had that agnosia..whatever the word where he cant grasp the implications. i feel now it was less cruel to never discuss it and just get on with any treatment plan..divvi
I thought it was anosignosia--I noted the different spelling, but I'm not an expert. Look up both in search and see what comes up. I think it is sounded out just as it is spelled. An-o-sig-no-sia. I understand it is commonly applied in mental illness, AD is a disease--not mental illness--but I think it is applicable to many AD LO's. Call it what you want, I believe that many AD people often believe they are just fine, we're the ones with the problem.
Well, I guess I'm outnumbered on Google. I went to the site & looked it over briefly. Very intersting but a lot to comprehend. On my list of things to read which gets longer each day. Thanx.