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Medical Forum / Diseases and Disorders / Alzheimer's / October 2005Rapid deterioration
My mother-in-law was a healthy 80 year old when she went to live in an Alzheimer's facility less than a year ago. She could walk well, stand erect, handle her personal needs, etc. In just the last few months she's deteriorated very rapidly. She now shuffles instead of walks. She's bent way over and to the side. She sits on a chair with her whole body slanted and her head drooping. She shakes. She can't handle stairs. She can't dress herself or go to the bathroom alone. She can barely eat without help. Her mental state also seems to be deteriorating rapidly. Although her memory and orientation were already badly damaged, she could speak beautifully when she first went in and her social skills were at least partially intact. Now she mumbles repetitive, barely coherent stories that bear no relation to reality. We see her frequently at the home and have no evidence of any abusiveness there. She's not taking psycho-active drugs. I don't think she's taking any drugs she hadn't taken for years. The home seems very well run and many other residents do not seem to be deteriorating the way she is. We're not aware of any specific physical ailments other than AD. Have other people seen this sort of rapid change? Does AD itself do this? Is this something that happens when a person is near the end, or might she live for years like this? At this rate she'll be completely helpless and in a wheelchair in a matter of months, needing to be strapped in to even sit up. I hadn't seen this kind of rapid physical deterioration before in my mother, who suffered from AD for many years. Her changes seemed more gradual. Thanks. Has she been evaluated by a neurologist? sounds like possible strokes to me. IMHO. Songbird > My mother-in-law was a healthy 80 year old when she went to > live in an Alzheimer's facility less than a year ago. She [quoted text clipped - 31 lines] > > Thanks. > Has she been evaluated by a neurologist? sounds like possible strokes to me. > IMHO. Not to my knowledge. I will look into that. Thanks. If there were strokes, is there anything to be done about it? I hope it doesn't sound horrible to say this but I suspect other people will understand exactly what I mean and why I say it. I think it would be a mercy for her to be carried off quickly by a stroke. Alan >> Has she been evaluated by a neurologist? sounds like possible strokes to >> me. [quoted text clipped - 10 lines] > > Alan I know what you mean, Alan, but you are assuming a future stroke would be a neat, clean end. It might not be. My mom is on blood thinners to lower the risk of stroke because she has high blood pressure and atrial fibrillation. Future TIAs could only accelerate her mental deterioration. There may also be some therapies that could help her. I always figure the more I know, the better. Songbird Alan, it does not sound horrible at all. Many of us have had the same feelings. Gwen >> Has she been evaluated by a neurologist? sounds like possible strokes to >> me. [quoted text clipped - 10 lines] > > Alan Alan.--First let me thank you for your great post in response to mine. It helped so much. I took Don to the psych Dr (a lovely lady) She will keep him on Resperid0l for a few more weeks and wean him off. He was (eerily) quiet. But he remembered my name & relationship & seemed more amenable to directions --not that he could follow them any better-- but so much calmer----this med sure seems to take the fiestiness away. Too, I do believe , from observation.,there is/are one or two aids no one would miss. You should be aware many or most of us have these thoughts & pray for some intervention...The physc Dr went to great lengths to tell me of the bad points of Respiradol (heart & stiffness). I could only think of aggressivness--being much worse.if it got to a point no one could reach him. I really can,t believe it has come to this.. I would check on whatever meds your MIL is on now. & re-read the info on them --long term use.. Again thank you all for responses.. Florence >>> Has she been evaluated by a neurologist? sounds like possible strokes to me. IMHO. Songbird <<< Sounds like my uncle. He was diagnosed with alzheimers. It turns out he was riddled with bone cancer and that was causing him to have TIA's. He had lots of them before his family finally got the right diagnosis. But by then it was to late. He was told he had bone cancer and 2 weeks later he died. It's strange that his leg hurt so much more than any other part of his body. When they did the autopsy he had not a drop of cancer in the leg but everywhere else was hit hard. The TIA's caused his memory lapses and he had trouble remembering the correct words. He never stuttered until his TIA's then once in a while had trouble getting his words out. ~mo~ >>>> Has she been evaluated by a neurologist? sounds like possible strokes to me. >IMHO. [quoted text clipped - 7 lines] >other part of his body. When they did the autopsy he had not a drop of >cancer in the leg but everywhere else was hit hard. The pain might have been caused by damage to the nerves from that undamaged leg. People with any form of dementia can and do get all the diseases that we all get; but the dementia makes it much harder to diagnose them. That makes the caregivers task that much harder. Just goes to show you how sloppy the diagnosis process is for many dementia patients. Clearly the poor man was slapped with the AD label with a minimum of examination and thought (i.e. older person, mind slipping, must be AD....or worse "senile dementia".) Just unforgivable. As advocates for family members, we all need to insist they are properly examined by specialists and given all the appropriate tests to as accurately as possible establish the cause for their symptoms. I'd be livid if I found out that a loved one might have been helped if the doctor hadn't been dismissive or perfunctory. Its particularly important now that there is a growing awareness that there are distinct causes and forms of dementia and that what might slow down one might actually make another one worse. A proper diagnosis can also help a family with planning - i.e. knowing what to anticipate in terms of the way whatever the underlying disease is will progress, and the behaviours it may produce. In answering questions for allexperts.com, it blows me away how many families face this - it seems more common than not - doctors who dismiss family concerns and refuse to send the person to a neurologist (what do you expect, she's 80!), or doctors who slap a label on the person without any proper tests or examination. Mary G. friend of mine's husband was diagnosed with - and treated for - Alzheimers.... the brain tumor (eventually removed surgically) which was actually causing his dementia wasn't found until years later - when he was given a CT scan after being diagnosed with lung cancer No way of knowing what his quality of life might have been for those last years if he'd been properly diagnosed and treated in the first place... unlikely to have been worse though, I would think He's not that old either .... now 65 and cancer free - unfortunately, will never regain the function he lost. Agressive, miserable, severely brain damaged - but hey, he's cancer free - and his business was very successful so there's plenty of money to pay for his ongoing care in a secure hospital unit. Whole thing sucks. > Just goes to show you how sloppy the diagnosis process is for many > dementia patients. Clearly the poor man was slapped with the AD label [quoted text clipped - 21 lines] > > Mary G. > Have other people seen this sort of rapid change? Does AD itself > do this? yes, and yes. the rate of change is variable, and physical illnesses such as the flu or a urinary tract infection (common when AD patients don't/can't drink enough water) can cause a rapid decline. one thing about AD is that you can't count on anything happening on any kind of schedule, or having symptoms that allow neat compartmentalization into "stages". in our case, the deterioration is very rapid ... has been for quite some time.. .but we know she has vascular demential and TIAs in addition to the Alzheimers... certainly something to consider > My mother-in-law was a healthy 80 year old when she went to > live in an Alzheimer's facility less than a year ago. She [quoted text clipped - 31 lines] > > Thanks. Alan Meyer <ameyer2@yahoo.com> is alleged to have said: > My mother-in-law was a healthy 80 year old when she went to > live in an Alzheimer's facility less than a year ago. She [quoted text clipped - 29 lines] > in my mother, who suffered from AD for many years. Her changes > seemed more gradual. Is she getting any kind of physical therapy or exercise? This can help keep the brain and body going. If she just sits all day, she will deteriorate faster. Also -- I hate to sound paranoid, but are you sure she isn't being given psychoactive drugs? A drugged patient is a compliant patient. There's also the possibility of toxic buildup of other drugs. In older people, any drug can build up in the body, as the liver can't eliminate it as well as in a younger person. It might be time for a drug review with her doctor. But, yeah, the disease can take sudden turns. You cut enough cables, and eventually, the bridge falls down. The day before it falls, it still looks more or less ok. You kill enough brain cells, and suddenly there are no alternative paths for electrical impulses to take. The brain and body communicate via nerve impulses and hormones. That's one of the things about spinal chord injuries -- when the rest of the body can't talk to the brain any more, systems go awry, tissue breaks down. If the reason for that bad communication is because parts of the brain aren't working any more, it doesn't matter that the spine is intact.  SignatureJo Ann Malina, make spamthis best to find my address Extreme remedies are very appropriate for extreme diseases. -- Hippocrates > Alan Meyer <ameyer2@yahoo.com> is alleged to have said: > > My mother-in-law was a healthy 80 year old when she went to [quoted text clipped - 41 lines] > it as well as in a younger person. It might be time for a drug review > with her doctor. I agree. Check what medicines she is being given and when they were started. > Is she getting any kind of physical therapy or exercise? This can > help keep the brain and body going. If she just sits all day, she > will deteriorate faster. That's indeed a problem. They have regular light exercise sessions at the home, but she didn't participate. Her husband, when he was healthy enough himself, visited every day and attempted to walk her around the grounds. But she has never been interested in exercise and now it seems impossible. It so often happens that the things that could help most are the ones that the patient is most resistant to. > Also -- I hate to sound paranoid, but are you sure she isn't being > given psychoactive drugs? A drugged patient is a compliant patient. > There's also the possibility of toxic buildup of other drugs. In older > people, any drug can build up in the body, as the liver can't eliminate > it as well as in a younger person. It might be time for a drug review > with her doctor. I _think_ she isn't. I _think_ the home is responsible enough (it's sure expensive enough) to not be giving unapproved or unreported medical treatments. > But, yeah, the disease can take sudden turns. You cut enough cables, > and eventually, the bridge falls down. The day before it falls, it > still looks more or less ok. You kill enough brain cells, and > suddenly there are no alternative paths for electrical impulses to take. That's an interesting way to think about it. It seems very descriptive of what we actually see. > The brain and body communicate via nerve impulses and hormones. That's > one of the things about spinal chord injuries -- when the rest of the > body can't talk to the brain any more, systems go awry, tissue breaks > down. If the reason for that bad communication is because parts of the > brain aren't working any more, it doesn't matter that the spine is > intact. Thanks to all for the replies. > "Jo Ann Malina" <jmalina@spamthis.com> wrote in message >>Also -- I hate to sound paranoid, but are you sure she isn't being [quoted text clipped - 7 lines] > expensive enough) to not be giving unapproved or unreported medical > treatments. In many states, anytime there is a medication change, the home has a legal obligation to notify the person responsible for her that it is going on. I agree with the med review idea. Very often, dosages need to be adjusted to account for new clinical data. Beth SignatureDon't go around saying the world owes you a living. The world owes you nothing. It was here first. ~Mark Twain My husband was just taken off work and driving and all he does is sit and play the same computer game all day. He is getting grouchier as the weeks go by Untitled Normal Page > It so often happens that the things that could help most are the ones > that the patient is most resistant to. it must be really hard for both of you! any chance you could interest him in taking up going for walks or going to some sort of actiivity he might enjoy? Kids sporting events, movies ...anything...? He might be more inclined to cooperate if you make it something that he can do "for you" .... rather than something you're doing to keep 'him' active and involved especially in the early stages, we found it a lot easier to get my MIL to cooperate with stuff if we framed it that way .... helpers were 'for me' ... I needed her to come with me while.... etc etc > My husband was just taken off work and driving and all he does is sit and > play the same computer game all day. He is getting grouchier as the weeks [quoted text clipped - 4 lines] >> It so often happens that the things that could help most are the ones >> that the patient is most resistant to. He doesn't seem to care about anything at all. I have tried to suggest everything I can think of but he just sits. Even tried to get him to play cards with me. He will take a walk but that only takes up an hour and then there he is sitting again. He doesn't have any hobbies. His work was all he ever was devoted to doing. I don't know how spouses deal with this apathy. He can't read as he forgets the plot Linda > it must be really hard for both of you! > [quoted text clipped - 7 lines] > cooperate with stuff if we framed it that way .... helpers were 'for me' > ... I needed her to come with me while.... etc etc > He doesn't seem to care about anything at all. I have tried to suggest > everything I can think of but he just sits. Even tried to get him to play [quoted text clipped - 4 lines] > > Linda How about some TV programs that don't have a plot? My mother in law enjoyed Animal Planet immensely, also she would laugh out loud watching the 3 stooges. We all enjoyed those together. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') >> it must be really hard for both of you! >> [quoted text clipped - 7 lines] >> cooperate with stuff if we framed it that way .... helpers were 'for me' >> ... I needed her to come with me while.... etc etc Amazing how a small thing can help so much! Thank you I didn't think of that. My grandkids love animal planet. Oh thanks for the idea :-) Linda > How about some TV programs that don't have a plot? My mother in law > enjoyed Animal Planet immensely, also she would laugh out loud watching > the 3 stooges. We all enjoyed those together. Linda, That apathy may also be depression. In these dementias, the neurochemicals can get out of balance, the same they do in depression. Anti-depressants helped my FIL immensely. He was able to continue his hobbies and help with housework instead of shutting himself in his room. Adelle > Amazing how a small thing can help so much! Thank you I didn't think of > that. My grandkids love animal planet. Oh thanks for the idea :-) [quoted text clipped - 4 lines] >> enjoyed Animal Planet immensely, also she would laugh out loud watching >> the 3 stooges. We all enjoyed those together. I pray that soon they will start him on something. We have been waiting 3 weeks for the cognitive testing to be approved but so far no progress. The Neuro doesn't want John on anything until after that test. Unless they can think of something new......I think we are at the end of tests LindaJean > Linda, > [quoted text clipped - 4 lines] > > Adelle > I pray that soon they will start him on something. We have been waiting 3 > weeks for the cognitive testing to be approved but so far no progress. The > Neuro doesn't want John on anything until after that test. Unless they can > think of something new......I think we are at the end of tests I know that you said one of the things you're waiting on is approval from your insurance company. One thing you can do is call them to find out who at the company is doing the case review, and talk to that person directly. They are like everyone else: to much to do with and not enough people to do it. The case folder is probably sitting on the corner of a desk, waiting for them to look at it. If you can get them to pull it out and take a peek, you'll get it moved up in the queue and things will happen faster. I used to call insurance companies for the hospital where I work. I learned very quickly that I had to make the person on the other end of line remember that we're holding someone's health & life in our hands and that waiting really isn't an option. Beth SignatureDon't go around saying the world owes you a living. The world owes you nothing. It was here first. ~Mark Twain I have been calling everyone to the point of crying. The doctors belong to a medical group. That group is saying I have to call the mental health division of Cigna and I ask for the test. When I did call them Cigna said no way this isn't a mental health issue but a medical one and the request goes thru normal channels from a doctor. Cigna even called the medical group and they show no request pending. Then I call the Neuro back and they say they put the request in twice etc and they call the Group....call me back telling me to phone the mental health ... and the wheel goes round n round till I cry. We have been doing this for 2 weeks with no progress. I have no idea why but the medical group doesn't seem to want to approve this as a medical issue and keeps tossing it back. I have gone over this with the woman in the Neuro office 4 times. At this point she is still "checking into it" LindaJean > I know that you said one of the things you're waiting on is approval from > your insurance company. One thing you can do is call them to find out who [quoted text clipped - 11 lines] > > Beth Linda, Every insurance company has either a patient advocate or an ombudsman whose sole job is to deal with this kind of limbo and untangling snafus. Maybe that's worth a try? Adelle >I have been calling everyone to the point of crying. The doctors belong to >a medical group. That group is saying I have to call the mental health [quoted text clipped - 27 lines] >> >> Beth I can't seem to find one connected with the "shared risk" people that are stalling me. I finally phoned a doctor that had seen John in a bad state 6 weeks ago. The doctor is 3 hours away. I told him my saga and he strongly recommended that I gather up my copies of everything and take John to the ER at UCLA. He told me to walk in and say "I am not a bitch. I want somebody to tell me something and I want that test done!" hehehe Doctor said to be firm but if nobody will listen to me to ask for a Patient Advocate. (Our PCP has referred us to another Neuro that is with the same group that keeps kicking back the request for the test.) LindaJean > Linda, > [quoted text clipped - 3 lines] > > Adelle >I can't seem to find one connected with the "shared risk" people that are >stalling me. I finally phoned a doctor that had seen John in a bad state 6 [quoted text clipped - 7 lines] > > LindaJean Dear LindaJean, You go girl! :-) And good luck at it. The patient advocate sounds like a good course to take. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') >> Linda, >> [quoted text clipped - 3 lines] >> >> Adelle LJ, this is just an idea but have you considered planning a day on which you take your records and camp out in the administrative office of the medical group and become the immovable object? Sounds unpleasant, I know but I remember having to wait 4 hours in my MIL's doc group's waiting room for just such a thing. My phone calls kept getting "accidentally disconnected" until I was ready to scream. It's amazing how I got my answers after they realized I wasn't going to go away. Took awhile, but they also never played that game on me again. Sometimes your calls may not even be making it past the front office staff. At a bare minimum, I'd point out to the docs that their unwillingness to prescribe anti-depressants until they get their test that they can't seem to get is putting you at a physical risk. You haven't mentioned if your hubby is suicidal but if he's gone quiet and surly, it's a possibility that needs to be considered. Karen > I have been calling everyone to the point of crying. The doctors belong to a > medical group. That group is saying I have to call the mental health [quoted text clipped - 11 lines] > > LindaJean John has said things like "if I get a diagnosis I will just go off and die" So interesting that you mentioned getting forceful as that is just the advice I was given last night regarding going to UCLA. I was told to take a backpack so I could spend the day <s>. How awful to think that even with insurance you must fight everyone to get help. I am not very good at being forceful I am more the type to back off and cry but I am sure trying! LindaJean > LJ, this is just an idea but have you considered planning a day on which > you take your records and camp out in the administrative office of the [quoted text clipped - 17 lines] > > Karen My mother in law benefitted greatly by going to the adult daycare center. Many people have simply called it the senior citizens center, to make it less daunting to those whose pride might feel offended. They had games, regular outings, entertainments, all sorts of crafts. Better than just sitting. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > My husband was just taken off work and driving and all he does is sit and > play the same computer game all day. He is getting grouchier as the weeks [quoted text clipped - 4 lines] >> It so often happens that the things that could help most are the ones >> that the patient is most resistant to. I am working on that with him thanks. Ours is called a Senior Center and we did join it but so far...... John is only 56 and he is balking at the concept of being old <wink> Linda > My mother in law benefitted greatly by going to the adult daycare center. > Many people have simply called it the senior citizens center, to make it > less daunting to those whose pride might feel offended. They had games, > regular outings, entertainments, all sorts of crafts. Better than just > sitting. >I am working on that with him thanks. Ours is called a Senior Center and we >did join it but so far...... > John is only 56 and he is balking at the concept of being old <wink> > > Linda So tell him they need some "young" folks like him to help the "old" ones! If he's still physically in good shape, he really could be a help to those who were unsteady on their feet, or need help picking things up off the floor, etc. There may be projects like stuffing mailings, etc., that will seem more like volunteer work and give him a sense of contributing. Does he like animals? Could he go play with the ones at the local shelter? They often need volunteers to help keep the animals loved up and socialized. Could he volunteer at the local food pantry with some direction (unload this box onto this shelf, for example)? I suspect part of the problem is depression which would only be normal after such a diagnosis, and often follows giving up the car and retirement, so poor man has a triple whammy. I would try to find a way not only to occupy his time, but to make him feel useful and that his life is still one of contribution to society. With some creativity, that would not even be a pleasant fiction but the truth. Songbird >>I am working on that with him thanks. Ours is called a Senior Center and >>we did join it but so far...... [quoted text clipped - 23 lines] > > Songbird Good points, Songbird. I think the key to the problem he is experiencing is the fact his work was his whole life. No hobbies or outside interests. Now is the time that sort of thing can come in handy. My husband and I always said we would never be bored as retirees, and it is the truth. We have so many hobbies and interests and there is always something to do, make, discover, fix, someplace to go, that we wonder how on earth did we ever find the time to hold down jobs? I know a woman who crochets. She makes all sorts of things for her church and for the veterans association and the hospital gift shop. It helps keep her hands flexible and her mind occupied. It is repetitive, but not boringly so. That type of thing might be good. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') I agree very much. This is going to be so much harder as he can't seem to have an interest in anything. We fought this morning because I asked him to take an hour a day for crossword puzzles hahaha Linda . > I think the key to the problem he is experiencing is the fact his work was > his whole life. No hobbies or outside interests. Now is the time that [quoted text clipped - 9 lines] > helps keep her hands flexible and her mind occupied. It is repetitive, > but not boringly so. That type of thing might be good. >I agree very much. This is going to be so much harder as he can't seem to >have an interest in anything. We fought this morning because I asked him to >take an hour a day for crossword puzzles hahaha > > Linda He's probably scared and depressed and confused. Try not to take his nastiness too personally, LindaJean. He probably is in a very bad space right now. Let him do whatever he wants. If he doesn't want to do crossword puzzles, OK. If I were you I would just wait till you get the results of all tests and then go on from there. Our doctor put Ida on antidepressant medication and it was a godsend for her. She was just so totally down before it kicked in and she was feeling better then. It is very hard to accept that you have a disease like this one is, and that it isn't going to get better. But that is no reason to make the time you do have together unhappy. Try to be as cheerful and ordinary as you can, and don't take a thing he says too seriously. Once you have a real diagnosis, some medication can probably be prescribed to keep him in a better state of mind. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > . >> [quoted text clipped - 11 lines] >> helps keep her hands flexible and her mind occupied. It is repetitive, >> but not boringly so. That type of thing might be good. I know you are right but it is so hard to cope when you darling calm loving husband starts screaming at you cuz you reached over and opened a window <wink> LindaJean > He's probably scared and depressed and confused. Try not to take his > nastiness too personally, LindaJean. He probably is in a very bad space [quoted text clipped - 9 lines] > diagnosis, some medication can probably be prescribed to keep him in a > better state of mind. >I know you are right but it is so hard to cope when you darling calm loving >husband starts screaming at you cuz you reached over and opened a window ><wink> Of course! It was totally irrational for him to scream at that. I just feel so bad for you both to have to go through this. :-( SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > LindaJean > > He's probably scared and depressed and confused. Try not to take his [quoted text clipped - 10 lines] >> diagnosis, some medication can probably be prescribed to keep him in a >> better state of mind. I just wish I knew when the last of the tests would be done. It has been 3 weeks of game playing between the Neuro, the medical group he belongs to and the insurance. At this pace it might be a couple of months like this. That kinda discourages me :-) I search online for any hint of something else it might be but there is nothing they haven't tested for......cept mad cow of course hahahaha So then what? Do they have to say it is AD or Mixed or vascular if they run out of tests? Ah the endless questions LindaJean >>I know you are right but it is so hard to cope when you darling calm >>loving husband starts screaming at you cuz you reached over and opened a >>window <wink> > > Of course! It was totally irrational for him to scream at that. > I just feel so bad for you both to have to go through this. :-( >I just wish I knew when the last of the tests would be done. It has been 3 >weeks of game playing between the Neuro, the medical group he belongs to [quoted text clipped - 3 lines] >cow of course hahahaha So then what? Do they have to say it is AD or Mixed >or vascular if they run out of tests? Ah the endless questions Of course, those are medical questions, and only your doctor can answer them as time goes on and all the tests are complete. Did they test him for Normal Pressure Hydrocephalus? It would be great if he had that, because it is reversible. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') Is that a lumbar puncture? That one test not yet and the Neuro said he may not do it as John doesn't have the symptoms by why the heck he think we may test for mad cow is beyond me LindaJean > "LindaJean" <lppnp@xyahoo.com> wrote in message > [quoted text clipped - 3 lines] > Did they test him for Normal Pressure Hydrocephalus? It would be great > if he had that, because it is reversible. > Is that a lumbar puncture? That one test not yet and the Neuro said he may > not do it as John doesn't have the symptoms by why the heck he think we > may test for mad cow is beyond me I don't exactly know how they test for it, but it does look like and act just like alzheimers, except it is a reversible condition. NPH.... look it up if you have a chance.... Normal Pressure Hydrocephalus. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > LindaJean >> "LindaJean" <lppnp@xyahoo.com> wrote in message [quoted text clipped - 4 lines] >> Did they test him for Normal Pressure Hydrocephalus? It would be great >> if he had that, because it is reversible. I just did and that is the spinal tap. There are other primary symptoms and John has none of them. Just the dementia. Thanks for the info tho :-) I need all the info I can get LindaJean > I don't exactly know how they test for it, but it does look like and act > just like alzheimers, except it is a reversible condition. NPH.... look [quoted text clipped - 8 lines] >>> Did they test him for Normal Pressure Hydrocephalus? It would be great >>> if he had that, because it is reversible. They test for normal pressure hydrocephalis by boring a hole in the front part of the skull and measuring the pressure in the brain. That is what they were testing Grayson for when he started bleeding and they could not get it stopped. Took them five hours to stop it; said they ran into so many tangles they could not tell what they were doing. Gwen + >> Is that a lumbar puncture? That one test not yet and the Neuro said he >> may not do it as John doesn't have the symptoms by why the heck he think [quoted text clipped - 12 lines] >>> Did they test him for Normal Pressure Hydrocephalus? It would be great >>> if he had that, because it is reversible. > They test for normal pressure hydrocephalis by boring a hole in the front > part of the skull and measuring the pressure in the brain. That is what > they were testing Grayson for when he started bleeding and they could not > get it stopped. Took them five hours to stop it; said they ran into so > many tangles they could not tell what they were doing. > Gwen Sounds pretty extreme. I never heard about that...... SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > + >>> Is that a lumbar puncture? That one test not yet and the Neuro said he [quoted text clipped - 13 lines] >>>> Did they test him for Normal Pressure Hydrocephalus? It would be >>>> great if he had that, because it is reversible. oh heavens I didn't know. I am so sorry. When I googled it there came up about the lumbar puncture and how that was done to find the problem LindaJean > They test for normal pressure hydrocephalis by boring a hole in the front > part of the skull and measuring the pressure in the brain. That is what [quoted text clipped - 20 lines] >>>> Did they test him for Normal Pressure Hydrocephalus? It would be >>>> great if he had that, because it is reversible. The Neuro doesn't want John put on any meds until after they do the neuro-phsy test and test for mad cow disease. I think if he was put on something to lighten his mood just a little it would make a big difference for us both. He snaps at me often and seems to feel this is all my fault. He convinces himself he shouldn't move too much or try to think too much as it might make "it" worse. He was taken off work with "Cognitive Loss". John says that doesn't mean he can't think straight! Trying to defend myself constantly is tough. He got mad at me last night because I can home and it was 85 inside and my dog was panting so hard I opened the windows all the way. That meant to him that "nothing he did was right and he turned on fans to help the dog". Lord, I am just so tired. Sorry I am whining and I know there are many here in worse trouble than I have Linda >>I am working on that with him thanks. Ours is called a Senior Center and >>we did join it but so far...... [quoted text clipped - 23 lines] > > Songbird I would have to wonder if he's pulling a trick kids do sometimes -- when they think they are unlovable, they work really hard (behaviorally) to prove it so when they manage to drive their friend away, they can say "I knew this wouldn't last". I remember watching an acquaintance go through several "would-be" friends and drive them all away. It's not logical, but people often aren't. If he defined his personal value by his work, he probably feels pretty worthless about now. Have you considered trying to get him to go to a marriage counselor with you to "help _you_ deal with things"? Considering the hand you've both been dealt, you'd be in denial if you weren't having problems. You aren't whining -- you're letting off steam and looking for answers. That's a totally rational approach. Karen > The Neuro doesn't want John put on any meds until after they do the > neuro-phsy test and test for mad cow disease. I think if he was put on [quoted text clipped - 10 lines] > > Linda That is a very good idea. Thank you :-) Yes I had considered it but with so much going on I am doing my best just to juggle doctors and his moods so I let it drop. LindaJean >I would have to wonder if he's pulling a trick kids do sometimes -- when > they think they are unlovable, they work really hard (behaviorally) to [quoted text clipped - 15 lines] > > Karen I remember being told to take care of myself and I thought I didn't have time. In my case, it caught up with me in a major way after awhile. Even if it's just walking the dog or such, try to do something to lower your personal stress levels. And make sure you keep up all of your normal health care items (well woman's, mammograms, etc.). The body can produce some unpleasant responses to constant stress and the 40's and 50's are stressful enough for women under normal circumstances. I know it's been said on this NG before, but it's like they tell you on a plane in case of cabin pressure loss "take care of yourself first so you are able to take care of loved ones that need assistance". Karen > That is a very good idea. Thank you :-) > Yes I had considered it but with so much going on I am doing my best just to > juggle doctors and his moods so I let it drop. > > LindaJean ----snip---- > > If he defined his personal value by his work, he probably feels pretty > > worthless about now. Have you considered trying to get him to go to a [quoted text clipped - 6 lines] > > > > Karen You people in here are very helpful. I have been having headaches and my weight is getting too low. I realize I am stressed but try to hang on until they will give John something just to calm him a little. It is tough being yelled at for opening a window <wink> LindaJean >I remember being told to take care of myself and I thought I didn't have > time. In my case, it caught up with me in a major way after awhile. [quoted text clipped - 14 lines] > > Karen >So tell him they need some "young" folks like him to help the "old" ones! If >he's still physically in good shape, he really could be a help to those who >were unsteady on their feet, or need help picking things up off the floor, >etc. There may be projects like stuffing mailings, etc., that will seem more >like volunteer work and give him a sense of contributing. That's hardly going to be helpful! A diagnosis of dementia does not mean that he's become stupid overnight! Early retirement, for men, is far too often more like a prison sentence - even for those who hated their jobs. There is a loss of male companionship, a loss of status from demotion to "household duties" and a subservience to wives who become dominant in "their" home. Men invariably lose contact with their past workers whereas women retain their friendships longer. At the same time, women become more assertive and men subservient. While men's friends are primarily from work relationships, women's are from the bonds of bringing up the children. You can guess much of what I'd say if I continued but I'm not making too much sense this morning so I'll let the frocks jump in here :-p >Does he like animals? Could he go play with the ones at the local shelter? >They often need volunteers to help keep the animals loved up and socialized. [quoted text clipped - 10 lines] > >Songbird -- 2 + 2 = 5 for sufficiently large values of 2. I've often wondered if it isn't a chicken and egg type of problem. Do they become resistant to exercise because it doesn't feel "right" (like the bathing issues discussed previously) or do they deteriorate faster because they aren't exercising? Kind of like the studies that show people who pursue challenging mental task have a lower incidence of Alzheimer's. Does the challenge keep the Alzheimer's away or is it that people that are not developing Alzheimer's are able to pursue more challenging things? I suspect it's the last one, but I'm not a research scientist. Karen > That's indeed a problem. They have regular light exercise sessions > at the home, but she didn't participate. Her husband, when he was healthy [quoted text clipped - 4 lines] > It so often happens that the things that could help most are the ones > that the patient is most resistant to. ---snip--- I read an interesting research paper about a study done with a large groups of nuns. You might be able to find some of it online. The doctor was monitoring them for years and was allowed to autopsy the brain when each passed. He found that of those nuns that kept learning and kept busy they showed little if any signs of AD. It was more often the "laid back" nuns that had dementia. The interesting part to me was that upon examination.....of the active nuns several showed marked damage from AD but exhibited no signs during life. While the quiet nuns showed far more symptoms but not more damage. He figured that the brain stimulation caused the neurons to build multiple pathways so that when disease took some the brain could get around it LindaJean > I've often wondered if it isn't a chicken and egg type of problem. Do > they [quoted text clipped - 21 lines] >> that the patient is most resistant to. > ---snip--- >I read an interesting research paper about a study done with a large groups >of nuns. You might be able to find some of it online. The doctor was [quoted text clipped - 7 lines] >the neurons to build multiple pathways so that when disease took some the >brain could get around it Hardly sounds like double-blind research. -- 2 + 2 = 5 for sufficiently large values of 2. >Hardly sounds like double-blind research. Forgive the sarcastic nature of my earlier post. At the time of posting, I wasn't aware the O.P. didn't have a URL. -- 2 + 2 = 5 for sufficiently large values of 2. > I read an interesting research paper about a study done with a large groups > of nuns. You might be able to find some of it online. The doctor was [quoted text clipped - 7 lines] > the neurons to build multiple pathways so that when disease took some the > brain could get around it Several years ago, "Time" had a cover story on just that subject. The researchers interviewed every member of the convent at least once per year, and they dug into the educational and social backgrounds of all of their study subjects. They found an overwhelming correlation between those whose activities from early childhood on did not include higher brain functions with those who showed signs of dementia. Those whose activities required higher brain functions were generally asymptomatic for dementia if their brains did show decay on autopsy or there was no decay at all. We believe that is what kept my grandmother from showing any symptoms for 10 years, while my grandfather (her husband) was symptomatic and in decline for that entire time up to his death. She took care of the family finances all of their married life (almost 60 years). It wasn't until she was diagnosed with macular degeneration and lost about 80% of her sight that she had to give up her financial activities. The mental decline after that was significant and swift. Beth SignatureDon't go around saying the world owes you a living. The world owes you nothing. It was here first. ~Mark Twain I think that is why I want John to do something for at least an hour a day that makes him think. He read a paragraph online where pushing someone with dementia to do things they are no longer capable of can harm them by reinforcing how far they have slipped. This is now his reason for sitting watching reruns 10 hours a day :::sigh::: LindaJean > Several years ago, "Time" had a cover story on just that subject. The > researchers interviewed every member of the convent at least once per [quoted text clipped - 15 lines] > > Beth >I think that is why I want John to do something for at least an hour a day >that makes him think. He read a paragraph online where pushing someone with [quoted text clipped - 3 lines] > > LindaJean LindaJean, there is a lot to be said for that paragraph he read online. There was a guy who came here a couple of years ago whose wife was just diagnosed. He was determined to "train" it out of her by drilling her with flashcards and trying to make her think like a normal person. All I could think was how cruel that was. I may be wrong but I don't think that at the point a person is already diagnosed that this can really be reversed. I think that in the cases you hear of like the nuns study, these were people who enjoyed using their minds all of their lives, not suddenly at a crisis point when half of who they were, was already noticeably slipping. But some re-entry into society and enjoyment of life can definitely happen under the right circumstances. I am all for trying to keep active interested and involved as much as possible, however. Life should be enjoyable as we can make it, no matter who it is or what illness they have. Quality over quantity... that sort of thing. But that is only my opinion, and an unprofessional one at that. I do know that when my mother in law came here to live, she was stimulated mentally, by enjoying parties and social events, company that came to visit, going to daycare, being taken out to restaurants occasionally, all things she had pretty much stopped for years while on her own. She had forgotten to get her hair styled or how to shower and groom herself nicely, and when she came here all that was restored. By getting good nutrition, regular baths, proper medication for her depression and interacting with people, she re-found her interest in life. She didn't have to worry about having proper clothing or looking nice, all that was done for her. She enjoyed the daycare center, though she groused about going every day of her life, out of habit. The staff went out of their way to make her feel loved, comfortable, happy, involved and stimulated. All of that went a long way towards keeping her functional as long as possible. The illness does have its way ultimately, but that is no reason to stop living or enjoying whatever they can. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') okay you have more knowledge by far than I do :-) I just read where trying a little was a help in keeping the mind going. I will let him sit as long as his doctor thinks that is best at this point. It is hard to watch him be a vegetable in just a few months LindaJean > LindaJean, there is a lot to be said for that paragraph he read online. > There was a guy who came here a couple of years ago whose wife was just [quoted text clipped - 35 lines] > possible. The illness does have its way ultimately, but that is no > reason to stop living or enjoying whatever they can. LJ, I suspect you may see an improvement when he can take an antidepressant. The behavior you're describing sounds more like the behavior a guy exhibits when he loses his job. (ever see the movie "Mr. Mom"?) I won't say it's not complicated by the cognitive loss, but it may be something only he can affect for the better Although I'm sure you could make it worse, you can't fix it. Think of it like trying to pull someone out of a ditch that doesn't want to be moved. Karen > okay you have more knowledge by far than I do :-) I just read where trying a > little was a help in keeping the mind going. I will let him sit as long as > his doctor thinks that is best at this point. It is hard to watch him be a > vegetable in just a few months > > LindaJean yes I like that movie :-) John has good reason to be grouchy just that it is a bit over the top sometimes lol LindaJean > LJ, I suspect you may see an improvement when he can take an > antidepressant. [quoted text clipped - 8 lines] > > Karen > okay you have more knowledge by far than I do :-) I just read where trying > a little was a help in keeping the mind going. I will let him sit as long > as his doctor thinks that is best at this point. It is hard to watch him > be a vegetable in just a few months Linda, here are a couple of possibilities, I am sure you could come up with more. Invite friends over. Take a walk together and look at the beautiful fall foliage. Go to a restaurant, or a movie. Watch a funny TV show. Cook up a pot of soup together & Get him helping you chop vegetables. Talk about old times, when he was a child. People with AD love to reminisce! Do whatever you can to keep him going, but if he isn't into puzzles, I don't think you are going to be successful to get him started at them now. Believe it or not my mother in law suddenly was crocheting hats out of yarn with my next door neighbor who we paid to watch her. The two of them made so many nice hats and the neighbor donated them to the church to sell. I never even knew my mother in law knew how to crochet! But apparently that old interest came back to her when she saw my neighbor doing it, and she handed her the hook and the yarn and off she went! When your husband was a young man or a boy, did he enjoy some craft? model making or something like that? Something he did for fun that he was good at? He might be tempted to try it again now. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') 101 Things to do with a Person with Alzheimers' 1. Clip coupons 2. Sort poker chips 3. Count tickets 4. Rake leaves 5. Use the carpet sweeper 6. Read out loud 7. Bake cookies 8. Look up names in the phone book 9. Read the daily paper out loud 10. Ask someone with a child to visit 11. Listen to Polka music 12. Plant seeds indoors or out 13. Look at family photographs 14. Toss a ball 15. Color pictures 16. Make homemade lemonade 17. Wipe off the table 18. Weed the flower bed 19. Make cream cheese mints 20. Have a spelling bee 21. Read from the Reader's Digest 22. Fold clothes 23. Have a friend visit with a calm pet 24. Cut pictures out of greeting cards 25. Wash silverware 26. Bake homemade bread 27. Sort objects by shape or color 28. Sing old songs 29. "Tell me more" when they talk about a memory 30. Put silverware away 31. Make a Valentine collage 32. Play favorite songs and sing 33. Take a ride 34. Make a cherry pie 35. Read aloud from Ideals magazine 36. Play dreidels 37. Make a basket of socks 38. Take a walk 39. Reminisce about 1st day of school 40. String Cheerios to hang outside for birds 41. Make a fresh fruit salad 42. Sweep the patio 43. Color paper shamrocks green 44. Fold towels 45. Have afternoon tea 46. Remember great inventions 47. Play Pictionary 48. Paint a sheet 49. Cut out paper dolls 50. Identify states and capitals 51. Make a family tree poster 52. Color a picture of our flag 53. Cook hot dogs outside 54. Grow magic rocks 55. Water house plants 56. Reminisce about the first kiss 57. Play horse shoes 58. Dance 59. Sing favorite hymns 60. Make homemade ice cream 61. Force bulbs for winter blooming 62. Make Christmas cards 63. Sort playing cards by their color 64. Write a letter to a family member 65. Dress in your favorite football team's color 66. Pop popcorn 67. Name the presidents 68. Give a manicure 69. Make paper butterflies 70. Plant a tree 71. Make a May basket 72. Make homemade applesauce 73. Finish famous sayings 74. Feed the ducks 75. Mold with play dough 76. Look at pictures in National Geographic 77. Put a puzzle together 78. Sand wood 79. Rub in hand lotion 80. Decorate paper placemats 81. Arrange fresh flowers 82. Remember famous people 83. Straighten out underwear drawer 84. Finish Nursery Rhymes 85. Make peanut butter sandwiches 86. Wipe off patio furniture 87. Cut up used paper for scratch paper 88. Take care of fish tank 89. Trace and cut out leaves 90. Ask simple trivia questions 91. Finish Bible quotes 92. Paint with string 93. Cut out pictures from magazines 94. Read classic short stories 95. Put coins in a jar 96. Sew sewing cards 97. Put bird feed out for the birds 98. Clean out a pumpkin 99. Reminisce about a favorite summer 100. Roll yarn into a ball 101. Make a birthday cake SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') thank you! LindaJean > 101 Things to do with a Person with Alzheimers' > [quoted text clipped - 199 lines] > > 101. Make a birthday cake Interesting reading... www.nunstudy.org takes you to this link http://web1.mccs.uky.edu/nunnet/faq.htm or the nutshell approach http://www.stpt.usf.edu/~jsokolov/agealzh2.htm > I read an interesting research paper about a study done with a large groups > of nuns. You might be able to find some of it online. The doctor was [quoted text clipped - 9 lines] > > LindaJean Sorry to post on this thread late. My mothers mind deteriorated well before her body did. She was in the NH for 2 years. The first year she was going down hill mentally but her body was still in great shape. Then her body starting going down hill fast in the secondd year to a point that she was in a wheelchair full time. Her right leg was always raised up slightly in the air with it going in and out as if to push soomething out of her way, constantly. She was always bending at the knee. She couldn't hold her head up by the end of the second year. Then she passed on. She took medication for high blood pressure. It just dawned on me this November will make one year since she left us. She's in a better place. My mother-in-law was a healthy 80 year old when she went to live in an Alzheimer's facility less than a year ago. She could walk well, stand erect, handle her personal needs, etc. In just the last few months she's deteriorated very rapidly. She now shuffles instead of walks. She's bent way over and to the side. She sits on a chair with her whole body slanted and her head drooping. She shakes. She can't handle stairs. She can't dress herself or go to the bathroom alone. She can barely eat without help. Her mental state also seems to be deteriorating rapidly. <<<<<<< The best information I was given by one of the nurses at my mothers alzheimers home was to read and learn everything I could about dementia's ... then throw it all out as each person and case will follow their own course. There are no steadfast "rules", only guidelines. As far as the deterioration. We had to put my mom in the home about 2 years ago, some confusion, sundowning in the wee hours to the point of danger, no longer able to care for herself. At this point she knew where she was, knew why, but didn't quite understand it and would not remember answers for more than a few minutes. Things progressed rather "normally" for about a year. I remember taking her out to breakfast last Thanksgiving, she could maneuver getting in and out of the car, ordering at a restaurant and feeding herself - did not remember going out or why we were out though. lol Took her to my house at Christmas, told my siblings this would be the last time we would take her out. She could not remember to bend legs to get into a vehicle, could only shuffle walk and that with assistance (I had to keep prompting her to move her legs). She could not feed herself any longer, had no idea who any family members were, and had no idea what Christmas was. That was in a 1 month course of time. She deteriorated even quicker from that point on. Each visit brought a new discovery to us ... not talking, wheelchair bound, not eating at all even with assistance, etc. She finally let go and passed peacefully mid march. Even that was quick - we received the call that she was failing in the evening, made the 20 minute drive - she was gone by the time we reached her. I am much different from the rest of the family, as I viewed the rapid deterioration (after the initial shock) as a blessing ... less time for mom to be scared, to be confused, confined, helpless, in pain, etc. I never looked at what was best for "me", as I don't think I'd ever be ready to say goodbye - but it was definitely what was best for her. Talk to the staff, see what they think, how best to handle things. When mom got to the point where she was confined to the chair, not speaking, not eating, etc. - they made the suggestion that we change her to hospice care as they felt this was the beginning of the end - such as the body beginning to shut down. It was a bit emotionally frightening, but the best thing I ever could have done for her. She had more care, more company, more loving attention and more peace. Joyce >My mother-in-law was a healthy 80 year old when she went to >live in an Alzheimer's facility less than a year ago. She [quoted text clipped - 31 lines] > >Thanks. WW starting weight: 228.8 - 2/5/02 current weight: 131.0 total loss: 97.8 Lifetime: 4/4/03 Hey Joyce, how U be? My Mom has not been rapid. We are really beginning to be nurses here now though. SignatureLesanne > The best information I was given by one of the nurses at my mothers > alzheimers [quoted text clipped - 102 lines] > total loss: 97.8 > Lifetime: 4/4/03 |
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