Scary Reading Material. [UPDATED YET AGAIN]

August 9, 2009 at 3:29 am (By Amba)

A web forum on Lewy Body Dementia, which is probably what J actually has.  Sample post:

I have just had a few days break from it all, I will pick R. up tomorrow from respite. I am dreading starting back into it all again. I phoned him every day, and yes I had the same thing, who are you with? I love you? when will you pick me up? what time exactly? It is so hard for them, but it is so hard for us as well. I believe one must try and have some life for oneself, if you don’t the disease will destroy you, we have a duty to ourselves as well. All the nurses, doctors, and aides that I deal with have finally convinced me that I must look after myself, it may sound heartless, but I admit that I am beginning to believe them. They tell me they have seen so many carers go before their LO, that is not what God wants. We are all on a journey, and sadly this is our LO journey, we cannot change that. Believe me when I say that I have cried an ocean, I miss the old R. so much, I have all the best care for him,but I do want to survive this, and I don’t feel guilty for feeling this way anymore.

Something else sticks in my head:  I forget who told me a common piece of folk wisdom is, “He got sick and she died.”

I try not to haunt such places, to accept that this is the real community to which I now belong.  But what I see when I do go there is that this is a very long haul, and that the disease can in fact be fatal — to the caregiver.

UPDATE: Another woman on the forum who’s taking care of her husband did a kind of “intervention” on me, saying that when you respond to every suggestion with “That won’t work,” it’s a sign of “severe burnout.”  She then made about eighteen suggestions, sixteen of which — excepting bankruptcy and antidepressants — I’m going to check out starting tomorrow.

When I said that, she kind of leaned on me a little bit to take antidepressants. “Better living through chemistry — your husband is on drugs to improve his quality of life. Why would you not take advantage of the same for yourself right now? If you were cold, would you insist on continuing to run in place to try and keep warm rather than accept a blanket?”

I wonder what that’s about.  I am pretty anti-drug, and karate workouts are a very effective antidepressant for me.  Why wouldn’t someone say “Great, more power to you”?  Why would they try to convince you that you ARE depressed (I’ve been depressed, I know depressed, this ain’t it!  fatigue, stress, frustration, loneliness, yes; depression, no) and SHOULD take medication?  To validate their own choices?  Or just on the assumption that everybody is like them and will benefit from the same things?  It’s scary to me, the medicalization and medication of ordinary unhappiness.  Take a pill when things get rough??

Many of these women have more help than I do and seem more unhappy.  (Maybe I should urge them to take up karate?)  Their husbands sound generally more mobile than J, but also more demented.  Some of them have been at this already for half a decade longer than we have.  They are giving me a preview of what’s ahead.

UPDATE II: A part of the advice I received was to have J evaluated for hospice, because they can give you some in-home care relief paid for by Medicare, a nurse who knows the patient well who’s on 24-hour call, etc.  I never tried that because I figured he wouldn’t qualify:  he’s so not terminal, God bless ‘im.  I thought hospice was for terminal care only.  But it turns out the criteria are somewhat elastic.  What could disqualify him is that he can still communicate pretty well.  What could qualify him is that he’s so immobile and utterly dependent — in the doctor’s words, “degenerative disease and basic care dependency needs.” Hospice can come and go:  if the person stabilizes and is doing pretty well they may kick you off it until you really need it again.  But even to have that kind of help for a while . . . I can hardly imagine.

And — this is big — the doctor is for it.  For my sake, I know.  That could count for a lot.

Duke Hospice has a residential respite care facility.  That means if I ever needed to, say, have surgery, or just visit my family for a whole week, he could go in and stay there for the duration.

I can’t count on this, because he may not qualify.  If it doesn’t work out, we’ll try something else.

I was thinking that the relentless incontinence, day in and day out, is one of the things that wears you down, especially when combined with dementia (which insures that the carefully placed urinal will be removed to a spectacularly useless location — like the Statue of Liberty’s Torch — just in time).  And then I thought, maybe they ought to have a special, nonterminal branch of this service called “Hoss Piss.”

UPDATE III: Took J to the swimming pool.  He’ll never get into hospice — nor should he.  He’s doing too well.  I’m the one who needs it — LOL.

Rather like people who fall into the gap between Medicaid (too rich for it) and private health insurance (too poor to afford it), (though that’s not literally our problem, thanks to J’s Screen Actors Guild), J falls into the gap between sick enough for hospice and well enough to walk, wash, whiz, and wipe for himself.  In that gap, the considerable burden must be borne by a family member — physically or financially.

You can liquidate your assets and be cared for in a nursing home, but you can’t hardly get help being cared for in your own home, even though it’s cheaper for all concerned.  I can’t figure out if this is nutty or simply as it should be.  It’s “the natural way” (as I witnessed in Eastern Europe where they didn’t have nursing homes), except that we don’t have extended families living together any more and sharing the chores.

By the way, the county social worker told me about a five-star nonprofit nursing home out in the country to investigate just as backup (were I to get sick or something), and then insinuated if I checked it out I might like it . . . Like antidepressants, nursing homes are pushed on you.  “Placement,” they call it.  Placement in the basement.  “Save yourself!” is the cry.  She also urged me to come to a caregivers’ support-group meeting August 20.

If I go, it will be to see if the other caregiver I’ve seen here and there in Chapel Hill goes to them. He’s a soft, stoical man my age or a bit younger, patiently accompanying a ruin of a beautiful woman with some kind of wild, high-stepping palsy.  You can see that before she got sick she must have been proud and temperamental in the good sense, like a thoroughbred Tennessee walker.  I’ve seen them in an outdoor café and in UNC’s neurology waiting room.  He and I both avert our eyes when our paths cross, poignantly and paradoxically together in this salute to each other’s privacy.  I’ve seen her, exhausted by her wayward body, lean her head on his shoulder.

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53 Comments

  1. Ron said,

    For what it’s worth, you have the support of a lot of weirdos out here in floating electron land…avail as you will!

  2. Randy said,

    I’m not sure that there’s much, if anything, those of us who haunt here can say or do, but if there is anything you need…

  3. Rod said,

    Amba: My heart goes out to you. The role of caregiver eats people alive, and often the final illnesses of loved ones are the rocky shoals on which our own health founders. In families, one child steps up to care for an aging parent while the others stop by to visit once a year from Seattle or someplace. When the end comes, the other children are upset if more of the estate has been left to the caregiver. It is so hard for those who have not lived it to understand the relentless, grinding nature of the task.

    A little R & R is essential. Take it without guilt.

  4. PatHMV said,

    My grandfather died of a heart attack, after spending about 3 years taking care of my grandmother, after her leg was amputated from an illness. She survived another year and a half after that and was actually quite healthy, until she died of a brain aneurysm. I’m convinced he would have lived another 10 years, had they not gone through that.

  5. Melinda said,

    As one of Jim’s room-mates in custodial care told me: “Save yourself.”

  6. realpc said,

    This is why caregivers should look for and accept help, and not feel guilty. I spent time at a caregivers’ web forum because of my mother. Most were women caring for parents, and many of these caregivers were sick and tired and miserable. Not all, but a lot of them. Of course maybe the happy caregivers aren’t posting on web forums. But I suspect there aren’t all that many truly happy caregivers.

    I admire Amba for being so tireless and heroic, but I think she should accept help without feeling guilty. Of course I realize she doesn’t agree.

    My mother is in assisted living now and things aren’t nearly as bad as before, but it still isn’t great. My brother and sister visit once a year, and I don’t think my sister even calls.

    Everyone always assumed I would sacrifice my whole life for our mother, merely because I live close. I argued and fought, because I couldn’t see the logic or fairness in it. But now I do see the logic — people want to be happy soif they can stick someone else with the caregiving job they will.

    Anyway, siblings arguing over who takes care of mom is different from Amba’s situation, because there is no one to share the responsibility for her husband. I don’t know if there is any possibility to get government help. My mother qualifies for all kinds of assistance, so we don’t have to pay everything. It would cost a fortune and we’d all be homeless from paying it by now if it weren’t for Medicaid.

    Yes I feel bad that my mother gets Medicaid, since it goes against my whole hard-working responsible approach to life. But it isn’t my fault my mother was always poor since my parents’ divorce. None of my parents’ idiocy was my fault. I had to work hard to get over being raised by them, and then I still lived under the constant shadow of my mother’s problems.

    So I accept my mother getting help from Medicaid, even if I have to feel guilty about it. It’s better than being destroyed.

    I don’t know if your husband might qualify for anything Amba, but my advice (which I don’t think you will take) is to find out. I know your love and devotion to your husband is different from my love for my mother. I love my mother but I have also lived under the shadow of her problems for too long, and I would not describe what I feel as devotion. I know what love for a husband feels like, and it’s different.

    Oh anyway, I do know that millions of women sacrifice themselves for parents and husbands. Occasionally men do it also, but it naturally falls on women. Most of the residents at the assisted living home are women — is it only because women live longer, or is it because men have caregivers and women are caregivers?

    Amba I know it must be depressing for you to read the caregivers’ web sites, but maybe it’s better to know the reality. Too much caregiving, like too much anything, can be deadly.

  7. amba12 said,

    Real — in some respects we’re really really lucky. J has Screen Actors Guild health insurance secondary to Medicare, AND it has a drug program where we only pay deductibles and copays, AND it fully covers me. (So far, I’ve been a bargain — I don’t get sick. Knock on wood.)

    Until I finish off paying debt, I’m going to have to ask my family for money for “respite,” e.g. a weekly getaway. I don’t like doing that because they’ve already helped me a lot. But I can.

    So to a certain extent my hardship is self-inflicted. The people on the web forum suggested I check out the VA, since J served in the Army. I had checked it out before and gotten the impression that VA benefits are pretty much just Medicare benefits at J’s age, but I’m going to check again.

  8. realpc said,

    It would be nice if you could get more money for respite, and if you didn’t have to ask your family. Of course maybe your family doesn’t mind at all. I sure don’t have that kind of family! Well anyway, it does sound like you are lucky in that you both have medical coverage. What you really need, it seems to me, is time for yourself. You might not even realize how much you miss that, since you have been without it for so long.

    About that women who is pressuring you to take anti-depressants — DON’T LISTEN TO HER. DO NOT TAKE DRUGS. For heaven’s sake! I know she is trying to help and sincerely believes her own advice, but it’s really really dumb advice! She’s just brainwashed by the pro-drug cultural mythology, the idea that our medical science has an answer for everything.

    Anti-depressants may be ok for short term use for people who would otherwise commit suicide, but not for anyone else. They do not make you happy, they just dull emotions. Yeah, maybe it’s the answer for people who cannot tolerate their situation and would rather feel dead than face reality.

    Physical exercise is just as good at improving mood, and doesn’t have all the awful long-term consequences. You aren’t depressed anyway, but if you were you could just do more exercise.

    Anti-depressants screw around with the brain chemistry, and NO ONE really understands brain chemistry. So do you want a psychiatrist, who doesn’t understand what anti-depressants actually do, throwing chemicals into your brain? No, you do not!

    We experience emotional pain for a reason, and there is no point in dulling it. Unless, as I said, a person would commit suicide otherwise.

    Oh yes, “everyone” is on anti-depressants, so why not you? That’s what that woman is thinking. She trusts the psychiatrists who believe me do not know how the brain works or how to fix it if it breaks. She thinks anti-depressants are medicine — they are NOT medicine, they are DRUGS.

  9. amba said,

    What’s frightening is that we’re all “on” them now — they’re in the water, peed out by the millions of people taking them and not filtered out of the water supply. Even the fish are on Prozac. More dangerous still are the hormones peed out by women on birth control pills and HRT, which feminize male animals, one may fear not excepting humans.

  10. realpc said,

    Amba, you’re right, it is frightening. And depressing. I might have to go on Prozac because I’m so depressed about all those drugs in the water! It’s so unfair to all of us who tried hard to live a healthy life so we could stay off drugs! Do you think there is anyone we could write to about this? It seems like we just feel helpless about this.

    A while back they gave everyone Valium or amphetamines, and before that it was cocaine or opium. Now it’s Paxil or Effexor or Ritalin. Each time it’s supposed to be different — not bad for you, not addictive, not a drug. We never give up hope of finding the pill that takes all the pain out of living.

    And yeah, the HRT nonsense. Not to mention the hormones injected into cows and chickens.

    It all comes from the idea that nature is stupid while scientists are smart. From all those folks who think Intelligent Design is for IDiots.

  11. amba said,

    Nature is so stupid that we have epidemics of cancer and autism.

  12. PatHMV said,

    The thing with medications to regulate brain chemistry is, from what what I’ve seen, that once you’ve started down that road, it’s hard to get off. My brothers have all been put on Ritalin at one point or another. It’s helped, sometimes, but on the whole, they’ve haven’t like it very much. But every time they want to stop taking it, they have to wean off of it for a period of weeks, usually. Taking the chemicals alters your normal brain functioning, and it doesn’t (can’t) just revert back to where it was before just because you stop taking the medicine. In some ways, it’s like drug addictions in general; you build up a tolerance, so the longer you stay on it, the more you need, and the worse off you are without it.

    To be sure, some people need these chemicals. No doubt about that. But your point about validation of their own choices is right on. Once a person convinces herself that her choice (in this instance, to take such medication) was the right one, she often needs to try to get everybody to agree with her, lest their disagreement invalidate her decision. Rare is the person who can say “I took this because it’s right for me; you need to do what’s right for you, and maybe it’s what I’m doing , or maybe it’s something else.”

    So just because SHE needed the drugs to survive doing this for 10 years longer than you have does not mean YOU do.

    You don’t have to take a pill when things get rough; you could always self-medicate in the tradition of your generation… ;-)

    H.R. Pufnstuff,
    Who’s your friend when things get rough?
    H.R. Pufnstuff
    Can’t do a little cause he can’t do enough.

    H.R. Pufnstuff,
    Who’s your friend when things get rough?
    H.R. Pufnstuff
    ‘he’s your friend when things get rough..

  13. realpc said,

    “you build up a tolerance, so the longer you stay on it, the more you need, and the worse off you are without it.”

    Yes, and it makes whatever was wrong with their brain WORSE, in the long run, instead of better! So it is not medicine, because it does not correct a problem or help the body heal itself. It takes a problem and makes it worse. Therefore, it should not be called medication and should not be considered a treatment.

    Psychiatric drugs are basically chemical lobotomies — people that would have been given a lobotomy in the past because their mental illness was hopeless and uncontrollable now get tranquilizers instead.

    You can have chains and a straightjacket, or a a lobotomy, or psychiatric drugs. So they are better than being chained or having your brain cut up. But for everyone else, they are worse than useless — they will make your depression, your anxiety, whatever, WORSE, in the long run, not better.

    There are ways to restore your brain to some degree of health and tranquility, through a sensible lifestyle.

  14. amba12 said,

    Ha! Pat, I must admit that it crossed my mind — for the first time in about three decades — the night Michael recommended drinking and I was so frantic to alter my perspective by any means necessary.

    I was never a heavy hitter — at the risk of sounding like Bill Clinton, I actually never bought my own. I was a party partaker — a mooch if you will. Because it was an occasional thing, it was always interesting. Because those, um, journeys were not very frequent, I still remember most of them with interest.

  15. Donna B. said,

    Is this drug truther room?

    The only reason drug companies make and sell such awful drugs is that all the good ones are illegal.

  16. realpc said,

    Amba, that is so wonderful that you are looking into possible ways to get help. You will be a better wife and caregiver for J if you feel healthy and happy and have time for taking care of yourself.

    As for drinking alcohol vs prescription drugs — I think the new drugs are especially evil, although of course any drug can be misused. The new drugs crawl around in the brain and do clever things, and the poor brain doesn’t know what to make of it. At least alcohol has been with our species for thousands of years. It occurs in nature and some other animals like it also.

    The new drugs are marketed to patients by suggesting there is something missing from their brain — sort of like insulin is missing from a type I diabetic — and it needs to be replaced. The patient is led to think their brain is abnormal and needs to be corrected by the drugs. This is utterly untrue!! The analogy between depression and diabetes is wrong! The serotonin re-uptake inhibitors do NOT correct a chemical imbalance in patients’ brains. They result in a higher level of serotonin, which may result in a better emotional state, but nothing is corrected. If the patient’s serotonin levels were low, no one knows why or what caused it or how to correct it.

  17. PatHMV said,

    Funny thing about that old TV show, HR Pufnstuff. I loved it when I was a little kid and it was first on TV. Watched it every chance I got. It wasn’t until I got to college that one of my friends clued me in about the not-so-hidden meaning of the lyrics. I can’t say whether TV glorification of violence and drug use affects other people, but not me. I’ve never so much as tried to inhale, or even hung around people while they were smoking it. I saw somebody smoking it at one party I went to, once, but that’s about it.

  18. amba12 said,

    Like “Puff the Magic Dragon.” Or “Lucy in the Sky with Diamonds.” Kinda stupid.

  19. Ennui said,

    As for drinking alcohol vs prescription drugs — I think the new drugs are especially evil, although of course any drug can be misused.

    Emphatic agreement on this side. At least with drink, the “envelope” (in the test pilot sense) is well known. Among the new drugs, my personal favorites are the non habit forming sleep aids that also cause sleep walking and hallucinations. That’s a nice touch.

  20. amba12 said,

    Now that they’re required to tell you all the side effects of the drugs in the direct-to-consumer “ask your doctor about . . .” TV drug ads, I’m amazed that anyone will go near the stuff! Are their doctors telling them “Don’t believe it, they just have to say those things for legal reasons”?

    Of course I would take a medication if I really needed it. But short of necessity my attitude is “just say no.” We have arterial disease in my family, father’s side. One of my brothers, at least is already on statins; he had a spiral cat scan, or whatever, that showed a small lesion of plaque in one coronary. That could be going on inside me, too. I take a baby aspirin. If it came to that I would go on a strict whatchamacallit, Ornish diet. All I’d really have to do is kick cheese, and whole milk in my coffee.

  21. Donna B. said,

    One of my most horrible memories of childhood was thinking that all my aunts must hate me. I was well over 30 before I realized that their hugs were of normal strength and not intended to hurt me.

    Surely, I’m not the only one here who has experienced a loving squeeze to the shoulder, am I? But it’s possible, I’m the only one who experienced such as excruciating pain which radiated for minutes beyond the well-intentioned squeeze.

    My husband, because he loves me, learned how to make love to me without squeezing these trigger points — the knees and shoulders, especially. Yeah, I know… TMI.

    It took me some time to accept that anti-depressants could alleviate this pain. Do I know why? Do scientists know why? Nope, but I know it works. I’ve been without my anti-depressant for over a month now because i am simply too lazy to refill it. The pain overcame my laziness yesterday when my socks hurt.

    The mere touching of the skin of my ankles by the socks is hurting me and I’ve called in the refill for my anti-depressant. My ankles aren’t swollen and it doesn’t hurt to walk. It’s something else, and nobody knows what but anti-depressants help.

    Of course, because I’m lazy and stupid, I’ve let my anti-depressant prescription go without refilling for almost 60 days now. My ankles are not the only place I’m feeling pain. I’ve started taking Tylenol and Aleve daily this past week. I won’t need those once I’m back on my “meds”

    I’m not depressed and don’t notice much, if any, difference between my mood on or off the anti-depressant. What little difference I do notice can be attributed to not being in pain.

    It takes somewhere between 45 and 60 days for the anti-depressant effect on my pain to wear off. I don’t know what that means when the relief comes within 10 days or less.

    What I thought in childhood that everyone must experience the same as I did… therefore thinking my aunts were deliberately inflicting pain, happens to not be true. I now realize that I have suffered some kind of pain sensibility that most people do not. I am happy that there is a drug I can take to remedy this even if I and medical scientists do not understand why it works.

    Why should I demand understanding when I experience relief? Why should doctors demand understanding before providing relief? Did they know why aspirin worked before suggesting we take it for a headache? Of course not. They did not at that point understand the damage it did to our stomachs. Even that knowledge does not diminish the pain relief of an aspirin.

    I would not argue that anti-depressants are over-prescribed. And I would not argue that Annie needs one. I don’t think she’s depressed. Overwhelmed at times, yes… but that is certainly not the same as depressed. However, I do not think it’s unreasonable to suspect or expect that extended periods of being overwhelmed might lead to
    depression in people of a certain mental state.

    Annie seems to have overcome that. She’s not susceptible to feeling sorry for herself… and that’s not a heroic attribute, just one she’s lucky to have. I don’t think for a moment that I wouldn’t be feeling sorry for myself in the same situation and if the rest of the commenters here say otherwise about themselves, I’ll call them liars.

    Mainly, I’ll call them liars because they’ve never been there and they don’t know. It’s entirely possible that Annie could not cope with the problems my brain-injured son has presented, just as I think it impossible I could have coped with the problems J has presented her.

    In reality, I think if Annie and I were to switch places for six months, she would make much more progress with my son than I would with J. Part of this is the possibility of progress and part of it is sheer determination. I don’t like to lose so I will not put pit myself against Annie’s sheer determination.

    And that brings me to the reason I think Annie gets depressed sometimes. J doesn’t really have the possibility to get better that my son has. It’s quite possible that it is an illusion that my son can get better… but it is possible. J’s possibilities are so much less… and that in itself is heartbreaking.

    So… no, Annie is not depressed. And she should not consider taking anti-depressants. I am amazed at the physical strength she has considering her weight and suspect that her training in the martial arts is responsible for this. But, I do not think is the reason she does not need anti-depressants… a factor, yes, but an ultimate reason, no.

    Frankly, I’m disturbed at the way some commenters here have characterized anti-depressants and psychiatric drugs (not always the same, btw).

    As a few have pointed out, alcohol is a psychiatric drug. We are of course more familiar with its drawbacks but that doesn’t mean its drawbacks are worse, does it?

    Nicotine is another psychiatric drug that is not given enough study because it is still a legal drug, but foremost because smoking is considered a social evil… and if anti-depressants get to to point of being a social evil, their benefits will be overlooked as well.

  22. Randy said,

    I’m with Donna here. (I was going to post a comment to the effect that ignorance appears to bliss.) Contrary to what I think has been claimed above, there are legitimate uses for almost all drugs. Extrapolating from one or two personal experiences is rarely wise. That’s how we ended up with the fraudulent claims about links between autism and vaccines. Just as those who think that because they benefited from a drug, everyone else should be on it, those who proselytize against ever taking any are capable of doing great damage.

  23. amba12 said,

    Donna: well, I self-medicate with caffeine daily!

    You are clearly benefiting from what has been discovered to be the calming effect of certain antidepressants and anticonvulsants on nerve pain.

    By the way, Donna, I DO feel sorry for myself sometimes! Maybe not as much as I might be expected to; but not never, either. And insofar as I don’t, it’s more along the lines of habituation than heroism. I have little basis for comparison, little memory of what it’s like to have more freedom, and I’ve largely stopped desiring it or being able to imagine what the hell I’d even do with it. This is clearly an important survival adaptation, but it may be a rough ride to readapt someday — another reason why it’s important to force myself to have more of a life now. Self-denial can become strangely addictive.

    I expect you’re right that your son has much potential. And I’ve probably said before that I recommend the Feldenkrais Method as one way of releasing it, if some aspect of it is something he would be willing to do. Maybe if you took an Awareness Through Movement class or workshop, you’d be able to figure out how to bridge it to him.

    Jacques responds to social and intellectual stimulation and what physical activity is possible for him by coming to life considerably. I know he’s bored silly the days I have to work and he just sits around watching TV. I always feel terrible on a day when I don’t get him into his chair and out of the house, or at least to the table or to a “sitting karate” workout in the living room. The sad thing with him is that nothing seems cumulative. He doesn’t seem able to remember or learn very much from one time to the next. But “in the moment,” as it were, he still has a lot of potential.

    Randy, you’re right that blanket condemnation of drugs that can relieve psychic and physical pain and even save lives is wrong. But I tend to disagree with Donna and to agree with realpc that these drugs are WAY overprescribed; that we now reach for them when we’re in any kind of normal life distress, where we used to rely on social supports, grieving rituals, and our own ability to endure, cope with, and even explore the pain that life brings. When grief, for example, struck people used to be encouraged to wail, scream, beat their breasts, tear their clothes . . . these catharses were ritualized. Now we get a Prozac prescription, which makes the intense pain more bearable, perhaps also shallower. Yes — it’s wrong to generalize because people differ so much in their sensitivity and coping ability. People may be surviving now who would have been destroyed by life in the past. On the other hand, people may be medicated now who would have found their way in the past and been stronger and more compassionate for it. I know that several of my nieces and nephews have been given antidepressants in adolescence. I was quite depressed as an adolescent and there’s no question that had I been growing up today I would have been medicated too. It kind of creeps me out to think about it. Who would I be? Going through those depths and somehow fighting through it on my own is so much a part of who I am. Would the heights have been as high or the thoughts as consoling without the depths? It’s pointless to ask.

  24. realpc said,

    “those who proselytize against ever taking any are capable of doing great damage.”

    I said that the new drugs are better than lobotomies or chains. I said there are some patients who need them. But now they are given to people who are experiencing normal grief, or to anyone who wants to brighten their mood. The are addictive and no one knows what they really do to the brain. The brain is not at all well understood. The long term effects of the drugs are not known.

    It is drug company PR that has convinced most Americans that these drugs are safe and anyone who is a little down owes it to their self to get medicated. That PR is total BS. Only take the drugs if it’s either than or a lobotomy.

  25. realpc said,

    And statins are another example of drug company PR and BS. Don’t take statins. Improve your lifestyle, maybe take natural supplements. Do not have blind faith in your MD. Artery disease results from chronic inflammation and statins have an anti-inflammatory effect, so they have been shown to prevent heart attacks, to some extent. But at what price? No one knows.. Chronic inflammation is related to lifestyle. The long term effects of statins are not known.

    Address the cause of the chronic inflammation.

  26. amba12 said,

    I don’t think antidepressants are addictive per se. But they do probably modify the brain in unknown ways, e.g., the number of serotonin receptors could be downregulated when there’s more serotonin around. To think that they are so routinely given to adolescents — who tend to be emotionally volatile — and whose brains are still developing, is particularly creepy.

    Here’s a comment from someone with bipolar disorder who really needs medication:

    When I think about the possible long-term side effects of taking the SSRI meds for depression – the rest of my life, it is still preferable to living with my mind the way it was pre meds.

    I also read in time magazine last year, that continual usage of SSRIs, does effect the length between the serotonin synapses over time, making the SSRIs work harder to achieve the same [goal] – but it didn’t specify what the long term effects of that altered relationship would be if the meds were stopped. (Don’t plan on stopping them, so not too
    worried about it…)

    SSRI’s have been on the market for 20 years now. Now the long-term effects will start showing up in the die-hard users… We probably won’t know for another 10 years of any negative effects (i.e. brain damage) but I still maintain… Regardless of the mush my mind might turn into in another 30 years… it was worth it for me, to have all these years of trouble-free thought… I wouldn’t want to live without the ADs.

  27. amba12 said,

  28. realpc said,

    “I don’t think antidepressants are addictive per se. ”

    I know that some of them, Effexor for one, is very hard to quit. I was researching it because I wondered if my mother’s dementia could have been worsened by her being on anti-depressants for many years. The MD absolutely denied it of course. But her dementia is probably mostly from strokes, and she needs the Effexor, so I gave up on that. But I found in my research that it’s hell to get off Effexor. So you could call that addiction.

    I have known for a very long time that some mental patients, such as my mother, cannot live without the new anti-depressants. I think it was obvious I was talking about normal people, like Amba, who are being pressured to take them. Even people who aren’t so normal should try everything else first.

    I believe we are being brainwashed into thinking our medical industry has an answer for everything, but they really do not. We are mostly on our own, but of course we prefer to believe that the “experts” know how to take care of us. They don’t.

    Life hurts. You can’t experience life and its joys without hurting sometime. That is what modern people can’t accept.

    I don’t know what to say about that bipolar person. I think bipolar disorder is over-diagnosed, but maybe there really was no answer for her other than drugs. I am skeptical. If I wanted to let my negative thinking run free I could easily drive myself nuts and require drugs, just like my mother.

    But there are so many natural healthy things you can do to control negative thinking. I think everyone should try all those things first.

  29. Donna B. said,

    Hoss Piss!!! LOL

    I think that hospice would be a great thing for you.

    And it looks like my bad writing skills have triumphed again. I DO think anti-depressants are over-prescribed. Being “down” sometimes is not being depressed. However, they are not addictive in the classic sense that produce a high and a desire for more and more of the drug to retain a stable mood, much less a euphoric state.

    While our society is “afraid” to suffer a little psychic pain, perhaps… we are much more “afraid” of becoming addicted to something. Afraid, to the point of silly at times. A certain % of people are going to become addicted to some drug, alcohol if no other is available to them.

    realpc — don’t think that natural remedies are not drugs. Those that are not a drug, have no effect beyond placebo. Natural is not synonymous with harmless. And you can’t trust the manufacturers of natural supplements any more than you can “Big Pharma”. If you think of them as “Big Alternative” you’ll get a clearer picture.

    As for advice, it’s just as bad to say don’t take something as a RULE as it is to say always take it. Statins, for example. Cholesterol is not something that can be controlled well by diet and exercise. Some people naturally have sky-high cholesterol and without statins they will likely have a serious heart attack much sooner, no matter how “good” their lifestyle is.

  30. realpc said,

    “we are much more “afraid” of becoming addicted to something. ”

    That’s why they tell you the new drugs are not addictive, so you will not be afraid to take them. They create dependency, so by some definitions that would be an addiction.

    “don’t think that natural remedies are not drugs.”

    I have no interest in natural “remedies” and did not recommend any. I am talking about a sensible lifestyle.

    “Cholesterol is not something that can be controlled well by diet and exercise. Some people naturally have sky-high cholesterol and without statins they will likely have a serious heart attack”

    That is utterly and completely not true. You must believe the TV ads, or everything your MD says. The lifestyle American causes high cholesterol, along with chronic inflammation. You are so accustomed to this dangerous lifestyle you don’t even question it. You don’t even realize that cultures that don’t follow our lifestyle hardly ever get artery disease.

    You don’t understand anything about artery disease. It is not caused by high cholesterol, for one thing. Most artery disease results from type 2 diabetes, and chronic inflammation.

    It is completely wrong to say that diet and exercise don’t matter with respect to artery disease. You have been severely misinformed on this subject.

    Statins, to the extent that the prevent heart attacks and strokes, work by reducing inflammation, NOT because they lower cholesterol. There are much better ways to reduce inflammation than by ingesting an unnatural chemical with unknown long-term consequences.

  31. realpc said,

    There are rare exceptions, and some individuals have a genetic condition that causes high cholesterol and heart disease. Lifestyle might not matter for these patients, but there is NO reason for millions of Americans to be on a drug that should only be used on a small minority.

  32. huxley said,

    I am pretty anti-drug, and karate workouts are a very effective antidepressant for me. Why wouldn’t someone say “Great, more power to you”?

    amba: I’ll say it. Great, more power to you!

    I went through a bad patch twelve years ago — I truly was depressed — and I had everybody leaning on me to get on antidepressants. I didn’t and I’m glad I didn’t.

    I don’t look down on people who take them, and it seems so many of my peers do, but unless someone is really ready to commit suicide by next Tuesday, it’s worth looking into exercise, therapy, and whatever else, especially exercise.

  33. amba12 said,

    Especially exercise. Amen.

    It’s very hard to get moving when you’re depressed — I sometimes used to drag myself, or get myself dragged, to karate class — but if it’s good, vigorous and absorbing, it works like electroshock therapy without the memory loss. You can walk out of there a different person, in a different universe. And then you have to do it all over again. And it works again.

  34. realpc said,

    Lack of exercise is the worst thing for the brain, so of course there are many depressed Americans who think they need drugs. They go day after day, month after month, year after year, without moving their muscles, and don’t even realize it. Times just goes by and you don’t see that your lifestyle is abnormal. It seems normal when everyone else does the same thing. Decades of inactivity add up and eventually all kinds of problems result.

    Then doctors and drug companies tell us diet and exercise are often not enough to cure artery disease, depression, cancer, etc. Well no, decades of an unnatural lifestyle will not be overcome by a few months of spending a little time at the gym.

    And they test these drugs for a couple of years and declare there are no long-term bad effects. Or that there are bad effects but only for a small minority of patients. You get that reassuring paternal “i am the expert, I know what’s good for you” attitude. No wonder most Americans fall for it.

    It’s easier to take a pill, harder to recognize that your lifestyle has been all wrong for the past 30 years.

  35. Maxwell James said,

    I have an unusual history with antidepressants. I used them for roughly 2 months in the summer of 2002, during a period of rather intense misery. Whether it was the drugs or not, I will never know, but in those two months everything in my mind seemed to turn around. I then stopped taking the drugs and have never felt a need for them again. So I’m grateful for them, but I’m also grateful not to need them anymore.

  36. realpc said,

    However I do know a woman who runs every day and still sometimes feels a need for drugs. But she had put her teenage son on anti-depressants when her husband, his father, died. So I guess she is one of those people who thinks life should be painless. Life is going to be very sad sometimes, or stressful. It can be hard to make yourself do anything at those times. I think being an adult means being in charge of yourself and being able to tolerate a certain amount of pain, and being able to make yourself do things you don’t feel like doing, if necessary.

  37. realpc said,

    “Whether it was the drugs or not, I will never know, but in those two months everything in my mind seemed to turn around. ”

    So next time you feel very unhappy you may try the drugs again. I think they have done research showing that exercise was as good as drugs for depression — so why wouldn’t you try lifestyle changes first? It may have been a coincidence that you got better while taking drugs. Or maybe they did help. But shouldn’t you try simpler and safer things first?

    As I said, some people need the drugs. But they should not be used for normal grief — as horrible as it feels, it’s something we have to go through. And they should not be used to brighten up your life — there are better more sensible ways.

  38. Donna B. said,

    “Then doctors and drug companies tell us diet and exercise are often not enough to cure artery disease, depression, cancer, etc. ” –realpc

    Cancer???????? oh, please.

    I apologize for saying you recommended natural remedies — what you wrote was natural supplements, but I’m not sure I actually understand the difference as natural remedies are generally sold as supplements — or they would require a prescription or some proof of the effect they claim. Perhaps you could explain how natural supplements are different from natural remedies. And perhaps you can explain why vitamins that aren’t billed as “natural” are not as good.

    Statins are over-prescribed. Most drugs (except narcotic pain-killers) are probably over-prescribed. But your rather stoic insistence that all should suffer is a bit over the top too.

    You are screaming as loudly as the person saying “Get the anti-depressant!” Your knowledge is certainly no greater than mine and quite likely a lot less. All your repetitions of “chronic inflammation” lead me to wonder whether you’ve fallen for some powerful woo.

  39. Melinda said,

    >And then I thought, maybe they ought to have a special, nonterminal branch
    >of this service called “Hoss Piss.”

    And then you wouldn’t have to Hop Sing as much.

  40. realpc said,

    “But your rather stoic insistence that all should suffer is a bit over the top too.”

    You just aren’t understanding anything I say. I’m sure it was obvious that I meant that life involves a certain amount of unavoidable suffering, and that dulling your feelings with drugs is not healthy or reasonable.

    Regarding cancer — it is known and accepted that chronic inflammation, resulting from the unhealthy typical modern lifestyle, is a major contributer to type 2 diabetes, artery disease, and cancer. No, you can’t cure cancer by fixing your lifestyle but you would be much less likely to get it in the first place.

    “Your knowledge is certainly no greater than mine and quite likely a lot less.”

    I don’t know why you’re trying to measure who has more knowledge. MDs have a lot of knowledge, but that just makes them more likely to buy the pro-drug mythology.

    Your use of the word “woo” is a pretty sure sign that you are opposed to holistic medicine.

  41. Donna B. said,

    “Regarding cancer — it is known and accepted that chronic inflammation, resulting from the unhealthy typical modern lifestyle, is a major contributer to type 2 diabetes, artery disease, and cancer. No, you can’t cure cancer by fixing your lifestyle but you would be much less likely to get it in the first place.” — realpc

    For one thing, it is not known and accepted that chronic inflammation is the result of any particular lifestyle and the “typical” modern lifestyle is not proven unhealthy. What you eat or how much you exercise may, or may not, prevent, lessen, or eliminate inflammation.

    Whether inflammation becomes chronic depends on quite a few factors and eliminating inflammation or reducing it too much could have adverse effects on other aspects of the immune system.

    Most of the association of chronic inflammation with cancer occurs when and WHERE infection repeatedly occurs or is not treated and it’s also associated with specific viral or bacterial agents.

    The best “lifestyle” change to prevent several of these cancers is to get vaccinations against HPV, Hep B, etc. Or never have sex except with only one person who you know has never had sex before and has never used a dirty needle or been to certain VA medical centers.

    I’m not opposed to the concept of holistic medicine (except for those that include a spiritual portion – ie, 7th Day Adventists and Scientology). Do not doctors look at the whole patient during a physical exam? Ears, eyes, nose, neck, lungs, heart, abdomen, reflexes… etc. Do you think they don’t consider how those items are connected? If they find a problem with one part, they try to treat it before it spreads to other areas, don’t they?

    Don’t regular MDs tell their patients to eat right and exercise? Don’t they give them advice on how to do so?

    I certainly agree that there are areas where regular medicine over-treats. We’ve already agreed that statins and anti-depressants are over-prescribed. Bariatric surgery for weight loss is also over-prescribed.

    But on the “woo” side, naturopaths, accupuncturists, homeopaths, chiropractors, et al are also over-prescribing placebos, colon cleansing, chelation, and (ironically) metals such as zinc. While most of these do no harm except to your pocketbook (same as a lot of regular medicine will) when they replace regular medicine some people will die from lack of treatment of an easily treated disease.

    Chronic inflammation is a fact of life because we have an immune system. Sometimes the immune system acts up and cancer may be the ultimate result, but it’s far more likely to be something else much sooner, such as muscular dystrophy.

    I read some time ago about a treatment that prevented type II diabetes in rats — it involved removing macrophages which, as part of the immune system, cause inflammation. Which would be worse, an impaired immune system or type II diabetes?

    As for not understanding what you meant, I think I did. I simply disagree that suffering is always healthy and reasonable. Some suffering, in fact, may result in chronic inflammation.

  42. realpc said,

    No you don’t understand how the modern lifestyle is related to chronic inflammation and how that is related to artery disease, type 2 diabetes and cancer. A lot of this is now accepted in mainstream medicine. You don’t understand the difference between holistic and mainstream medicine. Mainstream medicine has finally accepted some of the ideas about prevention and lifestyle, but its basic approach is still different. When you give a patient statins to lower cholesterol because cholesterol is involved in artery disease, that is not holistic. That is looking at one variable and ignoring other relevant variables and the system as a whole — that is the reductionist approach. It is known that artery disease involves the immune system and chronic inflammation — that does not mean you should disable the immune system, it means the immune system is malfunctioning. And it’s malfunctioning because the patients’ body has been abused by the modern lifestyle for decades.

  43. Rod said,

    Amba: Somewhere this thread went far afield from the choices a caregiver must make (which is OK). As you note, hospice care is not just for people within 30 days of meeting the Grim Reaper anymore. Home hospice care is available for people who have a terminal condition without much regard for how far out the terminus is.

    Be aware that different hospices have different philosophies. I discovered that when my mother-in-law was dieing. The doctors were washing their hands and saying there was nothing more they could do. We wanted to bring her home and discussed this with the hospice people. The first group we spoke with made it clear they would treat pain, but they would do nothing, however simple, to prolong life. They were there to get it over with.

    Medical professionals use callous terms when they discuss the dieing. The phrase I heard was, “circling the drain.” Be careful to select someone who will help you sustain life, not just facilitate death.

  44. amba12 said,

    *wince*

    One hears mostly good things about hospice.

  45. amba12 said,

    Hospice is not really what we need, though. We need some sort of benefit that provides even limited assistance with routine personal care of a helpless person. Consider that if I ever wish to go out for dinner, to a movie, for a walk, it costs me an additional $45 to $60 every time, and that’s on a tight leash time-wise. Result: I hardly ever do it. Nothing seems important enough to justify the fast-building expense, except twice-a-year visits to my parents. (I do have one or two volunteers from the karate school who can be called on occasionally, not regularly, for a few hours.) Plus, I am doing all the pulling and hauling of a large person, day in and day out, which, despite back-sparing techniques and wonderfully designed gadgets, is a cumulative and unrelenting strain.

    If I were not paying off debt, which is a whole backstory in itself that I won’t go into here, I could afford help. Someone suggested I file for Chapter 7 bankruptcy — one year away from completing a debt management program — in order to have access to all of my own income. It seems a pity to have come this far only to live the rest of my life with that blot on my record. On the other hand, maybe that’s overoptimistic of me — it’s silly to cut short the rest of my life for that reason.

    Who knows.

  46. david said,

    I’d look into hospice. He may not be “ready,” but may still qualify. I don’t relish the thought of him being there, but the thought of you winding up there, or worse, as a result of the relentless demands of his condition, is horrifying.

  47. Randy said,

    It certainly won’t hurt to find out what type of assistance is provided by in-home hospice care. It sounds like the M.D. is willing to certify J.’s eligibility (a big hurdle) and that he has already clued you in to the fact that hospice care can be withdrawn if providers conclude after some time passes that J. is no longer eligible. (And be started again if his condition deteriorates.) Let the recommendation go forward and then you will find out exactly what they will or won’t do.

  48. realpc said,

    You should definitely look into this, so you can start to have some freedom. You should be able to visit your parents, and other relatives, more often. If nothing else, getting outside more often would probably make a big difference. I think you should take whatever help is available.

  49. Rod said,

    The home hospice care that Medicare supports involves providing a bed, oxygen if needed, and a professional medical assistant to visit once or twice a week. There are people in your community who are capable of watching and assisting with physical needs. Sometimes nurses will do some of this on the side. If you negotiate a regular weekly evening of say, four hours, you might beable to get a price a little below $10 per hour. Medicare does not provide for that. I recall that a hospice program I spoke with had allowed coverage for an occassional “day off” for caregivers, but I cannot recall how often it was provided, and I have no idea whether this was a standard (i.e., government subsidized) benefit.

  50. amba12 said,

    Thanks for that warning. I gather it also varies from state to state, like almost everything else, including VA benefits, which I also need to look into. I was told in the past that at J’s age they are basically the same as Medicare benefits, but I was in NY then.

  51. Donna B. said,

    VA benefits vary so much, it’s hard to determine what they are. Is there any way any of his problems could be service-connected?

    In addition to the services that Rod mentioned, when my 2nd step-mom was dying of cancer, her Medicare-paid hospice included bathroom equipment that didn’t have to be permanently installed, all medications including set-up in a timed dispenser, 2x week scheduled visits by a nurse, and a 24/7 emergency number.

    The nurses were fantastic. They came out several times on weekends or in the evenings, and the one we called the Sunday morning before my step-mom died, recognized (when we did not) that the end was very near and she did not leave for well over 24 hours. She was a true angel.

    From stories I’ve heard since, maybe we just got lucky.

    BUT…because my step-siblings had the money, they paid for home-health agency aides to come to the house daily. They did not want her in a nursing home and did not want my Dad to be physically tied down caring for her. THIS IS WHAT YOU NEED! And I don’t know how to get it for you other than buy you a lottery ticket!! Dammit.

  52. amba12 said,

    Well, I can make a video audition to try out for “Who Wants to Be a Millionaire” . . . LOL.

  53. Rod said,

    Where is “Queen for a Day” when you need it?

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