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Medical Forum / Diseases and Disorders / Alzheimer's / December 2005we have a decision
The Neuro told my hubby that he has MCI "in all areas" the amnestic type. He will not be able to work or drive. When John started to get upset she told him it was up to the DMV to test him it was out of her hands. He seemed shocked by the diagnosis and cried most of the drive to the apt. I am going to let things settle down over Christmas then will start sorting thru things at the apt and moving what we want to keep up to the house. He will be given anti-psychotic drugs to keep him calm but nothing else. They are not sure if this will develop into AD but want to hold off on the Aricept until it does? The doctor told me to get us settled as soon as I can and try to get him into a routine. He kept asking her what can be done to stop this and the poor woman had to keep telling him that right now there is nothing they can do to help him. Merry Christmas and here we go LJ > The Neuro told my hubby that he has MCI "in all areas" the amnestic type. > He [quoted text clipped - 16 lines] > Merry Christmas and here we go > LJ MCI? Good luck anyway.  SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com > MCI? ==================== Mild Cognitive Impairment http://www.mayoclinic.com/health/mild-cognitive-impairment/DS00553 http://www.emedicine.com/neuro/topic714.htm SignatureJohn Inzer Mild Cognitive Impairment some think it is a kind of AD some think it is different. Those that have it some get AD others just have this. He has all of the symptoms of AD but not as bad. He is 56 yrs old and we don't know family history so will have to wait and see. LJ > > The Neuro told my hubby that he has MCI "in all areas" the amnestic type. > > He [quoted text clipped - 20 lines] > > Good luck anyway. > Mild Cognitive Impairment > some think it is a kind of AD some think it is different. Those that have [quoted text clipped - 3 lines] > as bad. He is 56 yrs old and we don't know family history so will have to > wait and see. Any reason why you hold off the Aricept until it gets worse? AFAIK it has few side effects, and might well have an impact? If it does, better it has the impact now, when your husband might rewind a year or two (say) from now, rather than after 2 or 3 years deterioration and he rewinds a year or two, but still worse than where he is today? IME (and also anecdotally repeated here) the effects are very quick, you'd know within a week or two whether it was making a difference. SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com I don't understand her reasoning either. I am going to talk this thru with his PCP. The neuro told me to my face to expect this to get worse. She said the drugs only last 6-9 months but I have read many times that taking them for years can help some for some people LJ > Any reason why you hold off the Aricept until it gets worse? AFAIK it has > few side effects, and might well have an impact? If it does, better it has [quoted text clipped - 4 lines] > IME (and also anecdotally repeated here) the effects are very quick, you'd > know within a week or two whether it was making a difference. >I don't understand her reasoning either. I am going to talk this thru with > his PCP. The neuro told me to my face to expect this to get worse. She [quoted text clipped - 3 lines] > > LJ For what it is worth, our experience was very good with the Aricept. They started her on it right away, at a smaller dosage, then raised it after a few months to double the initial amount. The effects were very clear, and made more evident when after about two years, our doctor wanted to switch her to another similar drug, which had to be started again at a very small dose. The very first day she was off the Aricept and started the small dose of the new drug she was noticeably confused and mixed up. After a week of that, I called the doctor and said "if it ain't broke, we shouldn't try to fix it.... please let her have the Aricept back" and he did. Again the results were noticeable, and we had the person we knew, back again. She was on it for the entire 4 years until she died last spring. It definitely helped a lot. It isn't a cure, but it helps. Best Regards, Evelyn Ruut thank you for that info. I will push harder when we see his regular doctor LindaJean > For what it is worth, our experience was very good with the Aricept. They > started her on it right away, at a smaller dosage, then raised it after a [quoted text clipped - 13 lines] > Best Regards, > Evelyn Ruut Well, for my father it worked for 3 or 4 years, and likely would have worked for longer, and again anecdotally others here have reported similar, so its foolish to believe there is a set limit. I will get worse, if its Az, she is right on that, much worse, but it *might* help that time be many months, maybe even a year or three, away. Plus, with the only side effect I've read being nausea, and that in 10% only, and that mostly evadable by splitting the tablet and eating at the right time, and with a quick time to see if it works (It doesnt work for everyone), its really hard to see why you wouldnt try it. One other thing, suppose it does only work for 1 year. Would you rather have that year now, putting your husband much closer to 'normality', than in say 3 years time, putting him from maybe 'pretty bad', back to 'bad'. This all assumes it works for him of course, but if it doesnt, maybe better to find that out now rather than be resting your hopes on it in 3 years time and being very dissapointed? Anyway, good luck whatever you do. SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com >I don't understand her reasoning either. I am going to talk this thru with > his PCP. The neuro told me to my face to expect this to get worse. She [quoted text clipped - 16 lines] >> you'd >> know within a week or two whether it was making a difference. yes I agree with you and that Neuro does not specialize in AD I will see what I can do for him because I sure would rather have my husband for just a bit. LJ > Well, for my father it worked for 3 or 4 years, and likely would have worked > for longer, and again anecdotally others here have reported similar, so its [quoted text clipped - 36 lines] > >> you'd > >> know within a week or two whether it was making a difference. > I don't understand her reasoning either. I am going to talk this thru with > his PCP. The neuro told me to my face to expect this to get worse. She said > the drugs only last 6-9 months but I have read many times that taking them > for years can help some for some people LJ, the textbooks still say 6-9 months but my MIL's current doc has told me to expect an obvious deterioration if she came off of Aricept and she's been on it 5 years. I think the study results have been skewed because some people it helps a lot and some apparaently need a different drug. I'd push for trying it and preserving what you can now. But it sounds like you'd benefit from a consultation with someone that specializes in AD and dementia. Sometimes it seems like you practically need a specialist for your left toenail, but this really is a case where a specialist will know more about how to preserve what's there and what to expect. Karen Mom's doc said same thing -- that Aricept would have lessening effect after a while, at which a point they could step up the dose and then later on add on Namenda or one of the other drugs. My theory was "why wait?" Preserve the highest quality of life possible. And who know what may happen several months down the road? Worst case scenario, Mom dies of a geart attack or stroke. (She has high cholesterol, high blood pressure and diabetes as well, so that could easily happen.) Best case scenario: Someone comes up with a new drug that will help or even cure. Songbird LJ i just finished reading "Alzheimer's, A Love Story" by Ann Davidson. She went through sort of what you are going now. Her 50ish husband scientist professor for 30 yrs in Stanford Univ diagnosed with AD. I reccommend this book to you. > The Neuro told my hubby that he has MCI "in all areas" the amnestic type. He > will not be able to work or drive. When John started to get upset she told [quoted text clipped - 11 lines] > Merry Christmas and here we go > LJ thank you. I will look for it LJ > LJ i just finished reading "Alzheimer's, A Love Story" by Ann Davidson. > She went through sort of what you are going now. Her 50ish husband > scientist professor for 30 yrs in Stanford Univ diagnosed with AD. I > reccommend this book to you. Knowing what I know now re Doctors I would not rely on one Drs opinion,in fact I would be asking how many patients and with what results she has treated other patients without the aricept and with what results.I would be seing an expert in the field of Dementia and I know for sure I would be insistent on the Aricept being prescribed. Do you have the legal papers organised Enduring power of Attorney and Guardianship etc.It is a must while your husband can still be aware cognitively able to make the decisions on who will care for his future needs both financial and medical.Well this is what required in Australia. Kind Regards Michelle we had papers drawn up and he canceled the appt to go in and sign them. I am now making a new appt for signing with 2 of my kids as backup for hubby in case I die LJ > Knowing what I know now re Doctors I would not rely on one Drs > opinion,in fact I would be asking how many patients and with what [quoted text clipped - 8 lines] > Kind Regards > Michelle Hi Michelle - I would agree entirely. I answer Alzheimer's questions for allexperts.com and I constantly get questions from people about their loved ones treatment - and it continues to amaze me how many family doctors know nothing about AD. Very often the family doctor is hopelessly out of date, dismissive, unhelpful, or just plain ignorant about the illness. Many times the person is never sent to a specialist for diagnosis or assessment, the family is never really informed about the prognosis or the treatment options - and as a consequence, the caregivers end up without the help or knowledge they need to make decisions or to get ready for what is coming. It borders on criminal - especially for people in the US who really need to be well prepared given the convoluted rules around insurance, medicaid, estate planning etc. We were very fortunate in that our family doctor immediately sent my MIL to a specialist in dementias, and he not only did a full physical and cognitive assessment, but put us in contact with social services (a geriatric social worker who knew the ins and outs of everything that was available and could help us access all kinds of services we wouldn't have known about, guided us to the various kinds of care facilities, gave us advice about the local good ones, waiting lists etc. ). I live in Canada, so the insurance thing is not an issue at all here - and paying for care is also not as huge a deal - our universal health care insurance covers everyone, and there are lots of non-profit homes that are really terrific (they are also quite inexpensive compared to the US because so much of the medical care is covered by our insurance, so you are only paying a fraction of the total cost). Going into a care facilty doesn't bankrupt the family. Many not for profit homes charge fees based on income, not net worth. In many places in the world (including where I live in Ontario, Canada) powers of attorney are split into two documents - one for financial matters and one for personal care decisions, and a family needs both to manage the affairs of someone who is impaired. You absolutely MUST have the ability to handle both aspects of care, or the government steps in, and its messy and expensive to straighten out (and usually involves going to court etc.). I have a friend who was not aware his mother had signed a powers of attorney for her care, and put them in her safety deposit box. She had a stroke, and he ended up having to go to court to be able to manage her affairs. It was extremely expensive and nasty - the judge was quite insulting, even though the mother was semi-comatose - inferring that her children were after her money etc. After the fact, and after spending all that money for lawyers etc. they found the original powers of attorney. Ay yi yi! If only the mother had made sure her children had copies and were aware of what she had done! Mary G. Toronto Oh Dear what a mess that would be,When we did all the paperwork with Mum we covered Dad as well we worked it that with Mums finances that while dad is able he handles that if he is not ever able my sister and I take over from him. With the guardianship my sister and I hold the power over Dad and Mum to make all the medical decisions. That of course is if the so called powers that be(Drs,Nursing Homes)takes any notice of it. In my case my sister has trouble coping with this disease and Dad leaves all the decisions up to me but I always refer to him before I make any major decisions. Kind Regards Michelle My uncle was diagnosed with AD here in Puerto Rico then went to Boston where his son lives and is going through all sorts of tests physical as well as psychological, he's been there twice this year, and he just came back saying the doctors there had found a window of opportunity that what he has may not be AD. He is having a happy Christmas. One has to seek the experts. Medicine is very specific. The Alzheimer's Association can also help pointing to the best doctors in your area. You must be very busy and tired so take your time, whatever will be will be. Enjoy the present, enjoy this Christmas the best you can. Turn on the Christmas lights and the Christmas music. Concentate in the many things you can do not in those you can't do. Thank you, I am trying hard to just let this all go for a few days and count my blessings LJ > My uncle was diagnosed with AD here in Puerto Rico then went to Boston > where his son lives and is going through all sorts of tests physical as [quoted text clipped - 8 lines] > on the Christmas lights and the Christmas music. Concentate in the many > things you can do not in those you can't do. I just now found out my husband had been online messing with our health insurance coverage more than 2 weeks ago. I caught him trying to figure out what he had changed and trying to put it back. It takes very little to damage a lot LJ > Oh Dear what a mess that would be,When we did all the paperwork with > Mum we covered Dad [quoted text clipped - 9 lines] > Kind Regards > Michelle michelle <feistylady01@gmail.com> is alleged to have said: > Oh Dear what a mess that would be,When we did all the paperwork with > Mum we covered Dad > as well we worked it that with Mums finances that while dad is able he > handles that if he is not ever able my sister and I take over from him. It's important with powers of attorney that there be a backup or two in case the primary person can't or doesn't want to continue. If there are backups named, the primary can just resign and the next person in line take over. Otherwise, there must be more lawyers and paperwork and maybe even guardianship hearings if the person's condition has deteriorated in the meantime. > With the guardianship my sister and I hold the power over Dad and Mum > to make all the medical decisions. > That of course is if the so called powers that be(Drs,Nursing > Homes)takes any notice of it. Letters from lawyers can be very persuasive. > In my case my sister has trouble coping with this disease and Dad > leaves all the decisions up to me but I always refer to him before I > make any major decisions. > Kind Regards > Michelle SignatureJo Ann Malina, make spamthis best to find my address Life is what happens to you while you're busy making other plans. -- John Lennon, "Beautiful Boy" the issue that keeps biting us in the butt with my MILs POA is that they are both joint... hubby and one of his sisters both, in theory, have to agree. It's quite possible MIL MEANT one or the other - but the lawyer (not an elder law attorney; I suspect if he had been, he'd have known better) made it joint.... it bites - causes arguments, delays and all sorts of uneccessary hassles ... and given our situation, where WE'RE the ones living with her and providing all of her care, having someone more than an hour away that visits once a month at MOST that we have to get signatures and so on from is SUCH a PAIN > Hi Michelle - I would agree entirely. I answer Alzheimer's questions > for allexperts.com and I constantly get questions from people about [quoted text clipped - 46 lines] > Mary G. > Toronto Lee wrote: the issue that keeps biting us in the butt with my MILs POA is that they are both joint... hubby and one of his sisters both, in theory, have to agree. It's quite possible MIL MEANT one or the other - but the lawyer (not an elder law attorney; I suspect if he had been, he'd have known better) made it joint.... Mary responds: My father was smart about his estate etc. - he made me the sole POA, executor etc. My brother resented the fact I was in charge, but I don't know what would have happened if Dad had done anything else. As it was, my brother was just this side of impossible to deal with, and was a huge pain in the neck every inch of the way. Just to give you an example, when my father's house was up for sale, the agent told me to expect multiple offers over one weekend, and I told my brother - who then went out of town and didn't bother to let me know how to contact him (I had no idea where he was or who he was with). He had a huge snit fit when he came back and the house was sold (despite the fact the offer was everything we had hoped for and then some, and would have expired in 24 hours). If I had needed his royal permission for every move, the estate would never have gotten settled, and as it was, it took more than a year to wind up. He was just awful during the entire thing, wouldn't sign papers, wouldn't help with anything, created all kinds of problems and work, and was a general purpose miserable sod - I think he was just in total denial that my father could ever die, let alone that his house and possessions would have to be dealt with and dispersed. I can't imagine having to deal with my brother while my father was in his final hours over medical decisions. Argh!! So, thank you, Dad, for not making it joint!!!! M. Our prayers are with you. It is heartbreaking to see someone you love lose touch with reality. On the other side of all this, you will be stronger. It is hard to see that now, but on the other side of struggle, there is strength. Many times our pain can be turned into blessings and encouragement for others and that is what sharing our lives is all about - helping and loving others who are in need and so desperately need us. God bless and happy holidays. > The Neuro told my hubby that he has MCI "in all areas" the amnestic type. > He [quoted text clipped - 16 lines] > Merry Christmas and here we go > LJ |
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