DH was hospitalized on June 30, he had a stone, very small 2mm which he could have been able to pass, however his right kidney was engoured and it showed fluid around it. He has surgery on Thursday, they scoped the kidney and could find any obstruction. The tube which connects the kidney to the bladder was swollen and red, but nothing else. As of today, 8 days later he is still in the hospital. He coming out from under the medication got violent, swinging punches at the doctors and nurses. He was placed in restraints. As of today he is still in restraints. The hospital tells me that he has to be out of restraints 24 hours before he can be moved to a care facility. They changed his meds this past Wednesday, trying to keep him calm, he tends to get aggitaged and combative in the evenings. Well today I got a call from the hospital, DH had a reaction to the new medication, I believe the wording was "he is very rigid". What the hell does that mean, stiff, how stiff etc. Doctor told me they are taking him off that medication (really??, I sure hope so) and they they were giving him some medication to make him sleep and relax, while this medication works it's way out of his system. It took me all of 9 minutes to get to the hospital, only to find DH asleep, hands were cold, but his trunk was warm. The doctor described him to me like this. He cannot hold up his head, it is leaning toward the right. Now 3 days ago, I went to visit him and immeitately called a nurse. I thought he had a small stroke. His head was leaning to the right, he could not hold it up, his right eyelid was practially closed, eye was totally bloodshot, yet the other one was fine. His lips on the right were slighly drooping. Now the nurse came in and had him hold his hands out in front of him, listened to his heart and proceeded to tell me he was fine, no stroke. Yet this doctor is now telling me it's the medication????He wasn't on this new medication when I experienced this same thing. Also Now tell me how do you think they are going to keep him calm and out of restraints for 24 hours? He's been getting up at nights for weeks now. I'm so worried, tired and just plain sick. I'm not sure they know what they are doing here.
Rae Ann, bless your heart. Sounds strokelike to me. The struggle to advocate for our loved ones is exhausting on top of everything else thats exhausting as well. Its enough to make anyone furious. I do know that this is the place to let it all out.
i would have the same reaction as you. if they did surgery only to come up empty handed and no stone it would be a red flag. they should have looked again for the stone the day of the surgery to make sure it was still there in my opinion which isnt much. the restraint rules of 24hr i do think is correct. no restraints for 24hr prior to be discharged. it would not be out of the ordinary that some of these meds or combos of them could produce a small stroke like scenario with AD patients. some of the noted black box warnings say its a very real possible side effect. the bloodshot eye is interesting because my DH has the same thing in the right eye and his bp has been fluctuation for 2 wks. the hospice dr thinks the eye blood vessel bleed could be bp stroke related and we put him back on both reg meds again but moved up the time to give them to later afternoon. if you arent pleased with these drs you could bring in another dr to consult with the dr and seeif they can better pinpoint his meds and the reactions. a neurologist who has knowledge of alz is one to find. they are more experienced in how these meds can affect them and which combo is best tolerated. if the dr is a urologist which would be one to remove a stone or a possible internist it may not be in your DH best interest to have them making decisions but better to bring in someone you know has experience. hope he and you get some relief soon. these meds adjustments can make for lots of worry while finding the right ones. goodluck. divvi
I don't like what I am hearing either. My uncle was doing ok and then one day, he spiked a fever of unknown origin..and when I went to see him he looked like your DH's description. My uncle was given tylenol for the fever..he did not recover and we never really knew what happened it was all very sudden. My mom also developed this leaning to the right..she had a pacemaker. So I am not sure what to make of this. I think the advice to get a neurologist involved is a good one. Also if your DH had not had a hx of heart problems it might be a good idea to have a cardiologist take a look. The urologist is not the person to make a dx about stroke or AD..
I understand your frustration..when my DH had heart surgery and then complications 3 months later and nearly died of it, when I went in after he was on the way up and saw a non sugar free 7 up on his tray..for a diabetic....I nearly went nuts. These people do not pay close enough attention and for what it is worth if they make a mistake anywhere along the like I personally think they won't own up to it.
By the way, one other things about the eye..can anyone relate any information about an eye seeming like it is more swollen or bulgey looking? There are days when I think my DH's right eyeball is larger than the left. What could this be about? He says his eye does not hurt nor his vision seem impaired.
I don't like what I am hearing either. My uncle was doing ok and then one day, he spiked a fever of unknown origin..and when I went to see him he looked like your DH's description. My uncle was given tylenol for the fever..he did not recover and we never really knew what happened it was all very sudden. My mom also developed this leaning to the right..she had a pacemaker. So I am not sure what to make of this. I think the advice to get a neurologist involved is a good one. Also if your DH had not had a hx of heart problems it might be a good idea to have a cardiologist take a look. The urologist is not the person to make a dx about stroke or AD..
I understand your frustration..when my DH had heart surgery and then complications 3 months later and nearly died of it, when I went in after he was on the way up and saw a non sugar free 7 up on his tray..for a diabetic....I nearly went nuts. These people do not pay close enough attention and for what it is worth if they make a mistake anywhere along the like I personally think they won't own up to it.
I don't like what I am hearing either. My uncle was doing ok and then one day, he spiked a fever of unknown origin..and when I went to see him he looked like your DH's description. My uncle was given tylenol for the fever..he did not recover and we never really knew what happened it was all very sudden. My mom also developed this leaning to the right..she had a pacemaker. So I am not sure what to make of this. I think the advice to get a neurologist involved is a good one. Also if your DH had not had a hx of heart problems it might be a good idea to have a cardiologist take a look. The urologist is not the person to make a dx about stroke or AD..
I understand your frustration..when my DH had heart surgery and then complications 3 months later and nearly died of it, when I went in after he was on the way up and saw a non sugar free 7 up on his tray..for a diabetic....I nearly went nuts. These people do not pay close enough attention and for what it is worth if they make a mistake anywhere along the like I personally think they won't own up to it.
The bulging eye could be caused from a blood clot in the eye. That is one cause. There is definitely something going on here that the current doctor has no handle on or seems really concerned. If he has a neurologist, I would definitely consult with him. If not, find one for a second opinion.
I know what you mean about medical personnel not paying attention. When my sister had her stroke I repeated constantly to not use her left arm for anything. She had breast cancer and all the lymph nodes were removed. BP is inaccurate and there is bad blood flow. She often wells a sleeve due to water retention in it. After I would tell then and they made note in her chart, they would still try to use it. Her last morning in the hospital after the stroke, her blood sugar was up to 120 so they said hospital policy is: no one can be discharged with a blood sugar higher than 110. She is not diabetic so do not know why. Anyway there was a big sign over her bed: do not use left arm yet this nurse gave her the insulin in the left arm. Two months later the insulin was still there - had only gone down about half. It took 6 months for the lump to go away.
Rae Ann you have right to be angry - their nonchalant attitude would make me angry too.
Carolyn, please know that as recently as this past Wednesday ..I was reminded by my Internist that blood sugar (glucose levels) over 100 are considered to be in the diabetic category. the number for years was 119.
mimi, if the eye looks swollen or bulging it may be a good thing to have it checked out first by his primary care physician. they can refer you to the appropriate dr for review if something looks amiss. like charlotte says could be hemotoma or clot starting behind the eye, or thyroid disease which has this as a side effect, or something simple like sinus infection. some meds may produce this as well as a side effect as well as infection. if it were me i would take him in and let the dr know just in case.
Ok as of today....no good news. DH had a belly band on to keep him in bed. Apparently that didn't work so well last night. He managed to get his legs over the bed bars and was attempting to get out of the bed. They put him back in, and placed "mittens" on him. Well that didn't work, he managed to get those off....so his hands are no restrained. When I saw him this morning, he looked terrible, I mean real bad. He has this on going twitching in the legs, arms, hands etc and then his body sort of jerks at different times. I brought this to the nurses attention and she said it had been going on her entire shift. I hope she put these in their notes, so the doctor will know about this. DH, does not know me and does not respond to my voice. I tried feeding him dinner tonight, no go, he ate maybe 20% of his food and then clenched his teeth. Would drink his milk or apple juice. He is on IV fluids. I'm getting real scared now. New medication was started today, however, the doctor does not think his distonia was the cause of the other medication, he says something else is going on. EEG is scheduled for Monday to see if he is having any seziers. What else can happen this weekend? I think I'm more tired now than when I had him home and was caring for him myself, if that is possible. He is totally Incontinent now. All of this in less than 10 days.
Rae Ann my Dh has this jerking during the night and has had it for months. Some nights it is really bad. He had an EEG and it showed that it was consistent with epilisy (SP). The neuro put him on lamotrigne 25 mg. 2 tablets every night at bedtime. But, this medication hasn't really helped much. He still has the jerking but not every night.
Rae Ann, I know several people whose spouse suffered these "little jerks" and were told it was myoclonus. There are some meds that can be given to help this condition. You might want to do a google search on it.
My hb does the jerking. He has started to have a different type too so I watched the other night. He looked like he was having trouble breathing cause his chest was doing weird things, but he is on a CPAP so know the breathing would keep going. I checked his pulse and it was steady - nothing unusual. It started with his chest, then arms ending with his legs jerking up together. It is weird, I have mentioned it to the neuro and she doesn't seem concerned unless they happen more often or when awake. It is weird and unnerving at first. But like much of this disease, you get 'use' to the symptoms.
I do hope you get a neurologist involved. When AD is involved you need someone on the team that knows the disease.
DH is positive for Myocolnus. He is scheduled to have a CAT scan sometime tonight and depending upon the outcome will determine if the EEG will also be done tonight or tomorrow as scheduled. In addition he has not eaten since yesterday, 5% breakfast today, no lunch and no dinner. He has only taken a few sips of water today. They have him on IV Fluids and pushed 500mg (I think that is right) within 1 hour and when I left the regular IV fluids were set up. I have a real bad feeling here. Will know more when the doctor calls. I'm so exhusted, I just want to sleep.
Rae Ann, Prayers going up for you and your DH. This is so stressful for you both. I hope you get some answers and some relief and that your DH will have a good response soon. Arms around..and we will await more news when you have the energy.
Myoclonus (pronounced /maɪˈɒklənəs/) is brief, involuntary twitching of a muscle or a group of muscles. It describes a medical sign and, generally, is not a diagnosis of a disease. The myoclonic twitches are usually caused by sudden muscle contractions; they also can result from brief lapses of contraction. Contractions are called positive myoclonus; relaxations are called negative myoclonus. The most common time for people to encounter them is while falling asleep (hypnic jerk), but myoclonic jerks are also a sign of a number of neurological disorders. Also when a spasm is caused by another person it is known as a "provoked spasm".
""Hiccups are also a kind of myoclonic jerk specifically affecting the diaphragm."" I didn't know hiccups are included.
Rae Ann, I am so sorry that you are having to deal with all of this. My experience is that a medical hospital really does not know how to deal with a patient that has AD. The rules (including the 24 hour no restraint one) don't always make sense for an AD patient. Figuring out what is a real problem and what is AD related makes the whole task that much more difficult. Add in the varying levels of a patient and that no AD patient is the same as another - well, you get the picture.
You know him best. You know what is normal for him at the stage he is at. You can also best describe his symptoms. What you have described does not sound right at all for him. I did find that my husband reacted (became violent) when workers went up to him and started just doing things to him without giving him time to process that they were going to do something to him. Approach makes a big difference to them especially in unfamiliar surroundings.
I continue this thread......mostly because it all started from here. It's been 21 days now since my husband entered the hospital for what should have been a very simple procedure. A week ago last Monday, I was told that there was basically nothing they could do for him. So the family decided to remove the IV Fluids, per his Health Care Directive. They are giving the medication Phenytion aka Dilaton for all the jerking (which goes on for 3-4 hours). Also he is getting Dalotted, which I understand to be in the family of Morphine and also Clenidine. Hope my spelling is corret. He is under "Comfort Care" now. I beleive him to be comatose at this point. He has not eaten or drank anything since the 13th and hasn't opened his eyes or even groaned in days. I am totally beside myself I have no idea what happened or what went wrong but this just doesn't seem right. I'm falling apart at the seams and can't think straight. Doctor tells me he though Rick would pass by this Sunday, Monday at the latest based on the fact he has not eaten or drank in days. Rick is still here. His lungs are clear, low grade fever, shallow breathing, and the heart rate just started to climb. The oxygen level a couple of days ago was between 78 and 82. Who knows what it is now. I don't know what is keeping Rick here. I've talked to him and told him it was alright to leave now, that I'd surive knowing he was in my heart. I think I've done more crying in the past week than I have in my life time. The waiting and wanting to be sure he is comfortable it just unbareable. Just seeing him immediately brings tears to my eyes and I start balling again.
Rae Ann, I too am sorry to hear things are not any better and sounding worse. I think you are owed some straight answers about what has happened. It may be that when your Dh had surgery, he had a reaction to the anesthesia. I have a friend who is a nurse and her husband also has AD..she worries endlessly when he has to have anything done even if it is just that twiight kind of stuff as all anesthesia carries risks. There has to be a way to get the answers you need for your peace of mind. You have done all you can for your DH so please don't assume guilt for anything that is beyond your control..I would pursue the doctors until you get the answers you need. Maybe one of the medical experts here can shed some light on what might be the source of his problems.Also could Hospice be of help to you? They may be able to answer some of your questions and concerns.
Rae Ann, i am so very sorry for you and DH. please ask about hospice to help him/you thru this difficult time. they will go to the hospital to keep him comfortable and can offer you comfort and info as well. this is what they do best. if it were me, i would get his hospital records and read what went on. they have to document what course of procedures and medications the prognosis they administed him since day one. then after you get those and if you think something was amiss you may consult with an atty to see if any type of medical negligence could be the cause for his demise/condition. at any rate you need to get the answers so you personally will know what happened. i know i would. while we are prepared for what end results are for our spouses its such a shock when things move quickly when least expected. let us know how you are when you can. divvi
Dear Rae Ann, I join with the others in sympathy and prayers for what has happened and agree that you are owed an explanation. I hold you in my thoughts and love.
I want to express an opinion that I hope doesn't offend you. I think looking for what went wrong and what happened is a probably not worthwhile at this time. Your situation is so sad and you and your DH are so young. You need to focus on the last few days with your DH and how to make it through the next days, weeks and month yourself.
Although you probably will never know if something was medically done wrong, I think it is very likely that you have just experienced the worst of this disease. We see what the disease of the brain cognitive does to our spouses but the brain controls all the functions of the body too. We get a glimpse of how it causes physical problems when the brain can not communicate with the body when they can no longer speak or smell or taste or even when the fall as your spouse does. We have no idea, and I think neither does the medical profession, what else Rick's brain could no longer do for him physically. I think it is possible what medically seemed like a simple procedure for Rick turned out not to be because his brain could not make the body react properly to respond to it (whether "it" is the procedure, the medications, etc you will never know).
I have read many stories here of very quick declines leading to death of spouses after what seemed like minor triggers or events. I truly think it is part of the disease in some people and not due to a medical error. I don't think it is something that can be predicted or prevented. Please please don't beat yourself up over any decisions you made in your quest to help Rick.
As other have said, please involve hospice in the final phase of Rick's journey and strive to find peace for yourself and him knowing you did all you could as his caregiver.
Anesthesia is unpredictable as to who will have a reaction. Add to that the unknown destruction that has been done to the brain, and who knows. Years ago a friend son-in-law went in for surgery on an in grown toenail. Back then they put them out and he had a reaction and died. This was a healthy 20 something, so just think how much more can go wrong with our spouses who have AD?
You will have time later to look into it, you can ask for an autopsy if wanted, donate his brain to research - things that might help in some way.
Rae Ann, I am so sorry for what you have been through and what your husband has been through. The doctors are learning more and more about Alzheimer's, and maybe they can find out if anything could have been done or if the Alzheimer's had already proceeded past the point of recovery prior to the surgery. We do know that some surgeries performed on Alzheimer's patients are the beginning of the end, but we don't know why. And it isn't the beginning of the end for all of them. There are too many unanswered questions.
I agree with what divvi said earlier. I hope that you will find the answers you need. My arms are around you, and our prayers for you and your husband abound.
I'm sorry for what you are going through. I feel as Divvi does. I would need to do all I could to find out what happened for myself. Only you can decide what's right for you. My arms are also around you.
And the story moves forward........Spoke with the doctor today, after hearing that there has been no change in my husbands condition for 2 days. DH was a very healthy, fit individual. Even at 56 he could out walk/hike any 20 year old. Guess he was part mountain goat.....all the hiking he did while bow hunting in the mountains. All the doctor could say is that it was up to DH now. His health is excellent and his will is strong. I didn't want him to have to stay in the hospital if there was the possibility of moving him. They contacted the Hospice House which is about 1/2 hour away from me and their nurse came down to evaluate him. He does qualify and Medi-care will pay 100%, there is a God! I will be going there tomorrow morning to take a look around and make my decision. The only other alternative I have is a skilled nursing facility, and I know from my mother and father's experience with nursing homes, I really don't want to take that route if I hae a better alternative. It is believed that it is possible that DH will last as long as another week. It really boggles my mind, he hasn't eaten or drank anything since a week ago last Monday. I want to make whatever time he has left as comfortable and peaceful as possible. Will let you all know tomorrow the outcome.
I had my father in a Hospice House for the last 27 days of his life when I could no longer physically manage him myself. There are not enough positive words to explain what a wonderful place it was. Peaceful, calm, and well staffed with all the right attitudes about comfort care only.
Rae Ann, I just found this thread today and am truly shocked and saddened at what has happened to Rick. Only you can decide if you want to get the medical records and pursue legal action, but for now, I agree that you should focus on making sure he is comfortable for his time left.