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Medical Forum / Diseases and Disorders / Alzheimer's / January 2006This keeps getting worse and worser
Hi all I have been posting re my husband who has been in hosptial for nearly 5 weeks now while having been diagnosed with dementia. Although there appeared to be a possibility they may release him as he is physically not too bad I am still hoping they will place him in a nursing home due to the aggression, delusions and hallucinations he is still having. I have already made it clear to the doctors and social worker that if they release him I will move out and on their head be it. In the past week or so he has had delusions about having bought a car, having been held down by the doctor to have blood taken, having rung his lawyer (because the senior partner gave him his private number you know) and many other things, none of which is true and I told the nurses a few days ago I would not come back to the hospital unless I was needed because my presence seems to make him more aggressive and he has stated he doesn't want me there. Now apparently his brother is questioning the fact that I say he has been diagnosed with dementia and he hasn't seen any written evidence of that. I am so angry that he is doubting what I have told him, especially when he has been at the hospital and my husband did not remember his other brother went back to England in 1973, his mother died 4 years ago and he denied he had a younger brother who is 40 years old, but no his brother doesn't have dementia cause the doctors haven't told him that. To think I have been to hell and back agonising over the fate of my husband and finally accepting he should be placed and this man, who might not see his brother from one year to the next, is casting aspertions on what I am telling him. I should ask him if he can find room for my husband to move in with his wife and kids, that would change his view I have no doubt. Will this nightmare ever end? I am so tired and depressed about all this I do not know why I bother sometimes. Liz > Hi all > [quoted text clipped - 39 lines] > > Liz Liz, if there is one thing we hear around here all the time, it is about friends or family members who are in denial about the illness. I have told it many times before, but when my mother in law was diagnosed nobody believed it but us. I couldn't imagine for the life of me how anyone could deny the woman was in bad shape, but they did, and she stayed alone for many months after she had been diagnosed and the doctor had told us she shouldn't be left alone anymore. This was not because we didn't care, but because everyone around her denied she was really as sick as she was. She could hold a reasonably good conversation on the phone, and pull herself together for a quick visit, but anyone observing her for a while would see that something was VERY wrong. It had to get very bad before we could essentially rescue her, and when we did her life changed for the better and she was actually happy for a time. You have gotten some very good advice around here, and I think the best advice was what someone (not sure who) said the other day about treating it from a family law standpoint, as in getting a separation in place as soon as possible, or else one day they could release him and he could be on your doorstep again.  SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') My prayers are with you. I wish I was able to say something to help. LJ > Hi all > [quoted text clipped - 39 lines] > > Liz > Hi all > [quoted text clipped - 15 lines] > nurses a few days ago I would not come back to the hospital unless I > was needed IMHO A BIG MISTAKE!!!! That gives them carte blanche to involve you in everything, and may well encourage them to believe that with some careful management he can go back to your place. Tell them not to call you until he is in a home or to discuss which home. Of course, if he was fine, and there was nothing wrong with him, the hospital wouldnt need to call you, would they? A well person, even a physically frail but mentally OK person, doesnt need the hospital to call someone else, even a spouse, to ask what should be done, they can deal direct with the person. The fact they seemingly cant, should speak volumes to anyone involved, including his brother. BTW how do you know it was a delusion that a doctor held him down to take blood? From the agressive mood you report, it sounds quite likely to me. The thing to question is, why would a 'normal' person *need* to be held down to give a blood sample? > because my presence seems to make him more aggressive and he > has stated he doesn't want me there. > > Now apparently his brother is questioning the fact that I say he has > been diagnosed with dementia and he hasn't seen any written evidence of > that. First of all this is all very third hand...... 'apparently' ....how do you know this, who told you and what has it got to do with them? Anyway, tell his brother he can have him at his house for a few days, tell him you have changed the locks (do change them) and arent letting him back in. I strongly suspect that after a day or two with him, your brother wont be needing written evidence any more:-) And GET. A. LAWYER. NOW. SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com Liz, Tumbleweed said it so much better than I did (below). He's right, you know..... SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') >> Hi all >> [quoted text clipped - 47 lines] > > And GET. A. LAWYER. NOW. > And GET. A. LAWYER. NOW. what he said. and then some. dunno what aussie solicitors cost, but you need one yesterday. not the same one he uses, either, but one to represent YOU. after all, you were the wage earner for the past nn years, right? do NOT put this off. having a lawyer means that when hospitals, doctors, social workers, etc. start to give you a bunch of horse puckey, you can simply say "well, i need to talk to my attorney about that..." to wake them up, and sending a stiffly worded letter to them on a law firm's letterhead gets their immediate attention! How right you are Dennis The aussie legal system is not cheap but here in S Aust we have legal aid depending on your financial situation. Unfortunately,The fact Liz has been the wage earner for 9 years will not hold weight at least that appears to be how it is here in S Aust. However under all her present circumstances I would be bailing out and fast I agree with the comment tell his brother to have him Now this may seem to some an uncaring attitude but with what I have read from Liz that woman needs a break Thanks Michelle You are right the fact that I have been the sole bread winner for the past 18 years means nothing in the Courts as they look at his needs, which are pretty high at the moment and for the rest of his life. However I thought perhaps I had gotten a break this week when my husband seemed so much better than he had been. He had been OK physically for a few weeks now and even did the OT test of making a cup of tea and a piece of toast. I was sure that they were going to say he was OK to come home (and under the law here he is still co owner and I cannot stop him from coming home) and I was thinking that I would need to find somewhere else to live because of his aggression. The past four visits, including today, I could see the man I knew before all the aggression took hold and he had told me that he had been sick but was much better. No aggression, very calm, laughing and joking, and even wrote me a note today telling me how to adjust the TV and signed it Love Dave. So I thought perhaps things were not too bad, although I knew it would happen again I thought perhaps we might have a while before it did. Well it happened again tonight. He started by telling me he could see a man that was not there, he recognised it from previous hallucinations and then he went into the trance like state again, shaking and trying to say something but not being able to move for about 10 minutes and was really upset when he came out of it as he knew it meant he was not better and said he would need a 24 hour carer. He said he could hear me and the nurse but could not remember what we said to him. Despite all the crap he has put me through over the years I still care for him and it is so sad to see him going back to that state yet knowing that this may help me get him a place in a nursing home. Sometimes I feel like a real bitch, although all I am is trying to get through this. It seems he is confusing the doctors because of the level of improvement in him but now this is a step backwards again for him. One day at a time Liz > How right you are Dennis > The aussie legal system is not cheap but here in S Aust we have legal [quoted text clipped - 6 lines] > Now this may seem to some an uncaring attitude but with what I have > read from Liz that woman needs a break > Sometimes I feel like a real bitch, although all I am is trying to get > through this. [quoted text clipped - 4 lines] > One day at a time > Liz It sounds to me that you have done all you can. Sometimes life's a bitch. Give yourself a break ...you deserve one......June It really does sound like Lewy Body or other frontal lobe dementia with the hallucinations and wild fluctuations. M Hi Mary My husband was diagnosed with Lewy Body dementia but from all I have read about it the fluctuations appear more closely together? He has only been improving for the past three weeks and there has been no sliding back in his abilities etc, only moving forward, until yesterday. He has had an MRI showing atrophy to the frontal lobe and has certainly displayed symptoms of Picks disease but he has been doing so well that the specialist was doubting whether it was dementia at all. Guess they may feel differently tomorrow when he sees them again. He is shattered that he has had this 'fit' as he calls it, but it may make it easier to get him to agree to be placed in a nursing home in that he has recognised the danger in these 'fits' to himself. I would certainly prefer that this can be done amicably. Only time will tell Liz > It really does sound like Lewy Body or other frontal lobe dementia with > the hallucinations and wild fluctuations. > > M http://www.zarcrom.com/users/alzheimers/odem/lewy7.html >From what I've read, the fluctuations can be from day to day - or from week to week. Keep in mind, he may be fluctuating in ways that are not readily apparent to the staff in terms of cognition. You are sensitive to the BIG changes in aggressiveness or the zoning out, but given that its not possible to do mental tests on him daily, who knows whats actually going on - he may be quite good at concealing fluctuations from the staff. He's also in comparatively early days with this thing, so if he's having a good day, he's going to look much more normal than someone further along - and human nature is to believe what we see at the time (fairly young healthy man, behaving normally, he must be peachy fine okay!). Many of us have had the experience with our loved ones even in mid AD where friends and relatives think the person is perfectly fine. A healthy physical appearance combined with an intact personality and ability to carry on a social conversation can fool a LOT of people, including many professionals. I doubt Lewy body is any different. As I've often mentioned, if you had met my MIL in a social setting, and I didn't tell you she had AD, I doubt you would have guessed. Her doctor saw her frequently (at least monthly and usually more often), had known her for years and years, and he had absolutely no inkling there was a problem until I brought the subject up. He ran some basic cognitive tests in the office, and I honestly think he was much more shocked than I was, since he had been so totally oblivious to what were very glaring deficits on testing - and her's weren't fluctuating like your husband's. Every time she'd been to see him for months on end, she'd had major memory and cognitive deficits and he just didn't see them because he wasn't looking, so if she did have a slip, he'd have attributed it to something benign like tiredness, stress, being distracted etc. Mary > http://www.zarcrom.com/users/alzheimers/odem/lewy7.html > [quoted text clipped - 35 lines] > > Mary Tim's sister would visit with us for several hours every few weeks or so. Even knowing about his surgery and brain tumor years ago she just didn't "see" a problem other than he was "having a bad day". She was just shocked when I emailed her telling her what I was concerned was happening and asking for her input on what she might have noticed. I believe after he was diagnosed it all kind of fell into place for her but before that - he always had a "bad day" on the days she visited?! If Tim himself hadn't been concerned about the changes he was seeing in himself I don't know if I would have been able to get his doctor to take a hard look at his deterioration. Things could have gotten close to being unbearable if Tim hadn't been honest with himself and with his doctor. ~karen~ read Capgrass syndrome on the net these seem to me psychotic episodes similar to what Mum suffered before going on Risperdal which was first introduced for Scizophrenia Hi Michelle I did have a look at the Capgras stuff but apart from being delusional this does not seem to match what mr husband has, but thanks for the suggestion. Liz Just a thought - Has your husband been screened for epilepsy? Through friend of a friend, I know of someone who has epilepsy centered in the frontal lobes. He gets very paranoid and 'protects' himself by getting violent during and for some time after an episode. He gets aural delusions in the form of hearing bells before an episode comes on, so he can often get to an Emergency Department, or other safe place to be physically or chemically restrained. Luckily, he found a medication regimen which has really helped and he hasn't had an episode for a very long time. Just something to think about, given the episodic nature of your husband's symptoms. Adelle > Hi Michelle > > I did have a look at the Capgras stuff but apart from being delusional > this does not seem to match what mr husband has, but thanks for the > suggestion. > Liz |
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