My lo has been at JH Bayview Lakeside Unit for 9 days to adjust her medications. They have her on Zyprexa. A few days ago she was very drugged, but less agitated and strapped into that geri chair. Yesterday, she was so improved. Her head was still tilted to the side (dystonia, torticollis) but she was not trying to get out of the chair and she was speaking real words. She was participating in the ball playing activity. She had some jerks of her hands and body once in a while. I felt good about her improvement. Today they called to tell me that she was now on cogentine to counteract the neck bent to the side and that she had bruises from the first days when she kept bumping into objects. The cogentine probably hasn't been in her system long enough to help.
I guess her family thinks visiting at the hospital (not at our home) is important and they are there now. Could be good but could be bad. They called to tell me that her neck is sticking out (like a big lump) and she can't talk, she's just making sounds in her throat, that she's very stiff and her body is jerking constantly. She can't eat and she hasn't slept. Of course, that's not the report I had given them when they called yesterday. So, they are transferring her to the hospital at Bayview. I am worried that the hospital will do more harm than good. The doctor's at the Lakeside Unit should be keeping track of these reactions but maybe they were missing something. Did her family interfere in a dangerous way for her? What will happen now? It's too far to run up there and I don't want to interfere with her brother. He's a good person and I'm sure he was troubled by her appearance but I'm helpless and very worried. Maybe he was right, the medication's side-effects were just too dangerous but because he was upset they're going to transfer her to the hospital. Some of you didn't have good experiences with hospitals and I'm worried.
I'm sorry that you have this additional worry, but from what you've written, it seems that she needs to be in the hospital right now. My experiences with hospitals have been positive, and I hope the same will be true for you. I'm glad that your brother-in-law is in the picture and is a good person. That means a lot to have someone there who is vigilant and concerned.
i hope they can iron out her medications in a safe environment. its would sound that the zyprexa isnt having a very good effect on her physically with the side effects so prominant. its my opinion but only mine, that only one person should be in charge of decisionmaking. and thats the spouse. but if you have confidence then maybe the brother will be of benefit. maybe you could call the attending drs and ask about all these obvious side effects. there are many drugs they can try if one doesnt work. divvi
It's my opinion too which is why I'm a little angry but trying to stay calm. I know he's reacting out of shock and concern but I should have been called first!!!!! Too late now so I'm trying hard to deal with this. I immediately called the unit and she explained what had happened but she was already on her way to the emergency room. It shouldn't have happened that way but it did. Now I have to deal with it in a way that's good for her and won't alienate her family since what's done is done. I will be there nice and early tomorrow morning and will insist she go back to the Unit and speak to their doctors. They visit her once in a year and think they can make these decisions. I'm not happy about this.
diatron, its good you are seeing it rationally then. of course you arent happy. but for her sake hopefully it will work out for the good and she will look better when you see her. if it were me, i'd be taking my power of atty copy to the facilities she visits and lives at and make sure they know you are the one to make the decisions regarding her care. no one else has the authority. i am not really sure how the brother got that done since hes not her guardian or legal caregiver. but thats not important. yes for sure discuss with the doctors that you are not happy with the obvious side effects. they always want to say give the meds time. but in our world we know if something is not working or is. yes shes calmer but at what cost. it is going to take some time but they should be able to find a workable combo of meds that can give her a good quality of life. let us know how you and she are doing. ps my DH was on zyprexa for awhile and did not exhibit these symptoms. but marilyns steve did.
Yes, I was encouraged because Marilyn had said this was what had happened to her husband. This was exactly the sequence she experienced and she even gave me the right medical words to use. I just spoke to the ER doctor and told her that I'm grateful that her brother came to visit and that he was concerned but I wanted to give her the history myself. The POA/Medical Directives are all on file. She listened to me give her the history and background and said they were going to run some tests just to make sure she was medically okay. I told her that if they didn't find anything medically wrong, I wanted her back in the Lakeside Unit so they could continue managing the medication. And, I repeated that I am grateful that her family went to visit and that they are with her but that I make the decisions. She said she will call me back after they finish assessing her. She got it and I think will also be tactful with her family. This is hard for me and unfamiliar and frightening because she has never been sick, never been to the hospital, never had surgery and I haven't had to deal with handling hospitals.
Wow, I just don't know what to say to be helpful to you. I know if this happened to me I would be on the phone with Lakeside trying to figure out how it happened in the first place! And to make sure it never happened again. Only I have the authority to send Lynn to the hospital. I can't understand if they had the POA on file why they released her into the care of her brother, boggles the mind.
I will be hoping for the best for your DW. With the worry of meningitis are you planning on going tonight? Please keep us informed when you are able. I will be keeping you both in my thoughts ((hugs))
Diatron--so sorry to read what's going on. Your wife's reaction to the Zyprexa sounds much stronger than what happened to Steve; he only developed the dystonia, not the other symptoms. And the Cogentin remedied that problem quickly. However, your wife is about 10 years younger than Steve, and I was told the dystonia side effect happens with younger people, so that may be the reason hers is more pronounced.
I think you need to speak with the Lakeside doctors face-to-face. I read on the other thread that the hospital wants to do a spinal tap to rule out a meningitis. Do they think the meds caused the meningitis? Or could it simply be a reaction to all the new meds plus a fever from an unrelated cause?
If it was me, I'd pack and bag and get a hotel room somewhere close by so you can pop in every day and talk to the docs. Because of these complications and the involvement of her family, I'd want to be proactive and keep tabs on what's going on myself.
Marilynin, she looked like she was improving on Tuesday. I didn't see her yesterday so her brother probably reacted when they saw her neck was bent back and bulging and she couldn't eat or talk. However, the ER did all the tests including the lumbar puncture and NOTHING. However she has a fever and was dehydrated. So, a fever indicates something is wrong so maybe it's a good thing that she was at the hospital. They said she'll be there 1-2 days. I asked (really told) them that I wanted her back at Lakeside when this is done. So, did Lakeside miss that she was ill with a fever, did they miss that the side effects were getting worse or maybe her brother reacted too soon (without my permission). I'm having trouble getting to speak to a Memory Center/Lakeside Unit doctor so far this morning (except for the emergency room doctor). I'm waiting to discuss this. And, I am very upset. I want them to hold a bed for her so that they can continue working on her medications.
fever and dehydrated could be signs she was having urinary tract infection while at lakeside. or went in with one. this can bring them to their knees once fever sets in even without fever. her kidneys may be involved and why shes reacting so badly. but they will treat her if thats the case with antibiotics and she will come out of that stupor fairly well if they get the right antibiotics. but thats just a guess, it could be something else but if shes dehydrated thats a good guess. if it were me i'd let her stay in hospital til they resolve this immediate fever/dehydration. just giving her iv with fluids will bring her round alot. the electrolytes are sooooo important to their mental status. like marilyn says i would have a bag ready to go and sit and powwow every day with the drs. its incredible not to be able to get in touch with someone when needed. i would also have her dr at lakeside in contact with the ER dr who admitted her to make sure they are on the same page with her other medications. its never a good idea to have 2 drs working independently when they both prescrribe different meds. i guess the lumbar was necessary to rule that out. its best to know she doesnt have meningitis! that would be another nightmare. please let us know how you are fairing. i know these drs know what they are doing hopefully, but if my DH had these symtoms from a med i would be insisting we try something else. maybe suggest the seroquel that many have good results with and less side effects/ i hope you get your answers asap. and ps when you visit ASK about her fluid intake/output now since shes having hydration issues. she obviously isnt getting enough fluids.imho they should have caught any rise in temperature asap if they are monitoring vitals as they should.
Thankfully, my husband hasn't been hospitalized since the dementia dx (other than in the geripsych unit). If you can't stay with your wife while she's in the regular hospital, could you hire an aide to stay with her and report to you what is going on, put you on the phone with the attending physician when they come in, etc.? My concern would be that regular hospital units are not set up to deal with dementia patients. I know that Steve would be all over that floor in a flash if he was hospitalized!
The reason I suggested 9 a.m. visits to Lakeside is that is the time of day the neuropsychiatrists visit. Yes, it will be hard to get them on the phone at other times of day. There is an attending physician and a NP on duty at all times, but it is the neuros that really direct the care. And I found that I really needed to be on top of new issues, etc., because the focus is on med adjustment more than anything else. Even in Lakeside, my opinion is that you need to be there frequently as your wife's advocate. We all need to take a page out of Nikki's book when our LO's are in any kind of facility. Sad to say, it's usually not smooth sailing.
P. S. Don't forget there are several social workers assigned to the Lakeside Unit and you can use them as a liaison if you can't reach the docs.
I've always felt that anyone you love should have an advocate with them in a hospital at all times. I didn't feel strongly that way about Lakeside. And Marilyn, you were right about needing someone to be there to check on her "cleanliness" and personal hygiene. I spent the day by her side in the hospital today. It was heartbreaking. She was mostly sleeping however, she was shaking and jerking spasmotically the entire time. That was frightening to see. They had her hands in big "gloves" so that she wouldn't pull out the tubes. When she opened her eyes, I don't know if she even knew I was there. She tried speaking and it couldn't be understood. I felt her neck and the lymph nodes or glands or whatever were swollen and hard. Her head was back and she was breathing out of her mouth only with a gargling sound. I was so tired from talking to the ER in the middle of the night a few times that I dozed off sitting in a chair. They were giving her antibiotics last night "just in case" but all the tests were negative. No meningitis, no UTI but they're waiting for other results. The fever was gone also. They took her off all medication, everything to see what happens. I felt very confident in them when the team of residents visited to examine her and get information from me. They each introduced themselves and said they will be around to check on her. And, one of the nurses sat down and talked with me for a long time. I'll get up early tomorrow and be there at the crack of dawn. I think I will be very happy to have her back to pacing and verbalizing although not happy to see the agression and combativeness return.
After a few days I'm hoping she will be back to her old "Alzheimer's" self and we can go back to Lakeside and start over. Keep posting your thoughts and suggestions, they are really helpful and encouraging. Nikki and Divvi, I appreciate your input and am grateful you are here.
I forgot to mention that she is in the NNCR which is for neurological problems and her neurologist is one of the physicians that will be checking on her. I bet he's mumbling to himself....that's why I don't prescribe these drugs.
well the good news for me, would be they have her off all meds. start over from scratch is a how it has to happen. if one drug isnt tolerated this will have to happen each time maybe. i dont know. i know marilyn went thru hell and back to finally get her steve with a cocktail that made him Happy and compliant! it takes time, it may be a while til they hit on the right combo but if it were me, if she shows such dramatic side effects i would say no , not working, try something else til once clicks. i know thats not how alot of drs work but you have to make sure she gets what she needs to calm her down but also not put her into a stupor and non responsive as she is now. these meds have a black box for a reason. somethings they go very wrong in the right people. othertimes another blackboxed will be the right one. its a hit/miss as we well know. i am sure you are worn out, and need some rest. sleeping in a chair is never good esp at a hospital. maybe they can give you a rollway in her room? those gloves are actually good so she doesnt pull out caths and tubes. i felt sorry for my DH when they restrained his hands when he was in hospital for uti. i convinced the nurse to take them off and i feel asleep and when i woke up he pulled out all the iv's and a bag of 600dol worth of antibiotics was drained onto the bed! so yes restraints are best with these guys. its to keep them safe. it breaks our hearts to see them immobile but we know we have to bite the bullet sometimes. i sure hope the antibiotics get her in a better place. sometimes the uti doesnt show cultures til several days. but hopefully its not that either. hoping shes better soon, and back to lakeside to reboot the process. dont lose the faith. it will work out eventually! divvi
The poor dear, and you too have my sympathies. It is so difficult to see our loved ones hurting in any way. Have they given you any idea what could be causing her neck and lymph nodes to be so swollen and hard? Could that be a medicine side effect, or are they worried about something else? I fortunately did not have to go through the ordeal you and Marilyn have. We tried Seroquel (at my insistence) and it worked wonders for Lynn. He never had any side effects. In fact the Nemenda caused more trouble with side effects. He has never needed any other medications and his aggression was severe.
Is there a reason they are trying so many different drugs? Correct me if I am wrong, but didn't the previous medication also cause her neck to slump and go to the side? I would be doing some research to see if there are medications where this isn't a possible side effect.
Advocacy is a very tiring job. Don't get me wrong, I love Lynn and would do anything for him, but I just should not have to fight SO HARD to get him the quality care he needs and deserves. I trust the staff at the nursing home or Lynn wouldn't be there, but my trust only goes so far. I do feel the need to go in daily to ensure he is being treated and cared for the way I wish him to be. I have had to fire doctors, report nurses and aides, have called the Ombudsman and reported the facility to the state. And this is the best facility in our area! I DO try to be nice, I truly do, but do not make me bring up an issue twice. Once I address a concern I expect it to be taken care of.
As for the hospital, I felt the need to be there most of the day and often spent the night too. I am not sure about your hospital, but here they have doctors who do rounds and each day it is a different doctor. I didn't like that to say the least. Lynn couldn't speak at that time, and even if he could he certainly wouldn't have been able to articulate what was wrong and how he was feeling. Our Neurologist does not have privileges at our local hospital, but he did have daily contact by phone. That brought me some peace. Glad to hear she will have her regular Neurologist checking in on her.
I keep thinking about how your DW neck was so bad, didn't Lakeside notice this? I just can't fathom how that would be an acceptable side effect, nor one that was that severe not being caught by the staff.
Have they tried Seroquel? I know it doesn’t work for everyone, but it does seem that the majority of us who have tried it have had success with minimal side effects. Perhaps you could talk to your Neuro and explain to him that you HAVE to try something and get his opinion, based on her previous side effects, about what medications would be best to try.
I am glad to hear the meningitis test was negative. How did she handle the spinal tap? I hope you are able to get some much needed rest! ((hugs))
Diatron: My wife has survived several 3 +wk hospital stays. Advocacy includes making sure you speak with her case manager and the Head Floor nurse on every single shift. Everyone has to made to understand who controls the medical directive and POA what your living will states etc. In addition to the copies on on the refrigerator, there is a copy in the glove compartment of the car, and a copy on a flash drive on my key chain. My wife too has wonderful brothers whom I love and respect, but they understand that I make all the decisions. I welcome their input but that's all, and they respect the final decision is mine alone to make.
I am unfortunate enough that this is my second go round as a care giver for an AD afflicted loved one. We cared for my wife's mother from the moderate phase through her passing.
Pre Admittance to a major teaching medical center, I repeatedly warned my the case worker that my wife was a wanderer. When she was placed on the floor I informed every one at the nurses station that no matter how grave her condition was, my wife would attempt to get out of bed and wander. I was assured that she would be placed in a bed that was constantly video monitored and had pressure sensors to alert the staff should she get out of the bed. The only problem there wasn't a monitored bed available. Needless to say that first night, I wasn't there, I didn't know she wasn't in a monitored bed. I had trusted in what I was told and she got out of bed unassisted made it to the bathroom where she fell in a tangle of IV tubing struck her head on the bathroom sink and incurred a concussion. A “minder” was then provided and paid for by Medicare.
Like Nikki, I felt the need to be at the hospital 24x7, (We're not at the NH stage yet). My wife was unable to communicate with the never ending stream of Md's, residents, interns, nurses and nursing students. She was in a state of mortal terror and confusion due to being constantly probed and poked at by strangers who treated her as if she were an inanimate object who was little more than an illustration in their text book. I have never encountered so many, so busy and preoccupied that they failed to comprehend that a little compassion, humanity and understanding would eliminated 90% her anxiety. By staying with her nearly 24x7 the need for excessive sedition and the resulting potential for pneumonia and other side effects were minimized.
I'm glad the meningitis was negative and hope the situation resolves back to just Alzheimer's rapidly I hope my sharing my experiences was of some help to you and other's whose loved one's face hospitalization at some point in the future
Nikki--I may be wrong, but I think Diatron said they had tried Seroquel for his wife and it either wasn't effective or there were side effects, or both. I was told Seroquel was the go-to anti psychotic for dementia patient because it's the safest. If there are problems, they go to the next safest choice. It sounds to me like his wife's reaction to the Zyprexa was the same as Steve's and was due to their young (relatively speaking) ages with AD. There's something about the way the body processes the anti psychotics that causes the dystonia condition in younger people. Before Steve, the other patient his neuro had seen this side effect in was an 18-year old schizophrenic. The docs found it quite interesting when they saw Steve bent over because they had rarely seen it before--of course, most patients with AD are at least 10-20 years older. Fortunately, Steve didn't seem to notice and wasn't in pain from the condition.
The above post by Nelsons is excellent in describing the problems that can occur when a person suffering from dementia is hospitalized. Unfortunately, if a family member can't be present 24/7 it is probably best to hire an aide to be there as an advocate. It is absolutely unconsionable that a hospital would subject a dementia patients to lots of extra personnel as a teaching tool. I realize that students need to learn, but from what Nelsons described, it sounds like they only worsened an already bad situation.
I've been at the hospital all day but I'm not staying all night. I'll get up again very early and get back there. I tried Seroquel at home but didn't get past the 25 mg. dose for the few days before she was out of control and went to Lakeside. She is young, 58 and I've never seen anything like it. She wasn't in pain from it but she couldn't eat, breath well or walk. She was making gurgling sounds in her throat. I'm the one in pain and scared. She's been sleeping most of the day but her neck still looks swollen and hard. And, the involuntary movements, the jerking and spasms and shaking are still there. I'm worried they'll be permanent. She hasn't been able to sleep for over a week and now she's not really waking up and when she does the jerking is worse and she can't be understood. I don't know what they gave her that night with her brother, but they're not giving her anything now. I spoke to the Social Worker from Lakeside and she said that the fever could have been caused by the medications. Of course they've been monitoring her vitals and checking on her all day but not much change. I was hoping the drugs would wear off quickly so I could have her back combative and a danger to herself and others before we tried again.
My heart goes out to you Diatron. That is a pretty severe reaction your poor wife had, I do hope the effects wear off and she will be back to her old self again. Just curious why Lakeside didn't continue with the Seroquel, did they give you a reason? I know it can take several weeks for the effects to show.
I think it is good that you are going home to rest. I would make it clear to everyone that you are "in charge". I carry my POA and his DNR with me everywhere I go. I know with Lloyd any sedatives would cause jerking and spasms. Stopping sleeping pills and seizure meds helped for a long time, but he is back to violent jerking and and spasms in the morning when he first wakes up. My guess is that it takes a while for his brain to engage in the morning. I wonder if the jerking could have thrown something out of place in her neck. I hope they have checked that. Hang in there!