 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Alzheimer's / January 2004Dad - Refusing to see a neurologist. Update and Rant
Back in early-mid December, my father's new doctor recommended (on the phone, to me, not directly to my father), after finding nothing with the head MRI to explain his memory problems, that he go to a neurologist. Dad was clearly not wanting to deal with it at the time, and with the holidays, my having a friend visiting, and first my father and then me coming down with a cold, I didn't press the issue. Until yesterday. Dad was due for his monthly B-12 shot, and I told him again that the doctor had recommended he see a neurologist, and I asked him to ask the doctor about this if he had any questions, but told him we need to go ahead and make the appointment. My father flat-out refused to consider seeing the neurologist. He says he thinks his only problem is the pernicious anemia and that he 'wants to give the B-12 a chance to work.' When I pointed out examples of recurring memory failings that happened within a week of him getting his last shot, when its effects should've been strongest, he insisted it was just because that was the first shot he'd had in two months (this wasn't true, but he just pounded the floor with his cane and glared at me and refused to acknowledge it). When I pointed out that his last physician made a referral to a neurologist six months ago, he said that it was because I had told the doctor things that weren't true, namely that I 'got on him' about having sleep apnea (the doc also made referrals to a sleep clinic), claiming that I was imagining his sleep problems when I heard him get up in the night and gargle with mouthwash (again, no acknowledgement when I put the matter straight). When I repeated that he now has two physicians who both agree (and that the rest of the family agrees, too) that he needs to see a neurologist, he grumbled that the new doctor (whom he up to now has thought very good) wasn't doing so well because he gets Dad's name wrong on his prescriptions (in fact, the pharmacy made a typo on his prescriptions - I corrected them last time I had them filled - and to make it funny, Dad has mispronounced his doctor's name consistently for the past two-and-a-half months!). He seemed close to accusing me of just making up his memory lapses for some mysterious reason - I think the only thing that stopped him was that I interrupted to tell him to call his sister or daughter, that they would say the same thing (again, no acknowledgment of that). He kept saying he would bring it up the next time he had a regular doctor's appointment - *then* he would let me tell the doctor what I thought was wrong. I reminded him that I had already told the doctor what I was seeing - and this was the doc's response. His answer was that the doctor had not told *him* that he had to see a neurologist; I asked if he'd asked him, and he admitted he hadn't. I asked if he *would* ask, ask the nurse to ask the doctor; he grudgingly agreed. But he wouldn't agree to me going with him, to talk to the nurse or doctor with him (until 'next time' - which could be months away). I did phone the nurse, who has seemed helpful and understanding, and she promised to make a note and bring it up if he didn't. He was so angry throughout this his hands were trembling (more than usual), and he would not look me in the eye during the entire conversation. But after the visit for the shot, he is just refusing to address it. Once home, he planted himself in front of the TV, glued to VH-1 and 'Before They Were Rock Stars' for two hours before going to bed. His attitude made it clear if I pushed we'd just get a replay of the earlier argument, and he would still refuse. I am really at a loss over what to do next. I've spoken to my sister, who said she'll try talking to him as well, but shared my pessimism about being able to persuade him. I'll try talking to my father's sister, but doubt she will sway him either, especially if he feels he is being ganged up on, and after he's committed himself to the position that his only problem is his B-12 deficiency (he is not one to like to admit he is wrong about anything). I was considering today using a 'loving deception,' as so often advocated here: if his doctor or the nurse will go along, tell Dad that, having found *something* on the CAT scan in November, he is required to have a follow-up neurologist visit to keep his health coverage. But I think that the likely reaction to that would be either A) he will see it for the trick it is, since he is relatively lucid most of the time and it requires him remaining fooled perhaps for a couple of weeks; or B) he will react as he reacted when his last doctor pushed referrals that Dad had set his mind against: he will just refuse and will stop going to the doctor at all, even for the essential B-12 shot. We're literally at a point where I think trying to trick or cajole or bully him into seeing a doctor about this will just make him dig in his heels and refuse to go to the doctor at all. I really am not seeing anything I can do to get him help, beyond just waiting for his dementia to worsen to the point of it causing some disaster - forgetting to pay his bills or taxes (and frankly, I don't think even that would do it), something worse like him getting lost, or reaching the point of forgetting names of immediate family members. I hate the thought of waiting until he is thoroughly legally incompetent to get help, until he's too feeble-minded to protest. Pig-headedness runs in the family. In combination with denial and a fragile pride, it's damn' near an immovable object. How do we get past this? <sigh> -- Robert Robert, He can't work a TV remote how can he decide on his health care? You haven't really tried using loving deceptions yet but he might be relieved if someone else is making the decisions. Can the Dr/nurse write out a "prescription" for a neuro consult and forget to give it to him til he's in the outer office with you and just hand it to you. You have to try! Reality Sets In by Mary Gordon http://www.muggsmulcher.com/kstuff/a.s.a/articles/mary.htm#realit y -- Mare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages > Back in early-mid December, my father's new doctor recommended (on the > phone, to me, not directly to my father), after finding nothing with the [quoted text clipped - 89 lines] > -- > Robert > Robert, > He can't work a TV remote how can he decide on his health care? You describe the problem well. *Usually,* my father *can* work the TV remote control. On occasion (three or four times a week, perhaps) he gets confused and forgets... but at this point, he does eventually work it out and get to the channel he wants, without my intervening. I think it would be a great stretch to say that he's incompetent to select his television viewing at this point, though his ability to execute what he wants is muddle somewhat, and his initiative in choosing the full breadth of his television viewing options is impaired. Furthermore, my father's personna is such that if I were to intervene when I saw him mucking about, confused by the remote, he'd more likely feign disinterest in watching TV at all than to be reliveved I was selecting his channels for him. I mentioned that he spent two hours watching a show about rock stars (that I'm sure interested him not at all) yesterday when he was agitated and trying to find a focus to avoid the big argument issue of earlier in the day; he did try at one point to call up the menu, and actually got farther off course than usual with the remote. But he would have denied it and been angry if I had offered to take over and plug him in to the channels he probably wanted. > You haven't really tried using loving deceptions yet but he might be > relieved if someone else is making the decisions. Well, I have, on a limited basis. For example, he was doing his common foot-dragging about his B-12 shot a month ago, mentioning several times that he was going to call about it and then forgetting. So I finally phoned without asking him, then when he was startled by the pharmacy calling (while I was out, so he answered) to say the B-12 ampule was ready, I just told him I'd called - and that I had told him I called. There have been a few other instances. He let that go without more than a skeptical/confused glance. But it was a minor issue, and for someone to quietly be relieved that someone else is making 'necessary' decisions, he either has to recognize and accept at some level that his own decision-making capabilities is impaired, or to be so far gone that the idea that he should be making his own decisions (and knowing he's made them) isn't automatic. My father isn't at that point yet - that's the crux of the problem. >Can the Dr/nurse write out a "prescription" for a neuro consult and > forget to give it to him til he's in the outer office with you and just > hand it to you. You have to try! I could... IF my father accepted and/or agreed that the prescription for a neuro consult was needed. But he's still cognizant enough to believe he is judging his memory deficit accurately, and isn't surrendering that automatically on the basis of the doctor's say-so, to me or him or anyone. Case in point - his doctor's referrals six months ago to a sleep clinic and a neurologist. Dad's comprehension of the neuro referral became confused (he forgot and then re-remembered it as a referral to a cardiologist). But his memory of the sleep clinic referral has remained intact to this day... but he disagreed with it. He didn't forget, he didn't confabulated - he had a clear understanding that his doctor thought he should go to the sleep clinic. But he disagreed with that diagnosis (because he confabulated a scenario for the reasons I was suspecting he had sleep apnea), and he managed to remember his reasons (indeed, to cement them in place as accurate), and so he simply refused to go along with the doctor's referral. That's the problem with a 'loving deception' scenario - having us all pretend that him going to a nerologist is just the normal next step requires having him forget that he's decided it's not necessary - and unfortunately(?!) he's not at a level yet where we can count on him not to remember his (skewed by his dementia) decision that he is going to disagree with his doctor. -- Robert Hey Robert, I just want to start off by saying my reply's are all meant with much sympathy and understanding since I've been thru it a couple of times. Most of what you are saying brings back so many memories of my Mom and what we went thru in the "early" days. She was so horrible at the time, so was my understanding of what was going on. I also had to do, what I thought at the time, were reprehensible things when my uncle was diagnosed altho I'm still not convinced it's just AD. I think it might be LB or Korsakof's(alcohol). I guess I'm hoping to save you and your Dad from alot of the heartbreak and problems I encountered. Denial and acceptance were *very* hard for me. I'm a solution oriented person and I thought there must be solutions, unfortunately the solutions were things I really didn't like doing but in the end were the right choices. If you don't do something soon, both of you are going to suffer more. Your Dad could be helped so much by the medications available now. The combination of Aricept and Mementine has yielded such great results that if my Mom were not in late 7th stage I might give it a shot so she could retain more of herself until she passed from something else. Why wait til a later stage when he has already lost more ability and needs more of your supervision and help. Detrimental to both of you IMHO. Yes I know you think he won't stand for any interference but neither did my Mom. I was so stressed and upset at trying to help her and I couldn't fathom any deceit or "end running" her. I do understand. BUT she probably would not be so far gone if I had done those things as early as possible. If I had believed those that have gone before me and used my imagination things for her and me would be so much different. I truly believe that. Yes some people are harder than others, some caregivers are harder to convince than others but in the end it REALLY and TRULY is best for all to get things taken care of and started as soon as possible. His *reasoner* IS broken. I bet he has more trouble with the TV remote than you really know(said in retrospect about my Mom). The amount of covering she did was staggering when I thought about it later. Experience is a wonderful thing of course this subject just stinks. So I think people will continue to suggest things to help you get your Dad diagnosed, you might want to try a few things just to make sure in your mind that you did try everything possible. Alot of what you say is that he wouldn't stand for it and that might be true to a certain extent but you should try just so that in a few years you don't regret not trying things earlier. It's hard to change the roles we have grown up with but for both your sakes give it a shot. Then try it or something else in a few weeks. Many things I tried for Mom didn't work the first time but I refined the idea by seeing her reactions and they worked in the future. It's a learning process and I wish you well while you are learning. -- Mare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages Robert, with or without your father's permission, you need to go with him to his doctors' appointments and go in with him to see the doctor. You need to know what the doc says and also what your dad is telling him. You need to make the plans and then see that he follows through by being with him all the time at appointments. This is going to be hard to do but is necessary if he is going to get any help at all. Right now he has you buffaloed and he knows it. Won't be easy, but you will have to take control. I know that's easy for me to say, but I think you are just boxing with shadows unless you are able to do this. Sorry to be so blunt. Gwen ======================================================================= If you haven't got all the things you want, be grateful for the things you don't have that you don't want. ======================================================================= | Back in early-mid December, my father's new doctor recommended (on the | phone, to me, not directly to my father), after finding nothing with the | head MRI to explain his memory problems, that he go to a neurologist. Dad | was clearly not wanting to deal with it at the time, and with the holidays, | my having a friend visiting, and first my father and then me coming down | with a cold, I didn't press the issue. | | Until yesterday. Dad was due for his monthly B-12 shot, and I told him | again that the doctor had recommended he see a neurologist, and I asked him | to ask the doctor about this if he had any questions, but told him we need | to go ahead and make the appointment. | | My father flat-out refused to consider seeing the neurologist. He says he | thinks his only problem is the pernicious anemia and that he 'wants to give | the B-12 a chance to work.' When I pointed out examples of recurring memory | failings that happened within a week of him getting his last shot, when its | effects should've been strongest, he insisted it was just because that was | the first shot he'd had in two months (this wasn't true, but he just pounded | the floor with his cane and glared at me and refused to acknowledge it). | | When I pointed out that his last physician made a referral to a neurologist | six months ago, he said that it was because I had told the doctor things | that weren't true, namely that I 'got on him' about having sleep apnea (the | doc also made referrals to a sleep clinic), claiming that I was imagining | his sleep problems when I heard him get up in the night and gargle with | mouthwash (again, no acknowledgement when I put the matter straight). | | When I repeated that he now has two physicians who both agree (and that the | rest of the family agrees, too) that he needs to see a neurologist, he | grumbled that the new doctor (whom he up to now has thought very good) | wasn't doing so well because he gets Dad's name wrong on his prescriptions | (in fact, the pharmacy made a typo on his prescriptions - I corrected them | last time I had them filled - and to make it funny, Dad has mispronounced | his doctor's name consistently for the past two-and-a-half months!). He | seemed close to accusing me of just making up his memory lapses for some | mysterious reason - I think the only thing that stopped him was that I | interrupted to tell him to call his sister or daughter, that they would say | the same thing (again, no acknowledgment of that). | | He kept saying he would bring it up the next time he had a regular doctor's | appointment - *then* he would let me tell the doctor what I thought was | wrong. I reminded him that I had already told the doctor what I was seeing - | and this was the doc's response. His answer was that the doctor had not | told *him* that he had to see a neurologist; I asked if he'd asked him, and | he admitted he hadn't. I asked if he *would* ask, ask the nurse to ask the | doctor; he grudgingly agreed. But he wouldn't agree to me going with him, | to talk to the nurse or doctor with him (until 'next time' - which could be | months away). I did phone the nurse, who has seemed helpful and | understanding, and she promised to make a note and bring it up if he didn't. | He was so angry throughout this his hands were trembling (more than usual), | and he would not look me in the eye during the entire conversation. | | But after the visit for the shot, he is just refusing to address it. Once | home, he planted himself in front of the TV, glued to VH-1 and 'Before They | Were Rock Stars' for two hours before going to bed. His attitude made it | clear if I pushed we'd just get a replay of the earlier argument, and he | would still refuse. | | I am really at a loss over what to do next. I've spoken to my sister, who | said she'll try talking to him as well, but shared my pessimism about being | able to persuade him. I'll try talking to my father's sister, but doubt she | will sway him either, especially if he feels he is being ganged up on, and | after he's committed himself to the position that his only problem is his | B-12 deficiency (he is not one to like to admit he is wrong about anything). | | I was considering today using a 'loving deception,' as so often advocated | here: if his doctor or the nurse will go along, tell Dad that, having found | *something* on the CAT scan in November, he is required to have a follow-up | neurologist visit to keep his health coverage. But I think that the likely | reaction to that would be either A) he will see it for the trick it is, | since he is relatively lucid most of the time and it requires him remaining | fooled perhaps for a couple of weeks; or B) he will react as he reacted when | his last doctor pushed referrals that Dad had set his mind against: he will | just refuse and will stop going to the doctor at all, even for the essential | B-12 shot. | | We're literally at a point where I think trying to trick or cajole or bully | him into seeing a doctor about this will just make him dig in his heels and | refuse to go to the doctor at all. I really am not seeing anything I can do | to get him help, beyond just waiting for his dementia to worsen to the point | of it causing some disaster - forgetting to pay his bills or taxes (and | frankly, I don't think even that would do it), something worse like him | getting lost, or reaching the point of forgetting names of immediate family | members. I hate the thought of waiting until he is thoroughly legally | incompetent to get help, until he's too feeble-minded to protest. | | Pig-headedness runs in the family. In combination with denial and a fragile | pride, it's damn' near an immovable object. How do we get past this? | | <sigh> | | -- | Robert | | | > Robert, with or without your father's permission, you need to go with him > to his doctors' appointments and go in with him to see the doctor. You > need to know what the doc says and also what your dad is telling him. You > need to make the plans and then see that he follows through by being with > him all the time at appointments. So far, I do know what the doctor is saying, and (generally) what my father is saying to the doctor. I've been talking either to the doctor or the chief nurse in the office, and they've been understanding and informative. I know what he's saying because Dad's still cogent enough to continue his old habit of writing a memo to his doctor (on his computer) at each visit, and I've read them. But the simple reality is that if I had insisted on going in at his side through his visit yesterday for the B-12 shot, I have no doubt he would have refused to go. And if he doesn't go at all, he doesn't get some treatments that may in fact be a substantial part of his dementia. I did try the not-telling-him -in-advance approach last summer: He was apparently only remembering (and canceling) the sleep clinic referrals, so when I renewed his neurolgist referral (which he'd cancelled when they called to remind him of it), I didn't tell him; I planned to tell him about it and say it was too late to cancel. You know what? He had the mental wherewithal to call his primary physician's office and tell *her* to stop making the referrals (he told her we were busy with repairing some (in reality minor) storm damage). By the time that neuro appointment came up, we were already switching health plans and primary docs, so he didn't go. But I really don't think he is yet complacent enough and hasn't yet surrendered his (flawed) judgment to the point that I can count on him forgetting that he is refusing to see a neurologist. That's my problem. Maybe in three or four or six months he will have deteriorated to the point that if I announce authoritatively to him one morning that he has a doctor's appointment in an hour, he will complacently agree because the dementia will have outlasted the stubborness and contrary belief. But he's not there yet. Boxing at shadows is an apt analogy - but what I feel like is the employer-lawyer-narrator in Melville's 'Bartleby the Scrivener,' faced with someone who simply says 'I prefer not to' and then doesn't. Or like an administrator of the British Raj in India faced Gandhi's passive resistance. The reversal of parent-child roles between my father and myself has not yet reached the point wher I can get him to do what I want simply by asserting the authority to do so. Does he have to become so child-like in his incapacity that things work that way before he will get help? I have been hoping, all this time, that we would be able to get him help before it reached that stage. That's my despair - that, for all the expert advice on the importance of getting dementia treated as early as possible to forestall its effects, there's a minimal level of incapacity before compliance is possible in the unwilling AD sufferer, and that I can't make him willing to deal with it, and have to just wait and watch him decline to the point he's complacent enough to do what he's told. -- Robert Does he have to become so child-like in his > incapacity that things work that way before he will get help? I can't make him willing to > deal with it, and have to just wait and watch him decline to the point he's > complacent enough to do what he's told. Robert, I really feel for you. I know what you are going through. I realized it myself when I read on this newsgroup's website this morning, the post Mary Gordon wrote to me back in 2001. We went through it too, and it was without a doubt, the HARDEST part. Dealing with incontinence and these later issues are a breeze compared with the stage your dad is in. I am sorry to say that what others have said is correct. He has you buffaloed and you are not tough enough, adamant enough, to really give him a hard time about it. His adamance is based on fear. He is AFRAID of what proper diagnostics might reveal. You are used to being the "son" who obeys, and him the "father" whom you respect and follow his lead. It isn't the same game plan anymore. It is a reversal of the lifelong natural order of things and it won't come easy. The way I see it, is that we DID have it somewhat easier in that my mother in law is a woman and my husband, her son, is a man. Somehow ladies of her generation would listen to a man who got angry with her more readily. When Peter raised his voice and told her she MUST do this or that, she did it. The toughest of all was the first bath (aaarrgghhh!) getting her to go to the medical appointments, or to come here to us, was not nearly as bad as that one was. Robert you have two possible ways of dealing with this. Scenario 1 - Corner him, press the issue hard, and let him rant and rave and get mad as he wants, but stick to your guns and literally have a blazing argument with him in which you INSIST that he has got to deal with his medical issues or ELSE you will drag him bodily there and let the fight go on for days on end if you have to. Let him shake and holler and carry on and get all bristly if that is what he wants to do. I predict that he will reach a point where he HIMSELF will want the argument to end, and he will acquiesce and realize you have his best interest at heart. He is AFRAID and you need to tell him that fear won't cure him and denial won't either. Tell him you are insisting on dealing with this NOW because there ARE medical issues that are TREATABLE causes of these memory problems and that dragging his feet about getting a diagnosis will just make it worse. Enlist the help of anyone you can think of to participate in this game plan. Use the old Good-cop, Bad cop scenario if you have to. Be tough about it, and don't let the issue drop for a single minute until he realizes that you mean business and that you are NOT going to let it slide anymore and that you won't take NO for an answer. Scenario 2- Sit back and let him get worse. But be aware that if you take this course of action, his resolve at bucking you will also become set in cement. You may never get past it, and he may fight you on medication, doctor appointments, any sort of care he needs FOREVER, because his illness progressed and he was always able to get his way by just digging in his heels and staying in denial in the past, so he will do it again and again and he will refuse to take his meds, refuse to do whatever, because he has done so all along and never had to give in. In my opinion this is the worse way, and a lot of people end up in nursing homes sooner than they need to be because no one wanted to face them down on these issues. Meanwhile, as some coping mechanisms; You might want to get one of those little tape recorders that you can put in your pocket, and record your fathers agreement to go in the doctors office,...... also to record the doctor's recommendations, although getting them on a prescription pad as some have suggested, is just as good. Mark well on a BIG new wall calendar when he is due to get his B-12 shots, so he can't use that nonsense again. Mark ALL medical appointments together on that calendar so he can't lie about it. Hang that calendar in a conspicuous place in his home so there will be no nonsense. Can you get someone else to come in to your home and start THE BIG ARGUMENT so you can play the "good cop" if you need to? Someone is going to have to read that man the riot act. He is neglecting his health and his proper treatment out of fear and tying the one person's hands that could help him.  SignatureEvelyn (To reply to me personally, remove sox) Robert, I sure have sympathy for you and your situation. The (ethical? moral?) dilemma you are facing is similar to one we faced with my mother a couple of months ago when she decided she wasn't going to take her meds any more. "What am I supposed to do," I thought, "force them down her throat?" I have a slightly different approach to suggest than some of the others who have written in, just in case this might work (probably not, but it's worth a try...) I assume your objective is to get your dad diagnosed NOW so that you can begin treatment with perhaps some of the Alzheimers drugs that are out on the market now, if that is what your dad has. Several years ago, when it became very apparent that my mother was having memory problems and her mind was getting worse, I saw an ad in the newspaper for Aricept. My mother is pretty "old school" - doesn't like to take drugs, will ignore pain or live with it, claiming that she doesn't need to go to the doctor, etc. Previously, I had tried to get her to go for an MRI or CAT scan, or whatever test it is that can "see" whether the brain has experienced one or more strokes, even small ones. She agreed, only to obstinately back out at the last minute in a tone of voice that made me realize it was useless to argue, logic and reason were going to get me nowhere. When I saw the Aricept ad, I made an appeal to the "mother" in her, and asked if she would try Aricept "for me". We never talked about Alzheimers, we just talked about "memory problems" and how I thought this medicine could at least help keep her memory from getting worse. The memory problems WERE bothering her. She said she'd go to the doctor and see if she could get a prescription for Aricept "just for me". I went with her to the doctor and her GP "diagnosed" her, after eliminating other causes such as vitamin deficiencies, etc. The doctor did blood work, etc and the other possible causes of memory problems came up negative. She administered the Mini Mental Status Exam (or whatever that thing is) and my Mom showed impairment equivalent to "mild" Alzheimers or dementia. Since your Dad already has a doctor, couldn't this doctor diagnose your Dad, or does the doctor not feel qualified? My mother never saw a neurologist, nor was it ever recommended that she see one. - Jennie > > Robert, with or without your father's permission, you need to go with > him [quoted text clipped - 52 lines] > -- > Robert Jennie, I just smacked my head because I always used the "do it for me please". It worked very well for my Mom. Glad you brought it up. -- Mare mfcoleman@THEOLEmindspring.com http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm alt.support.alzheimers' FAQs and Stuff Pages > Robert, > [quoted text clipped - 114 lines] > > -- > > Robert > Robert, with or without your father's permission, you need to go with him > to his doctors' appointments and go in with him to see the doctor. You [quoted text clipped - 5 lines] > control. I know that's easy for me to say, but I think you are just boxing > with shadows unless you are able to do this. Sorry to be so blunt. well, i've sort of said it, but gwen really hit it on the head! your father might object, but you really do have start doing some things he doesn't like, even if he gives you a really bad time. this is what i had to do with my mom --- simply go in to her doc visits with her (leaving for a few minutes if she had to disrobe for an exam). i even took notes on what the doc said, and also got the doc and nurse to write their instructions on prescription pads, handing the pink 2nd copy from the pad to me. Robert, I basically agree with Gwen, he has to go for the MD appointments. Having been somewhere along your road-and looking back----there's no way he is ever going to agree with you, the family, or the docs. As hard as it is, and I know how you feel-give up asking his permission and approval- and go from there. Believe me, you'll save yourself a lot of emotional energy. I also know this is something you have to go thru yourself to figure it out. He just might want it to be taken care of, but I doubt that he will admit that to himself or you- so don't belabor the point. Make the appointment and take him...blame it on the primary MD if you have to ("They set up the appt. for you, isn't that nice?") I'd advise not to prepare him at all, just take him. If he is absolutely awful and you don't get there-make another appointment and repeat. You can warn the office staff there might be a scene-they've dealt with it before. Don't argue or try and reason with him. A matter-of-fact BRIEF statement if necessary, but don't get drawn into an argument. Proceed as if he's agreed...sometimes the fiblet that he did agree and you're just following up might be appropriate-but if his resistance is as strong as you indicate, that's probably not the best option. I'd also have a written summary of his behaviors to the MDs office before the appointment so you don't have to talk so much in front of him. This is very wrenching-no way about it. But you can do it---just forget about getting your Dad's approval-because you're not . It does get easier eventually, sadly. Keep us posted. Beth > I am really at a loss over what to do next. 1. make the appointment for him. 2. get him in the car on whatever pretense in time to get him to the appointment a little early. 3. simply tell him, when you arrive at the neurologists, that he made the appointment, that he's forgotten, as he so often does, and that the doctor is expecting him NOW. you simply have to bite the bullet and become the parent. i know that it's hard, but you have to do it. if you have to use loving deception, you have to do it. you have to do whatever you have to do to get him the care he needs, even if his non-functional brain tells him that he doesn't want to do it. it will be the most difficult thing you can do, but you must do it. if this stubborness continues, you need to start researching how to declare him incompetent and have a guardian or conservator appointed, especially if he still refuses to sign POA and the family all agrees that he's no longer competent. If the doctor feels he should see a neurologist, tell the doctor to go ahead and make an appointment, and if you feel you HAVE to tell your father, make the doctor the bad guy. Let the doctors office inform your father that he has an appointment on such and such a date and let your dad argue with the doctor - if your doctor is any kind of responsible health care provider, he will be insistant. Talk to his doctor about your father's reluctance. Perhaps the doctor can help - maybe he can pretend to send him to have something about the B12 checked out. First hurdle is getting an appointment set up - and don't let your father drive the boat on that one. Get an appointment and then figure out how to get him there - and don't waste time arguing and going over it endlessly, and reminding him about it - you are contributing to the problem. Mary G I have read all these posts and I agree that you have to "take the bull by the horns" so to speak. I know this is what you have to do with a mind that can no longer reason. But I have to say that there will be exceptions. My dad would have been one. He was a retired military officer and NOBODY told him what to do unless they outranked him. He would NEVER give in to something he didn't want to do. To him it involved a twisted sence of honor and manhood. I dont know what one would do with somebody like him. Thank goodness his body failed before his mind did. Kay > I have read all these posts and I agree that you have to "take the > bull by the horns" so to speak. I know this is what you have to do [quoted text clipped - 6 lines] > failed before his mind did. > Kay My father is the same way. I have absolutely NO idea how my siblings and I will ever begin to manage if he gets Alzheimers or any other form of dementia. He was violent, abusive, difficult, fiercely independent, narcissistic, stubborn and controlling for all his life, and he wouldn't be above getting physically violent if he thought he was being railroaded, and you know how paranoid dementia can make people! I really believe that there are some personalities that are better off handled by professionals because of characteristics like that. Reading such an individual the riot act may be a rough deal, but what else can you do? It is worth a try and if that doesn't work, you have to go the incompetence route legally, which is probably a bigger hassle than arguing it out with them. A third possible scenario; Upon thinking about the situation today and the advice I offered Robert of the two possible scenarios, I thought of a possible third one..... what might be even better is to perhaps try and plan some sort of a psychological ambush, or an intervention of some kind. Get any other siblings, any one he respects as a friend, (all CAREFULLY prepped and advised) to come over all at the same time, and ALL approach him ADAMANTLY and with deep concern, about getting proper diagnostic work done and proper medication lined up. He would hopefully be too embarrassed to fight really hard against a group scene like that. Make it appear casual....serve some refreshments or something so he would be busy enjoying the "unexpected" company, and then announce the purpose of the visit.... mutual concern for his health. Having everyone fully advised and prepped and in synch for this would be hard, but maybe not as hard as an argument would be. Of course he could conceivably promise everybody he would be cooperative and then promptly and conveniently forget the whole thing. You might need a friend with a video camera to record it. At any rate, Robert is in an awful spot and it doesn't seem to be getting any better. What made me realize that this might work, is that I remembered Ida would not listen to reason of any kind until her neighbors got together and somehow convinced her to. It was a sort of an intervention on their part. Once we got her out of the house, she began to realize that she had to make her plans and get things in order. It was sort of vague.. Partly she thought it was a weekend visit to us, and partly she thought she was going to have to go to a nursing home. It was as though she drifted back and forth between these two beliefs. We are fortunate that it all worked out OK for us all. It could have been much worse. SignatureEvelyn (To reply to me personally, remove sox) Oh Evelyn, Your post reminded me that a strategy we inadvertently used for my MIL- was to take her with us for a few days trip to the California coast. The premise was to show our teen son where we grew up, etc. But in the process, she realized how much help she needed to cope in the outside world and then the discussion of getting her to move East with us was much easier and she agreed right away. We were still in the seeking-her-approval-and-getting-her-agreement mode because we hadn't had to change the relationship dynamics. By the time we got her here, we had figured that out. Of course, she forgot it a few times as we were packing her up- and we dreaded getting her on the plane-in case she suddenly claimed we were kidnapping her. But it worked out and that part went easier than we dreamed. Bottom-line for Robert: his dad is going to stick to his guns in his castle; but might be more amenable in another setting. I like Evelyn's idea of a group of concerned folks-but I would guess that the significance might not register and you'd get him mad as a hopper which would re-enforce his adamancy (is that a word?). Tough, tough......... Beth in Maryland > Reading such an individual the riot act may be a rough deal, but what else > can you do? It is worth a try and if that doesn't work, you have to go the > incompetence route legally, which is probably a bigger hassle than arguing > it out with them. My father certainly has a diminished capacity mentally, but I am sure that neither of the doctors he's seen in the past six months would assert he is legally incompetent... yet. And I would still agree. I know the basline for mental incompetence probably varies from state to state, but I have had experience in Texas within my family who were in a far more demented state than my father and it is not something that I believe could be accomplished with him right now. And, to those who've brought up that as a course of action, I have to ask: what possible difference would a declaration of legal competency make to the issue at hand? The problem is that he stubbornly insists that his perception is sound; he isn't moved by the fact I disagree, he isn't moved by the fact his doctors disagree, he isn't moved by the fact other family disagree... do you really think if I wave a piece of paper that says that a judge also disagrees, he's going to say, 'Oh, in that case, I guess I have to go to the doctor'? A guardianship would give me a *legal* authority to compel his medical treatment, but what I have isn't a legal problem, it's a practical problem. Unless you're suggesting that I use the authority to, on his next trip in for a vitamin shot, order him to be secretly drugged into complacency, or have him forcibly carried to the doctor against his will, or have him locked up in a care facility where he can be forcibly medicated... to keep him at this level? I don't think anybody is really so off the mark that they're proposing that for someone with moderate dementia and a psychological stubborn streak, but if anyone is, they are way out of line - and I'd rather let the dementia move him to a more compliant stage than to inflict that on him. > A third possible scenario; > [quoted text clipped - 7 lines] > him ADAMANTLY and with deep concern, about getting proper diagnostic work > done and proper medication lined up. I considered that, in particular I discovered that his former co-treasurer at church and her husband were in the area (they've moved away but were back to see his parents). Dad likes and respects them both, and her father had AD. When I found out, I tried to call her for just this sort of thing, asking them to talk to him. Unfortunately, I was too late, and they'd already left town again. The other problem is that I am certain (and so are my sister and aunt) that his response to a coordinated front like that would be fury that we were talking about him behind his back. He might well agree, just to get everyone off his back, and then announce he'd changed his mind. (At this point, there may likely be a reply posted that it doesn't matter if I make him angry, because he will forget about it in short order. My answer is that anyone who says that is missing the entire point: he won't - he is not yet at a stage where I can count on him forgetting things in order to manipulate him, else I wouldn't be having the problems I am with him.) -- Robert Snip.... > The other problem is that I am certain (and so are my sister and aunt) that > his response to a coordinated front like that would be fury that we were [quoted text clipped - 8 lines] > -- > Robert Robert, I sympathize and do understand. I am also sorry that no one (including myself)could offer you any possible strategy that could work for you with your Dad. There are no simple answers for it. Having been in your position with Ida a couple of years ago, I know how hard it is. Knowing my own father, who is obviously from your Dad's same generation (and tough as nails too) I have no idea what would absolutely be guaranteed to work. Perhaps this is one of those things that require thinking on your feet at all times, being prepared for all eventualities, and waiting the right opportunity to make your thoughts known to him. They say that all things come to him who waits.... Sometimes there does come a time when they realize that they need help and they need it badly. It did eventually come for us with Ida, but it was so unnecessary that she suffered so much trying to make it on her own for so many months. I wish there was a way to avoid that for your Dad. I have to tell you that I am the type I would never let it rest no matter how mad he got, on a daily basis. I suppose that is just my nature. He being your same-sex parent, and you being a guy, you might not be able to get away with it. SignatureEvelyn (To reply to me personally, remove sox) Robert, I haven't been around the group much lately, so I'm coming in at the middle of this thread on your dad. He sounds so much like my own father was and a bit like my husband, George, is now. George is a retired Navy Captain and MD. He was in Korea, is one of the Chosin Few. And he didn't want to see a neurologist at first either. I finally told George that I agreed with him that he doesn't really need to see the neurologist. I told him, however, that "there has been talk" from high-ranking personnel that he's afraid to see a neurologist. I then told him that I would be so damn proud of him if he would just go ahead and see a neurologist to make these "hotshots" shut up and quit badgering him. He went -- grudgingly -- and it was the best thing he ever did. As soon as he did it, I started telling him how proud I was of him to be so self-aware and to realize his need to see someone who could prove he was "okay". Never had another problem. It's a long shot, but it might work. Mary K > Snip.... > [quoted text clipped - 37 lines] > being your same-sex parent, and you being a guy, you might not be able to > get away with it. > Robert, I haven't been around the group much lately, so I'm coming in at the > middle of this thread on your dad. He sounds so much like my own father was [quoted text clipped - 12 lines] > It's a long shot, but it might work. > Mary K Clever -- sort of strategies I have ben using with my dad. But what happened after he went to doc and was not pronounced *OK*? Just curious. Songbird Actually, that was the surprising part. When he was told he "seemed to have AD", he said "You know, I was just thinking that myself. So now what do we do?" I've had no trouble with him since. Mary K > > Robert, I haven't been around the group much lately, so I'm coming in at > the [quoted text clipped - 25 lines] > > Songbird > I have read all these posts and I agree that you have to "take the > bull by the horns" so to speak. I know this is what you have to do [quoted text clipped - 5 lines] > what one would do with somebody like him. Thank goodness his body > failed before his mind did. Kay, you have just described my father. He is a retired Navy Captain, commanded a destroyer and later an entire squadron of destroyers. When he first bought his current home, about twenty-five years ago, we happened to be in a boat-supply store and he saw a sign he inssisted I (I was a teenager then) buy him as a house-warming present. The sign read: The Captain is NEVER wrong. Misinformed, perhaps. Stubborn, Bullheaded, Stupid... But NEVER wrong! When my sister first tried to join in bringing up our concerns about his memory problems, his immediate response was that it was all right for her to express her worries, as long as she did not ever tell him that he HAD to do something. He also has a temper to match his stubbornness, and a mild streak of paranoia that has always caused him to take even just bad news in general as a deliberate personal criticism (I mean, this is a man who has - back when he was more lucid - become angry at me for telling his car air conditioner was malfunctioning). He was so angry during this last confrontation that he was shaking (more than his usual tremor), and I could hear him grinding his teeth from five feet away. And some may call it being 'buffaloed,' but I will admit to a degree of reluctance to provoking such rage in an old man who is also suffering from congestive heart failure. And while I'm sure the advice is well-intentioned and no doubt would work for some AD sufferers at some point in the disease, anyone who suggests that, if I secretly make an appointment, get Dad into the car on a pretext and deliver him to the neurologist and tell him he agreed to it, that my father would go along and not just storm out in a rage, does not have an accurate understanding of my father or the circumstances. -- Robert [snip] >And while I'm sure the advice is well-intentioned and no doubt would work >for some AD sufferers at some point in the disease, anyone who suggests >that, if I secretly make an appointment, get Dad into the car on a pretext >and deliver him to the neurologist and tell him he agreed to it, that my >father would go along and not just storm out in a rage, does not have an >accurate understanding of my father or the circumstances. Robert, I haven't said anything here lately, mostly because there hasn't been any change in my FIL's condition (mid- to late-stage AD). I don't know how my MIL handled the first few years of his decline. Once we all realized what the problem was, he was beyond the point of fighting any more and was susceptible to the usual strategies (deception etc.). But, the dilemma you're describing--the struggle with the very early stages of AD--is something I've never seen adequately discussed. Here in this NG and in "help" books like the 36-Hour Day, we hear about "loving deception" and taking charge and sundowning and adult diapers, etc. We don't learn how to deal with someone who is alert and coherent 70% of the time. We haven't figured out how to manage someone who is too proud or and still too self-reliant (most of the time) to allow others to make decisions for him/her. An example: Suddenly one day a loved one is sitting behind the wheel of his/her car and can't recall how to get to the restaurant where the retirees meet every Wednesday morning for breakfast. It's never happened before, but it happens again 6 or 8 weeks later. Do you decide he/she should no longer drive? Do you take away the car keys? Just how do you do that, with someone who has no difficulty managing complex tasks *most of the time*? People are becoming more alert to the signs of AD, and the medical profession is striving to diagnose it earlier. That means more of us than ever will be confronted by the challenge of a loved one who rejects the diagnosis and is uwilling to have his/her life "managed" by someone else. Cindy B. > [snip] > >And while I'm sure the advice is well-intentioned and no doubt would work [quoted text clipped - 19 lines] > someone who is too proud or and still too self-reliant (most of the > time) to allow others to make decisions for him/her. ... > People are becoming more alert to the signs of AD, and the medical > profession is striving to diagnose it earlier. That means more of us [quoted text clipped - 3 lines] > > Cindy B. You know, Cindy, I was reading in another thread where '36-Hour Day' was recommended, and my thought was that, having read the book, I haven't found it helpful... yet. I think I did start noticing things at an unusually early stage - but only because Iwas living with him, only because the little memory lapses and especially his mental slowness was so at odds with what he had been - it was a large *relative* decline. Family members talking to him once or twice a month by phone didn't see anything extraordinary when he told them the same things he'd said in the last phone call. It's not unusual for an old person to be slow counting out money for his purchases - but when it's someone who, two years earlier, habitually calculated the tab and the tax in his head faster than the clerk could punch them into the cash register, it's a huge relative decline. Also - people will think I'm exagerrating, but my father has/had a near-genius IQ - and I think he's able to compensate enough to cope at a functional level - just a much lower level than he once had. For example - I've mentioned the problems my father has wih the TV remote control: there's a 'Program Guide" button, and he seems to have completely lost any recollection of that; but when he lost that, he experimented pushing buttons and learned he can get to the program guide by going through the Menu and a couple of other steps... and so far, he has retained this compensating memory. He wrote his own computer accounting program, forgot his password, but remembered how to edit the program to find it again. (At the time, he told me that if he could do this, forgetting the password 'didn't count' as memory loss. FWIW, I think he's moved the next step - he was grumbling about a 'bug' he couldn't work around last week, took him two hours to print out a check that needed to be in the mail - and the next day he asked me to buy Quicken because 'Before long, (I) will have to take over his banking duties.') Dad's relative decline in his cognitive abilities is now apparent to everyone in the family, to some friends who've encountered him when he was in a more confused period. But I'm not sure how profoundly it would show up for a doctor who doesn't know him well - he's not forgetting who the president of the US is, or what a comb is called; he's losing more complex tasks, doing them slowly or sometimes not at all, and exhibiting spotty memory loss that's growing more widespread in steep dives amid plateaus of level ability. Thanks. -- Robert > > [snip] > > >And while I'm sure the advice is well-intentioned and no doubt would work [quoted text clipped - 69 lines] > memory loss that's growing more widespread in steep dives amid plateaus of > level ability. Such a hard stage. And yes, while it may sound a bit elitist, I agree that people who function on higher levels can compensate longer than those who don't function on that higher level. I saw it in both my Paternal grandmother and Maternal great aunt. With the former, we didn't learn until after her death that she had been losing her memory and abilities. We found out when we had to do the final work to close down her insurance and accounting businesses and realized she'd been making major errors. Luckily, there was only one malpractice claim out of all of the mess. As for the latter, we discovered the depth when she became wheelchair bound and asked my aunt to step in to help her hire a new attendant because "this one is stealing from me." But 'they' turned out to be a succession of attendants over several years who would be fired after only a couple of months because of paranoid accusations. One or more may have been stealing from her, but it was too late to get a reasonable idea of what occurred and when. My FIL had everyone outside the family 'fooled' for a long, long by limiting how much he'd talk to people. His doctors thought perhaps he was depressed, or just beginning to lose abilities. He was functioning to go run errands (hardware store or food, yes driving. Don't get me started.) until he refused to take his cardiac meds because he no longer remembered he had Congestive Heart Failure. He required hospitalization, and the nurses let the doc know just how tenuous his grip to reality was. The doctor refused to release him to home care at that point and he was placed in a NH. But this was at least 5, maybe 6 years into the decline. My FIL would get aggressive when things didn't go his way. Which is why my MIL allowed him to drive and do what he wanted. She has always taken a more submissive stance with him; she also feared for her physical safety if he lost control. It really is hard. Re: the neurologist - any chance a deception could be pulled off where you say an insurance may be cancelled if he doesn't have a 'routine screening?' Or his license to drive? Is he able to investigate this 'unlikelihood?' Having a person with higher functioning means the deceptions/manipulations have to be really clever. Also, is your dad having trouble finding the word he wants to say, so he 'talks around' the word ("you know, it's white and round, and has red stitching" for baseball), or says, "well anyway..." or "well, you know..."? The good memory but losing certain higher functions might mean that the frontal lobe is being affected, instead of it being AD. In AD, you lose function from the rear of the brain back, so you lose memory but keep executive functioning longer (like word retrieval). In Frontal Lobe dementia, you lose that executive functioning first at the front of the brain, and things progress towards the back. Wish we could help more. Adelle <snip> > Re: the neurologist - any chance a deception could be pulled off where you > say an insurance may be cancelled if he doesn't have a 'routine screening?' > Or his license to drive? Is he able to investigate this 'unlikelihood?' > Having a person with higher functioning means the deceptions/manipulations > have to be really clever. I have thought of that, but I think it would have to come from the doctor directly, not from me. Also, his primary health care is through his retired military (reserve) program, and I just got him changed over to this new provider over the summer; he also has health insurance as an option from his private sector retirement plan (inactive, but he can rejoin if he wishes). My reluctance about a 'do it or your insurance is cancelled' bluff is that if he's determined enough to avoid it, he might switch health plans again (and there's always a delay in his getting health care til it goes through). > Also, is your dad having trouble finding the word he wants to say, so he > 'talks around' the word ("you know, it's white and round, and has red [quoted text clipped - 5 lines] > dementia, you lose that executive functioning first at the front of the > brain, and things progress towards the back. Yes. The very first thing I noticed with my father, almost three years ago now, was that the name for his favorite dessert just 'fell out of his vocabulary,' as I've described it. Dad had a slice of Sara Lee Strawberry French Cheesecake about three times a week or more for probably a year or more; he said it caused him to have vivid dreams. Then suddenly he stopped remembering it as 'strawberry cheesecake.' He would 'talk around it,' as you say - it comes in a pie tin, it's got strawberries - it's 'Strawberry Pie.' Or 'Dream Pie.' Or 'Sara Lee.' Or just plain 'Pie.' One time he used his computer-generated shopping list, and the item he clicked on for it was 'Cobbler' (we had a peach cobbler in the freezer for months). If he had to convey to someone else what it was, he would occasionally ask me (sometimes asking what it was on Friday to tell one person, then asking again on Saturday to tell another); I was expected to know what it was he wanted, even if he listed it as 'cobbler.' I think it may have fallen even further from his mind, as he no longer asks for it by any of his names for it (now he asks for cookies). I have always strongly suspected it's something other than AD - it doesn't seem mostly to be short-term memory loss, though there's some of that too, it seems more random, like a shotgun-blast put a scattering of holes in his memory, plus a difficulty processing information - how to do things. Thanks. -- Robert (lots of snippage) > I have always strongly suspected it's something other than AD - it doesn't > seem mostly to be short-term memory loss, though there's some of that too, > it seems more random, like a shotgun-blast put a scattering of holes in his > memory, plus a difficulty processing information - how to do things. > > Thanks. Frontal lobe dementias (of which Lewey Body Dementia is one. My FIL either had it related to multi-infarct or just heredity) can lead to some very exasperating behavior as control over emotional outbursts is reduced very early on. There is also a tendency to remember things connected to strong emotions, even when other short term memory becomes affected. As you put together a notebook of symptoms and incidents (by date and time, if you can. It really helps in diagnosis and treatment) make sure you note the language lapses and inappropriate or exaggerated emotional responses. In fact, the fear of seeing the neuro is probably one of the latter. Too bad there isn't a way to connect seeing the neuro with an emotional response that would lead him to keep the appointment. OOh - maybe rely on patriotic feelings; they are doing a study of vets from a particular segment of service or duties to see if certain activities caused changes in brain function and could he please go in and be screened as part of the control group? Well, it was a shot in the dark, anyway. Hang in there! Adelle [more snippage] >Frontal lobe dementias (of which Lewey Body Dementia is one. My FIL either >had it related to multi-infarct or just heredity) I don't know if you were referring to DLB here, but there is no known hereditary link associated with the disease. There are a few candidate genes that have recently been considered but nothing significant. As for the shotgun memory effect--my Dad was the same way. He suffered from pure DLB. Darryl. > [more snippage] > [quoted text clipped - 8 lines] > As for the shotgun memory effect--my Dad was the same way. He > suffered from pure DLB. From what I read, DLB is specifically not an inherited disease. On autopsy, where the Lewey Body markers (? it's late and I can't think of the right word) are present, the dementia is not inherited. But there is a FLD which has no known cause/label which is inherited, but I can't recall the percentage. We think (sadly) that was what my FIL had, because his Dad had some similar symptoms to early stage, but died of cancer. Doesn't bode well for my hubby. Scary thought. Adelle FWIW, I think he's moved the next step - he was grumbling about > a 'bug' he couldn't work around last week, took him two hours to print out a > check that needed to be in the mail - and the next day he asked me to buy > Quicken because 'Before long, (I) will have to take over his banking > duties.') WOW! That is progress, and I am glad to hear he is finally beginning to face it a little! > Dad's relative decline in his cognitive abilities is now apparent to > everyone in the family, to some friends who've encountered him when he was [quoted text clipped - 4 lines] > memory loss that's growing more widespread in steep dives amid plateaus of > level ability. > Robert Ida really showed her deficits when the doctor asked her to do a consecutive set of tasks. He told her to take this white piece of paper, fold it in half, then fold it again in half (quarters), then to place it on the floor. She folded it in half once.... paused, and then handed it back to him. There were several other consecutive-instruction sort of tests, and she again showed her inability to remember what to do. At that point the problems were apparent only to those of us who were close to her. Casual friends chalked it up to "senior moments" -- Evelyn (To reply to me personally, remove sox) > FWIW, I think he's moved the next step - he was grumbling about > > a 'bug' he couldn't work around last week, took him two hours to print out [quoted text clipped - 5 lines] > WOW! That is progress, and I am glad to hear he is finally beginning to > face it a little! He hasn't admitted it yet, but I think he may have wrecked his self-made banking program to the point he cannot work out how to get it working again. He actually asked me to get QuickBooks, because it's advertised heavily, and I just waited til I was out and phoned and said I thought he meant Quicken, and why. I suspect he'll keep trying to get his program working (I see him from time to time in his room working on what I think is it) until next month's checks are due, then want to switch *us* to the new system. > > Dad's relative decline in his cognitive abilities is now apparent to > > everyone in the family, to some friends who've encountered him when he was [quoted text clipped - 17 lines] > problems were apparent only to those of us who were close to her. Casual > friends chalked it up to "senior moments" That sounds more like something that would give him problems. He scored perfectly on the MMSE (?) in May; in November, when he was giving his new doctor's nurse the paperwork and his regular memo to the doctor, I interrupted him with instructions also to give the doctor *my* memo (about his memory), and that threw him, to the point that a few seconds later he tried to hand my note back to me (and then *he* 'forgot' to give it to the doc, but I found it and passed it on). Thanks, Evelyn. -- Robert > > FWIW, I think he's moved the next step - he was grumbling about > > > a 'bug' he couldn't work around last week, took him two hours to print [quoted text clipped - 52 lines] > > Thanks, Evelyn. Dear Robert, My apologies for being so far behind again. Hope I can give you some helpful suggestions. First of all, your description of your Dad mirrors John's symptoms, personality, & a lot of our experiences. I do believe that having the higher IQ has allowed John to compensate & function much better, but I also credit the early start on aricept. Like your Dad, he can still reason, is not clinically incompetent, & could never be tricked into going to the doctor by saying we're going some place else, etc. John has always been a perfectionist so that complicates things too. So with John I use subtle suggestions to get him to agree to a lot of things. Try talking to your Dad at a good time for him---choose it carefully & not as part of another conversation you are having about his health. With John, I introduce ideas by saying, "John, I've been thinking...." or "I really want to talk to you about something---is this a good time?" Carefully role play the conversation in your mind so that you are so set on what you want to say & want to reply that you stay on task with him. Also, keep your sentences short. If I talked too fast to John or used really lengthy sentences, he couldn't follow what I was saying & would shut off the conversation. Tell him you have been reseaching & talking with people on this group & you really would like for him to try aricept---explain that it is a medicine that might help with the problems he's having. If he mentions the B 12 is all he needs, agree but take it further. The B12 only helps a little bit & until he gets the next shot. The aricept is just a pill that can help him in the long run. Then, drop the subject & ask him to just think about it. He doesn't need to decide right now but give it some thought. When I use this "thinking about it" with John, he will sometimes bring the subject up himself----Be patient; he may be thinking about it for a few days. If he doesn't bring the subject up, go through the process again but this time ask him if he's thought about trying the medicine you mentioned. I will keep my fingers crossed for you that by letting him feel he is making the choice, he'll agree to the aricept . That's when it comes up that the neurologist can prescribe it. Don't let him bait you into an arguement during the conversation---force yourself to stay calm & collected. I know calm & collected won't be easy, but take some deep breaths & keep reminding yourself you are subtly bringing him around to what must be done. In the meantime, go ahead & schedule the appointment. It will probably take a month or two to get him in anyway. I know you feel a terrible sense of urgency----been there, done that----All I can say is stay patient & keep yourself focused on the goal. Since you will be seeing this neurologist for the first time, give him a report on your Dad ahead of time. Write everything down so that he can understand that these changes are not baby steps in your Dad's life, but instead giant steps when one considers what he used to be able to do. Play this part up big with lots of examples. Yes, John scored low normal on his last neuro-psych test but this is someone who used to write computer programs, design & confer with engineers on projects, & on & on. This is what the doctors need to be made to understand &, trust me, it isn't easy getting that point across to them. A quick anecdote---John loved his motorcycle but one day made the comment he knew he wouldn't be able to ride it again. He loved that bike. A day or so later I had been cleaning the carport, came inside & commented that his bike was really collecting dust just sitting there. Maybe we should try selling it. We probably had this "think about it' conversation several times but he finally said sell it. When the buyer came to pick it up, I heard John tell him that now he wouldn't feel guilty about not being able to ride the bike & having it just sit there; it deserved an owner who could get it out & enjoy it! Hope this works for you. With LO's like your Dad & John I think it helps to let them feel empowered by making their own decisions---with our subtle help & encouragement. Always, Char <snip> > Dear Robert, > [quoted text clipped - 40 lines] > breaths & keep reminding yourself you are subtly bringing him around > to what must be done. Thanks, Char. I think I'll try pretty much what you suggest - but I may let my sister be the one making the suggestion, in a phone call - She better at that sort of making useful 'suggestions' steering someone to do what they should do (she's an elementary school teacher), and I suspect my father may just set himself in 'opposition mode' the moment I try to broach the subject. <snip> > Since you will be seeing this neurologist for the first time, give him > a report on your Dad ahead of time. Write everything down so that he [quoted text clipped - 6 lines] > understand &, trust me, it isn't easy getting that point across to > them. Thanks for the advice. I've got about three drafts for doctors, generalists and neurologists, with plans to fax them ahead of any appointment and to take a copy with me to the appointment. I'm glad you suggested 'lots of examples' I find myself wavering between including lots and worrying that I'll give the impression I'm obsessively over-concerned and have written down every jot and tittle of absent-mindedness (my journal of things noted is 12 pages of 10-point, single-spaced observations, and counting, and is nowhere near complete). I've tried to give examples of all the *kinds* of cognitive impairment I'm seeing - words 'falling out of his vocabulary,' persistently failing to remember some long-known fact, confusion and slowness in dealing with complex actions, and so forth. <snip positive anecdote> > Hope this works for you. With LO's like your Dad & John I think it > helps to let them feel empowered by making their own decisions---with [quoted text clipped - 3 lines] > > Char Thanks again, Char. -- Robert > I think I'll try pretty much what you suggest - but I may let my sister be > the one making the suggestion, in a phone call - She better at that sort of > making useful 'suggestions' steering someone to do what they should do > (she's an elementary school teacher), and I suspect my father may just set > himself in 'opposition mode' the moment I try to broach the subject. Robert, just my two cents -- this strategy has worked well in our family, too. Getting your sibling's help makes it easier. My brother actually calls periodically, esp. if he's planning a visit to the folks, and says, "OK, Sis, what am I in favor of?" We have a good laugh later when my dad will tell him, "You know, I was thinking..." and then repeats almost verbatim whatever I was suggesting. Brother pipes in "That's a great idea, Dad. I wouldn't have thought of it. I think you should do that." Then Dad comes back to me and says, "I've decided to do X, and your brother agrees." Of course, it was my idea in the first place, but who cares? He's making the choices he needs to for his and my mom's health, safety and comfort and we have preserved his dignity and sense of self along the way. It's not about me being The Daughter Who Always Knows Best. It's about them being safe and happy. > Thanks for the advice. I've got about three drafts for doctors, generalists > and neurologists, with plans to fax them ahead of any appointment and to [quoted text clipped - 4 lines] > is 12 pages of 10-point, single-spaced observations, and counting, and is > nowhere near complete). So say that in your summary -- just the way you said it here. I think it helps the doc see how you are approaching things, plus shows that you are trying to be even-handed and not "stack the deck." Keep us posted. Songbird > You know, Cindy, I was reading in another thread where '36-Hour Day' was > recommended, and my thought was that, having read the book, I haven't found > it helpful... yet. I'm with you Robert. I'm reading everything I can get my hands on re Alzheimers at this point, but very little of it addresses *today's* problems. I think I did start noticing things at an unusually > early stage - but only because Iwas living with him, only because the little > memory lapses and especially his mental slowness was so at odds with what he > had been - it was a large *relative* decline. Mine was the opposite way around. My parents never talk long on the phone, and I thought all was well. Until my mom thought it was Christmas two days in a row and sweetly called to wish me a merry one -- both days. I got up there -- 4-1/2 hours away -- as soon as possible for a weekend and discovered that both parents are quite coherent for short periods of time, but over the long haul, Mom's memory and Dad's reasoning and judgment lapses surface. My brother, who visited them more often, grew accustomed to each small slide and didn't notice until I pointed them out. Fortunately, very soon after that, my dad told me they would need help soon. (I am the Responsible One.) He laid it all out on the line re my mom's problems (he doesn't recognize that he has any) and agreed the time would come when they would need to move nearer to me. At that time he said 10 years -- now the house is on the market and they will move whenever it sells. > Also - people will think I'm exagerrating, but my father has/had a > near-genius IQ - and I think he's able to compensate enough to cope at a > functional level - just a much lower level than he once had. This was part of the reason we (brother and I) did not pick up on it earlier. When I went to visit for several days, their compensations became quite obvious. (and like your dad's, showed much intelligence and ingenuity.) But I'm not sure how profoundly it would show up > for a doctor who doesn't know him well - he's not forgetting who the > president of the US is, or what a comb is called; he's losing more complex > tasks, doing them slowly or sometimes not at all, and exhibiting spotty > memory loss that's growing more widespread in steep dives amid plateaus of > level ability. Ours gave Mom the MMSE, which she only missed one question on, and pronounced her "fine." He totally ignored all the things the family told him about her loss of ability on more complex tasks or not so complex -- she forgot my name, for example. Because he sees no problem, he declined to refer her to a neurologist or prescribe Aricept. One of the big reasons I am glad they are moving: I can get them to another doctor! (they think this guy hung the moon!) As Evelyn suggested elsewhere, I will ask their new doc to do more comprehensive screening as if it were part of a new patient physical for any senior. We have already discussed making sure my name is on the "OK to talk to" list at the new practice, as if it were routine. I have convinced my parents she should give up driving, and we have sold her car and when she moves to my state will get an ID not a license. The harder one to deal with is my dad. I'm not sure if his is alzheimer's or what, but I suddenly find myself dealing with an ex-minister and ex-Marine who is helpless in business decisions, but will only admit it in certain cases. Although I don't want either of them to proceed down this path, as Evelyn often posts -- these early stages are the murkiest waters. Hang in there, Robert. Songbird <snip> > But I'm not sure how profoundly it would show up > > for a doctor who doesn't know him well - he's not forgetting who the [quoted text clipped - 9 lines] > refer her to a neurologist or prescribe Aricept. One of the big reasons I am > glad they are moving: I can get them to another doctor! Same with Dad's doctor last May - he said the health plan my father was on at the time wouldn't even approve payment for Aricept until the scroe was below 20 (a church friend of Dad's with AD (Dad didn't know what it was) recommended Aricept, so Dad brought it up). He did at least make referrals to a neurologist (referrals my father canceled). > hung the moon!) As Evelyn suggested elsewhere, I will ask their new doc to > do more comprehensive screening as if it were part of a new patient physical > for any senior. We have already discussed making sure my name is on the "OK > to talk to" list at the new practice, as if it were routine. The nurse so far with the new doctor is understanding and has talked with me. I intend to push for a detailed workup by the regular doc at least, at the next regularly-scheduled appointment. But I don't think that will come until he has to go in for his blood clotting titration test (for the Coumadin he's on), and that won't be for at least another month, possibly three months (assuming my father doesn't renege on his promise to go and deal with my concerns then). > The harder one to deal with is my dad. I'm not sure if his is alzheimer's or > what, but I suddenly find myself dealing with an ex-minister and ex-Marine > who is helpless in business decisions, but will only admit it in certain > cases. Again, that sounds very familiar to me. > Although I don't want either of them to proceed down this path, as Evelyn > often posts -- these early stages are the murkiest waters. Hang in there, > Robert. > > Songbird Thanks, Songbird. You, too. -- Robert I don't know why more family doctors don't do the simple clock face tests - they are so easy to do, and so revealing. At the time we mentioned to the doctor that something was up with Dolli (my MIL), she would have doubtless passed the MMSE with flying colours - and she certainly did well when the doctor asked basic questions about the date, where she lived, her age, who the prime minister was etc. However, he then got her to copy a couple of little line drawings (one was of a house that showed the side as well as the front) and her version looked like an disorganized bunch of lines - she just couldn't put the image together at all. He did a few clock faces. On one of the clock faces, he put the 12 at the top, and asked her to put the rest of the numbers around the edge...and she wrote 3,4, 5, 6 in a straight line that trailed off after the 12. Given another try, she put all the numbers in a clump in the first quarter of the circle. On another, he put the numbers on and asked her to put the hands on in position for a particular time (3 pm) and she wrote 2 zeros beside the 3 and thats as far as she got. I think he did a couple more, but the above were the items he actually showed me out in the hall. He was totally shocked - as was I, since you never, never would have guessed her mind was that impaired from meeting her - and in fact, all we had noticed at the time was some forgetfulness - no real impairment in reasoning at all. Nothing like a black and white demonstration like that to get you out of complacency. Mary G. > But I'm not sure how profoundly it would show up > for a doctor who doesn't know him well - he's not forgetting who the > president of the US is, or what a comb is called; he's losing more complex > tasks, doing them slowly or sometimes not at all, and exhibiting spotty > memory loss that's growing more widespread in steep dives amid plateaus of > level ability. any doctor who relies only on a "who's the president" question should not be trusted to have an informed opinion of your father's health! believe me, a physchologist or psychiatrist doesn't need to know your father well to detect an impairment, because they have relatively reliable test instruments that really do work. a thorough neuropsychiatric exam would reveal impairments in such things as remembering all the steps of a complex task, the ability to perform increasingly complex arithmetic computations, the ability to remember a name, a phrase, or a number for a few minutes while being interrupted to perform another mental task, and the ability to draw a clock face and tell time with it. > But, the dilemma you're describing--the struggle with the very early > stages of AD--is something I've never seen adequately discussed. Here [quoted text clipped - 5 lines] > time) to allow others to make decisions for him/her. > Cindy B. Cindy and Robert and all, In today's "Dear Abby" column this very particular issue is addressed, including the reluctance of family members to accept the slowly encroaching deficits of loved ones with early Alzheimers. This covers the active resistance of those who deliberately toss obstacles in the way of caregivers insisting there is "nothing wrong" with the mutual relative etc. making it harder and harder to get them off the road or get tested, treated or whatever. This, in my opinion is the single WORST thing people can possibly do... deny that there is a problem and make it harder for those whose responsibility it is to care for the person with suspected AD. I see this as the hardest possible time, and the time with the most obstacles to overcome.... driving, testing, medication, cooperation, legal issues... all of it. If the Alzheimer associations of this world have ONE area they might try to address, it would be in the area of educating the public that YES it CAN happen to any of us, and that it isn't an infringement of the person's rights when their loving caregivers want to see them get early diagnosis and proper medication early in the game and get them off the roads before they get lost or kill someone or worse. I think that the only way we will ever see this change is if some sort of a cognitive test is given to EVERY person, every year, along with ones regular physical, mammograms, pap smears (for the ladies), PSA tests (for the guys), routine yearly blood tests, what have you ... over the age of 50. Although I know there are those who get early onset that occasionally even manifests itself before the age of 50, it would be a good thing to catch this earlier, and people need to be educated. I think that many people of the older generation, much like my mother in law, felt that people were "trying to make me out to be crazy" when she still felt like herself, and it is all too easy to blame it on "a little forgetfulness" like everyone experiences in later years. This is a horrible illness and there are millions of cases expected to come up over the next few years as all the baby boomers reach retirement age. Early detection and early medication are dependent on education of the public to be alert to it and not to live in denial. SignatureEvelyn (To reply to me personally, remove sox) > An example: Suddenly one day a loved one is sitting behind the wheel > of his/her car and can't recall how to get to the restaurant where the > retirees meet every Wednesday morning for breakfast. It's never > happened before, but it happens again 6 or 8 weeks later. Do you > decide he/she should no longer drive? yes, because the "outage" is so unpredictable. you don't want it happening in the middle of a busy and complex intersection, or in a crowded public market, like that driver in california that mowed down all the pedestrians, do you? > Do you take away the car keys? no, you have their doctor do that for you, by telling the DMV that the patient is too impaired to be driving. > Just how do you do that, with someone who has no difficulty managing > complex tasks *most of the time*? you have them tested with a test like the MMSE, which reveals a lot of impairments that may be worse than most observers would perceive. |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2009 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.