I thought I could handle all this... But, this past week is proving I can't. Oh I can handle the physical part, but the emotional part is at times too much.
Lynn had a "mild" stroke. I also found out at the hospital that his "cold" the VA doctor said was fine, was in fact pneumonia, and he has a raging UTI to boot.
I wonder why when you take an Alzheimer's patient to the ER .. that it is the caregiver who feels like they are going to have a heart attack! and they don't just automatically set up a bed for you beside them!
As we all know stress just exasperates their symptoms. My poor baby! He was so distraught, he kept trying to escape! He had no idea what they were trying to do to him with the Scans , EKG’s and x-rays. I had to stay in the rooms and hold him still. :( He cried, he screamed and said over and over and over... I just want to go home!! Enough to break this girl's heart.
Then tonight (he is home) he is having horrible horrible hallucinations. He has no idea where he is and KEEPS asking if he can go home. He sobbed asking for his mom... he had men chasing him that I had to convince him I battled and he was safe... one hallucination after the other, all disturbing. I called the hospital for help and advice, they offered to put him in the psyche ward.. I can't believe that would do anything but further upset him. He isn't harmful, he is just so damn sad and lost :(
I called my neuro, but could only talk with the one on call...and he thinks it is the combination of the UTI and the cypro. He was shocked they put him on it in fact -as in the elderly and with dementia it is known to cause hallucinations. Well then WHY did they give it to him? I am so mad right now. Is it any wonder, I am quickly losing faith with the medical profession?
The doctor suggested I give him an additional 50mg of seroquel to try to help him sleep. and ward of the hallucinations. If that didn't work enough, to give him another 25mg in a few hours....... that was 8 hours ago and he STILL isn't asleep! I am just at my wits end. Now I understand what Trisinger meant about the bull elephant! He should be down for the count but he just wont lay down. *sigh
I scarcely can think of anything to say to help, or give you strength and peace = except to tell you I will have you and Lynn in my thoughts and prayers. You have more going on in your life in just the past few days than most could ever handle. I am surprised also that Lynn was given Cipro, but also that he was sent home under the circumstances. If he was going to be sent home it would have been so much better if they order Z-pac for him. My Dad (also has AD) recently was ill and his doc knew to give him Z=pac. It's just once a day too.
I am sorry to hear of all the medical trials that continue to plague you.......especially this cancer scare. Please just know that you're in my prayers. You have been such an angel of support and kindness to so many here. Truly like a sister to us. Stay strong, and stay in contact with us. We'll be holding your hand right along.
Thank you Diana. Frankly just knowing I am not alone - that others understand just what I am experiencing helps. A great deal in fact. Just to be a bit clearer he has azithromycin for the pneumonia. It came in a 3 pack- one pill a day- and he took the last one tonight.
They did a urine test Thursday night, it had blood in it and they sent it to be cultured. They called yesterday and said he had to take cypro. I asked why the other antibiotic would clear up both problems, and they said due to the bacteria found he had to take the cypro too. The neurologist I spoke with tonight said there were many other drugs that would have been safer for him. GRRRR
I just can't believe he is still up! Or that on such a strong dose of seroquel he is still hallucinating. Poor thing. I have tried everything I can think of to ward off the fears they are causing..... Nothing has worked. The best I have been able to do hold his face in my hand, make eye contact and tell him I love him, I will always be with him and promise to keep him safe. It works for a couple of minutes. *sigh
I am calling my doctor first thing in the morning to see about changing his meds I don't want another night like this one! Ok, I think I will go try to convince him to curl up on the couch with me again. I am thankful I thought ahead and bought the door knob protectors. At least if I do accidentally fall asleep I know he can't get out!
This may sound odd for middle of the night, but I know sometimes a sponge bath really is soothing. My Mom did not have AD, but when she was quite ill and very anxious at night we tried this a couple times and she was soothed by the touch and the talking.
Nikki - As much as I am glad to hear from you I just can't imagine how you can cope with all of this. Hopefully Lynn has settled down by now, but I know from Hank that sometimes the meds make things worse. It just seems you need additional help - is there any for you? Now that New Realm has mentioned it - I remember putting those disposable wash cloths in the microwave and using them when I took care of my Mom and in the middle of the night it was soothing. So much love to you - I just can't imagine worrying about cancer for myself and having the extreme difficulty of Lynn also. Please let us know how things go.
Nikki, I am so sorry you are going through so much at this time. I will pray that Lynn will calm down and that your tests for cancer will be negative. Take care of Lynn and YOURSELF. Love and Prayers.
Very interesting, I remembered at some point in the night that my mom use to put warm clothes on my forehead. I figured why not try it? I am not sure if he liked it, but he didn't resist it. He was just so heartbreakingly sad... and somehow, he knew he was confused too. How odd.
The hallucinations went on all night. They got less dramatic, and caused him less fear. For that I am grateful. I have to laugh today, either from lack of sleep or from sheer exhaustion. But I keep hearing the doctor last night... he said they could put him in the psyche ward and drug him there, or I could keep him home and drug him here... IF I thought I could handle it. Well, hell isn't that just a wonderful choice of options?
I honestly don't know how I made it through the night. It was never ending.. relentless. I just wanted to have a tantrum of my own and scream out the injustice of it all. But, I couldn't... Lynn needed me. Though I wasn't sure I could do it... I did! More important I was able to keep him home. I just believe that was vital to him. Placing him somewhere strange could have only made him worse. I kept thinking about the ER trip, him being so sad and confused... trying to escape ... to the point they called in the security team.. YIKES! I don't think I could have handled that again either!
Diana, I am going to go research the Z-pac. I just called the hospital and they said he has e-coli in his urine and they are now culturing his blood as well. For this strain they said he needed to be treated with certain drugs. They want to switch him to Bactrim. I am going to research it before I give it to him!!!! I am also going to call the VA and my neuro to get 2nd and 3rd opinions. I know it was the Cypro that cause this reaction, as he was fine, even with the UTI until he had that medicine. I am still upset they gave it to him. When I researched it, it clearly said use as a last resort for dementia. GRRRRRRRR
I am so thankful for this forum!! I can't imagine how lost I myself would be feeling right now without it. Thank you all so much!!!! ((hugs))
Oh, Nikki, dear Nikki, - this is too much for one person to handle, especially with your own health problems. Can you call in any of his children for help? Can you call the Alzheimer's Association for advice on an agency that can send someone to give you some relief?
I'm going to get in touch with one of our physician members - Marsh, just in case he doesn't see this. He must have some recommendations as to what you can do about the emergency room doctor's "advice."
Sweet Nikki, I too hope there is someone you can call upon to come over and "visit" with him so that you can get some much needed rest! My prayers are with you while you await the results of the biopsy, and hopefully get the right dosages of the correct medications for him. Here is a special hug!!!
I was so happy to see your name and at the same time I am so sad to hear what you are going thru. DickS is right you are a Warrior Supreme! If it's true that what doesn't kill you makes you stronger, you will soon be Hercules. I'm glad you made it thru the night and am praying that tonight will be better for you both.
I hope you can get some rest today...will keep you at the top of my prayers.
I'm new but I want you to know my prayers are with you and Lynn. It broke my heart when I read what you and Lynn went through last night on top of your own issues.
I have trouble putting my feelings into words but some how I'm trying to relay to you that it's people like you that I look up to and admire and hope that I have the same strength and courage you have in this battle to protect the one you love when dealing with a bunch of clueless people when looking for compassionate help. WHEW!
Hope you get out of that what I'm trying to say. God Bless You!
Nikki, first off i am so sorry you are having all this stress. with Lynn and your own health issues. i k now firsthand how awful a trip to the ER can be with AD. i sometimes go 2/month at all hrs of the nite. UTI has taken up residence in our home it seems:) i have found for e-coli Bactrim was prescribed to DH as well. we have been on jus about every antibiotic available. some helped others did not kill the infection and it came back. its critical when you have esp blood in urine they do a culture to pinpoint the bacteria. Levaquin is a very good choice for a broad spectrum antibiotic, covers a miriad of bacterias but still some can be quite resistant- we have taken the levaquin alot plus, bactrim, macrobid/macrodantin/one of the best ones was Cefnidir, i think a cephalosporin type,,it worked really well too, -each is rx'd according to the cultures. believe me if they dont get the right one, the infection can come back asap. i will be thinking of you today, hope you get things under control, i do sympathize with you and what you are going thru. my best, divvi
Levaquin is amazing as a bacteriocide, BUT..... do look up, only for purpose of being forewarned, some dementia patients have gone totally whacko on it. If you read up on it you'll just have a heads up on signs it may not be optimal. If my loved one had to take levaquin I'd hope for it to be in hospital, by IV.
Thank you all so much!!! All of your comments have helped me so much today! Dick your comment made me smile, I think I have my battle cry down to a T *wink Welcome cynfany!! I will have to go check out your posts when things settle down here You did a wonderful job expressing yourself!
Divi thanks! I feel a bit better about giving Lynn the Bactrim now. Thank you Joan for trying to get a hold of Marsh for me. I too hope he sees this... the more opinions the better I will feel! Can you believe the ER doctor I spoke with, suggested I might want to "put up with" the hallucinations??? OMG! It has nothing to do with putting up with them. A "normal" hallucination I have handled. These were not normal and were causing him great distress!! All I KNOW for sure now, is Lynn is never having Cypro again.
My neurologist said there is always a risk with any new med. But that unlike Cypro, Bactrim does not have a history of causing hallucinations. He HAS to have medication, so I can only hope he does better on it. I just checked on him again about an hour ago.... he knows he is home and is much clearer headed. I imagine with the amount of seroquel he had in the last 24 hours he will sleep most of the day! Later today after I get his medication and finish up calls to doctors I too will get some rest.
As for help, my sis and her two children live with me. They were just wonderful with him! I thought he might frighten the kids, and tried to keep them in their rooms. But, that wasn't the case at all.... they wanted to help their uncle and make him feel safe. Getting all teary eyed just talking about it. They instinctively seemed to follow my lead and knew what to do.
DISTRACT him from his "bad thoughts" I also called his son and he convinced him he had taken care of the bad guys that I may have missed... I called his sister in CA to talk about the old times....pictures... I did anything and everything to distract the horrible stories that were playing over and over in his poor mind. When he started telling me about them yet again, Or sobbing for his mom etc etc I would interrupt him and try to change the subject. I'm not sure if that was right or wrong, I just wanted to console him. When he couldn't be diverted, I kept assuring him he was loved and safe.
I hope to never have another 24 hours like the last... but if there is, now I will be better prepared for it. I think! lol Again, just thank you all from the bottom of my heart! I will try to get on later tonight or tomorrow to update you. Thanks for being here!!!
I have to jump in here. I had a MAJOR TWO-YEAR reaction to Levaquin. It was prescrbed for a stubborn post surgery infection that would not clear up. I was on it for two weeks when I developed joint pain so serious that I could not get up from a chair. Every joint in my body was screaming in pain 24/7. It was only then did I read the insert that came with it, warning to stop taking it immediately if joint pain developed. The first week I was on it, I mentioned the joint pain to my doctor, but since he thought I had bone cancer anyway (very long, miserable story - I didn't have bone cancer), he just shook his head sadly. By the second week, I was in tears, and I think just to shut me up, he took me off of it. I did a lot of research, and found ONE doctor on the Internet - Dr. Jay Cohen - who had been warning about Levaquin and its derivitives for a long time. I wrote to him, and he told me that yes, joint pain was a serious side effect of Levaquin, and it could take anywhere from a few weeks to years for the pain to get better. It took TWO YEARS, before the pain subsided.
I have not looked up what New Realm suggested about Levaquin and dementia patients going whacko on it, but if they can't tell you what is wrong, they could be in PAIN.
I am NOT suggesting it affects everyone negatively - Sid has taken it with no side effects whatsoever. I am just warning that you should be on the look out for any serious effects from it.
Nikki, It is good to hear from you. You are an amazing person. Lynn is lucky to have you as a staunch advocate who loves him so much. You have so much on your plate. Do you have someone who you can lean on right now? I am praying that the results of your cancer tests will be promising.
Nikki, the love you have for your husband shows in your caretaking of your DH, it is wonderful to be able to go thru life with the love the you and your DH had for each other. You truly are an angel on earth, you have shown such love and concern for all of us that have gone through such rough times. When I read you notes to everyone your warmth touches me too and calms me down when I need so desperately to feel a hand on my shoulders also. I pray for your test results to come back ok, and that your DH has peace today and each day forward.
Nikki, sorry it has taken me so long to pick up this thread. DW and I were on a drive to see the surf from hurricane Kyle. There wasn't any.
Regarding the medications, etc. When you go to the ER you should be sure the doctor knows, up front, that your spouse has AD. When medications are suggested you are within your rights to ask about side effects, particularly for patients with dementia. It sounds like the order to take the Cipro came after they got the cultures back - at least a couple of days. At that point you could have called his regular doctor before starting the Cipro. Also, if he was doing OK, it wouldn't hurt to wait a day or so to get in touch with a doctor who is familiar with him and with AD, rather than the covering doctor. As Joang said, not all AD patients react the same to the drugs, but if there is a safer one that would work as well, that should be tried first. Also, Levoquin is in the same class of drugs as Cipro and has a very similar side effect profile. Another drug comment - Azithromycin and Z-pac are the same thing (generic name and brand name).
I hope this helps. You have certainly been through more than your share. If you have any further questions, please let me know. My e-mail address is in my profile.
Nikki, here's another wish and prayer that you will have no more nights that were so awful.
My DH has had some pretty bad nightmares. He gets so scared because he knows he is losing his mind. It's good to know about the calming effect of warm washcloths. We have a heated mattress pad on our bed. I turn it on about 15 minutes before we go to bed and the warmth seems to calm him when he crawls in.
We're praying for good results from your tests. Let us know the results. We've been missing your posts.
Nikki - what an awful night. It sounds like, in spite of everything that was going on, you managed it very well. I did find while he had some awareness that sometimes when he was scared, I could often ask him to hold me because I was scared about something and really needed him. From there, I would usually get him to sit on the couch with me and watch a movie or just listen to music. He had some really interesting hallucinations but I don't think that they were every medically induced.
I didn't see any suggestions on warm milk but drinking something warm may also help.
At this point, you are asking the right questions to not only avoid this type of thing in the future but different ways to handle it if it happens again.
Congratulations on sticking with him and making it through it. Hopefully the cancer tests come back negative.
Marsh, thank you so much for your reply. Here is the thing that still has me streaming a bit. When I got the call about him needing to take the Cypro ASAP, it was on a Saturday. I did make it very clear to the doctor who called and ordered the Cypro that Lynn had severe AD and also about his horrible reaction to the ER visit.
I also called the VA hotline to speak with a doctor on call. Apprised him of the situation, his test and results, gave him the meds he was on and asked many questions. One of which was is this drug the first choice for an AD patient and are there any adverse effects
AND I also asked the pharmacist if these drugs were safe for an AD patient if the combo was safe , etc etc
I know there are many many caring doctors out there. My neurologist I just love to pieces, he is truly like family to us. Unfortunately, I knew he was out of town.. so I relied on the ER doctor, the VA on call advice doctor and the pharmacist. I had little choice but to put my trust in them. I was told it was vital he start the meds immediately where he had e-coli in his urine and had a past blood infection (septic from untreated UTI -before AD)
I feel very let down. I will take my share of the blame as well. Having my own health issues and being overdosed by a doctor in the past, I KNOW to look up information .. knowledge is power after all. But, I am trying to go easy on myself, we had 3 days of hell... I had little to no sleep, and well I figured I should be able to trust 3 professionals after all. Lesson well learned, never again.
Thanks for sharing about the Levoquin being in the same class of drug as Cypro. I am having his charts all red flagged that he is not to be given this class of drug. There are so many other options out there, why give one known to cause Hallucinations? *sigh
therrja I made us both hot chocolate. Mine soothed me a bit more , hmm perhaps that had something to do with the shot of brandy I put in it? LOL
Dazed, can you tell me more about this heated mattress pad? I am thinking that would be a nice thing to have this winter! He often now speaks of how they use to put warm bricks in their beds at night. Last winter I tossed the blanket in the dryer before bed... but now he spends a great deal of time there and it doesn’t stay warm. If it had a timer I could monitor that could be ideal
Again, thank you all for your support and suggestions. You have made a bad day manageable. No word from my doctor today, but yes I will let you all know when I find out. Keeping you all in my thoughts and prayers~Nikki
Nikki You sound like a gal after my own heart, brandy in the hot chocolate. Sounds perfect to me. Maybe a shot in his would have helped? Hope all goes well with your tests. I am a 3 time survivor of breast cancer so don't despair. I am 6 years cancer free right now. Thinking and praying for you
Nikki, I bought the heated mattress pad after it worked so well with my Dad in his last years. He was always cold. I purchased it at Wal-Mart. I think it was $89.00 two years ago. It has probably gone up since then. It fits on the bed like a regular mattress pad. Ours is for a queen size bed and has dual controls. I don't heat my side. I'm always hot. There are several temperature settings. I keep his side set on No. 6. He thinks this is the best thing since sliced bread.
A legion of strength sent to you from us. You are amazing, and Lynn is so lucky to have you. You shall have a crown in heaven, I am sure of it. Right now, keep plugging away, and make sure and do something just for yourself. Like buy yourself a Lexxus. Well, maybe at least a cup of cocoa alone on the front porch.
Nikki, so sorry to hear about your ordeal. Hoping and praying things turn out o.k. for you. If Lynn came from somewhere they put bricks in their beds at night, I am guessing they also slept with down blankets. I was told there was no way you could ever be cold under one, so when I returned from Berlin, I brought mine with me. But right now, those heated mattress pads seem perhaps even better.
I'm curious. I once got scolded for putting a heating blanket under the fitted sheet (when I was a kid) because of the danger in case someone wet the bed.
So, I'm assuming since this is sold as a mattress pad that it is waterproof? And is it washable just in case there was an accident?
Well, Nikki--I'm lobbying for you to get the Lexus. You can always have a cuppa cocoa. :) Seriously, though, I'm so sorry for your troubles. Just wish I could say something really profound and make it all go away. You and your DH are in my prayers. Take good care of yourself!
Nikki=even though I am away from home visiting family my thoughts are with you, I don't know where you find the strength to do what you do. Go for the Lexus.
Well, with the economy going south I vote for an Avalon - just as nice as a Lexus without the Lexus price. Then you can have seat warmers when you aren't in bed! Nikki - you surely made it through the worst of all, I give you my vote as Caregiver of the Year (maybe even the century)
I would take ANY car about now, mine is feeling sickly. LOL
I just woke up! I can't believe it. I checked on him at 6 -gave him his meds and my sis said you look like death warmed over. Well gee thanks! So she told me to take a nap and she would keep an eye on Lynn if he got up. Amazing what some sleep can do for the spirit :)
So the phone woke me up, it was the hospital. Lynn's infection did NOT spread to his blood. Whew! He is doing much better today. Didn't even fight me over taking his meds. Makes me wonder just how bad I do look LOL As far as his medication, we stuck with the Bactrim. So far so good. He has only had 2 pills so far. It was his 3rd Cypro that made him hallucinate, so I am keeping my fingers crossed. The neuro I spoke with the other night said to up Lynn's dose of seroquel any time he has a UTI to help ward off future complications. So for now he is on 2 a day. Keeping my fingers crossed!
TheQueen, I am sorry you have been through so much. I am so happy to hear you are cancer free! But yes, you are right. I am not truly overly concerned. I am driving my family nuts with my calm. My twin is going particularly nuts. I keep telling her whatever will be... will be. Worry can not change it. I know I can face whatever comes. Like I reminded her, this isn't my first time. I have taken chemo before for a suspicious mass in my brain. I have had 3 brain surgeries for that and failed attempts to ease my pain from Trigeminal and Occipital neuralgias.
After that and caring for Lynn all these years, there is little that can scare me about my health. Now if it was one of the children, or someone else in my family, that would be different. My dad always said a serious illness is often harder on the family, than on the patient. I found that to be true in my case. With each impending surgery, I was calm. In fact I found myself soothing them! LOL
So, I am ok! I should hear from them later today or tomorrow at the latest. I thank you all for your support and encouragement((Hugs)) And will be sure to let you know when I find out. Time to wake Lynn up for lunch. But like a bad penny I'll be back LOL