My Dad has been diagnosed with having delirium after a stroke. He is continuously restless and agitated, he is always pulling at the bedclothes or taking off his own clothes. Is there any treatment for delirium and is it reversible?
My dad also did this. The doctors said it was a normal effect of the stroke. They called it "picking". My dad would pick at the air. It was like he saw something in the air and would try to grab it. He would also pull the sheets and his clothes off. He even would try to pull out the catheter. What was sad was that he got so bad they had to put his good hand in a restraint so that he would quit pulling at everything. It seems like I only remember it lasting a couple of weeks.
Dad is doing exactly what both your loved ones did. He is "picking" at the air also and will pull the catheter out of his hand/leg etc. He pulls the sheets off his bed and is always removing his clothes. Although he can walk with assistance he cannot look after himself, he cannot feed himself or go to the bathroom. I'm praying that this will subside. Did both your loved ones recover their mental faculties???
Yes, my dad recover some of his mental capacities. He still cannot walk much, and his short term memory is pretty bad, but other than that he is pretty good. One thing is they had my dad on dilantin from the time of his stroke until just this past month. While he was on this, he would do weird things like wanting to go home whenever he was already home. Every day he seams to get a little better. It is a long hard road, and we have been through many ups and downs, but hopefully he will continue to get better.
Well, my husband has made a remarkable recovery. The delirium has subsided. He wasn't able to go to the bathroom on his own but now the incontinence is gone. I'd say that took about 5 weeks to recover. My husband can walk unassisted but I feel better if he would at least use a cane. It took him about 6 weeks for him to start walking again. While in the neuroscience ward my husband tried to get out of bed and he fell. This was at 4 in the morning and the hospital called me to let me know what happened. They did a CT scan which showed he was ok, but, my husband thought that he had fallen through a wall (which was his head going through the CT scan opening).
Also, when I was able to bring him home he kept thinking I was some strange man and that he was in someone elses house. He also thought the hospital was someones house I just dropped him off at. His mental state was shot! Now, he's greatly improved. He realizes that his thinking was off. He no longer thinks I'm someone else and he knows where he is now. It has been 7 months since his stroke and he is doing wonderful.
I'm sure your dads mental capacity will come back to him. How long has it been since the stroke? Keep us posted and thanks for sharing.
It's wonderful that your husband made such a good recovery. I'm sure he's getting stronger every day. Dad had his stroke 15 days ago. He has improved in some ways since it happened, he's eating, can be fairly alert and responsive and can walk short distances when assisted. He's still very restless and is always pulling at the bedclothes, the bed or pulling his clothes off. He's not yet able to use the toilet. At times I believe he recognises us. They are treating his delirium (with what I'm not sure but will find out) so hopefully it will subside soon.
Thanks for sharing your experience. It is a great consolation to know that someone else has been though it and came out the other side ok!
Just to update, Dad is still quite restless, he is eating which great but cannot yet use the toilet.At times he seems to recognise us and sometimes responds when asked a question though it is difficult to understand what he is saying. We're praying the next week will bring noticeable improvement.
Another update. Dad seems much improved, he's holding and reading the newspaper and does seem alert. We've brought family photos into him and he seems transfixed by them. He's eating well but is very grumpy and frustrated. His memory seems to be coming back in spots but his speech is still very slurred. However he is engaging more with those around him
HURRAY! Congrats on your dads improvement! You have much to look forward to because it's so early in recovery for your dad and he is already doing better. Once he gets into rehab you should see even more improvements. Thanks fo the updates and, please, keep them coming.
Still very slow going here, little or no noticeable improvement this week, he's very sleepy and will doze off into a deep sleep in a matter of minutes. He's still incontinent and his speech is still slurred. He babbles on incoherently and points to his right alot. He isn't receptive to therapy and rarely interacts with those around him. It's hard, we're trying to be patient but we're praying for a glimmer of recognition to give us renewed hope.
Latest update. He's quite alert at the moment, still won't interact with us and cannot yet feed himself or go to the toilet. However he is walking around but is still in a state of confusion. It's been one month since the stroke.
Latest update: The doctors are happy with his motor function but he still has severe behavioural problems - removing his clothes, pulling at the bed and anything around him, trying to eat the newspaper, tissues etc ( this sounds funny but it's heartbreaking) They have him on haloperidol to ease the restlessness but it doesn't seem to be working.
I just don't know what to do other than pray, we really need a positive sign
Thank you so much for posting the progress of your dad. I look forward to seeing posts from you. The behavioural problems you mentioned doesn't sound funny one bit to me. My heart dropped when I read it. It doesn't sound funny because my husband had some issues like that, too. One day when he was eating, he tried to eat the design off the napkin. Another time he tried to drink milk without removing the lid first. That's only a couple of instances. It was heartbreaking to see this and I kept wondering how I could take care of him when he got him. Thank God that subsided as his brain healed.
It's barely been a month since your dads stroke. It took my husband nearly two months for the delirium to go away. Keep the faith. Your prayers will be heard.
God be with you and your family.
Thank you so much for your kind words. God Bless you and your family also I take comfort, strength and courage from them. I will keep updating the progress however slow. Hopefully we'll have a breakthrough soon.
Latest update: still very agititated at times. The "picking" seems to have ceased but he is continuously grabbing and pulling at what ever he can reach. He's on haloperidol at the moment but it doesn't seem to be that effective. What was your husband treated with for the delirium? His speech seems to be improving but we can't understand what he is saying as he's speaking to fast. However sometimes the occasional sentance can be understood..
They put my dad on risperadal.. And it really helped with the agitation... He is still on it, and it is still helping. My dad was also on dilantin. Once we took him off the dilantin (18 months post stroke) his mental state also improved. His short term memory is still not good and he still thinks he walk and do all the things he used to do, but he no longer gets mad and he no longer asks to go home when he is already home. This stroke has been very dificult on all of us.. We just hope and pray that he will continue to improve over time.
Actually, my husband wasn't given anything for the delirium. It would subside after about a half hour and then he would be ok. Seems like it gradually went away.
You mentioned that your dad was speaking too fast. My husband did that, also. It was almost like his brain was on fast forward. He did that a couple of times. Now, he talks a little faster than pre-stroke but it's not that noticeable. I think it just has to do with the recovery process. Some things you've mentioned I'm sure will go away.
Thanks , he's starting to interact with us some more but I think he's depressed about his situation, he rarely smiles which is not like him. We need to up the therapy and stimulation levels and get him more active.
Yep, millertime78...the depression does come. Doctors can prescribe medicines for that. Every now and then my husband gets depressed but it's not as much as before. Once your dad comes to terms with what has happened to him the depression will ease up. It may get worse before it gets better. Just keep reassuring him. Try not to feed into his depression. Get the most intense therapy you can get for him. How long is he going to be in therapy? What other therapy does he have? Occupational, speech? God bless you and I hope your father improves greatly.
Eating and swallowing is fine, he's starting to feed himself, can lift a cup and drink tea/water etc
Mobility is good, no problem walking, climbing stairs, strength in arms and legs good.
Good hand eye coorindination - is able to catch a ball and throw it back.
Can dress himself sometimes, trousers, shoes, dressing gown - no problems there.
Alert for most of the day, is rarely in bed except at night time.
Still no speach or recognition
Agitation - pulling at bedclothes, his own clothes etc.
No awareness of space/ danger - will wander around
Cannot use the bathroom, needs 24 hr nursing care
Very defensive/agressive when restrained from walking where he wants to go
Very hard hard to communicate with.
In summary, physically he's quite good but mentally he's very limited. The OT and Speech/Language says he needs a private room free from all distraction if they're to make a breakthrough with the therapy. Thats the priority at the moment. The doctors are treating him with seroquel for the agitation and behaviour problems.
Wow!!! That's great improvement, physically! Congrats! It's still VERY early in the healing process. Just watch and see how much of the negatives go away. The brain is very resilient. I read a post on here about a book called "The Brain That Changes Itself". It's about true stories of people that have had brain injuires and how the brain healed itself so the people can lead better lives. I ordered my copy off Ebay and can't wait to begin to read it. That may help you understand the mental part better.
Your dad most likely will overcome most of the negative issues. Thanks for the update.
To all, actually.
Wow! What a relief to read that so many other stroke victims have exactly the same symptoms as my 93-year-old mother since her stroke almost 4 weeks ago. Glad to hear that these phenomena seem to diminish with time. She takes Dilantin to prevent seizures, Resperadol (sp?), and at night, if needed, another sedative for these issues. A bladder infection and then a rash from the antibiotic also added to her considerable discomfort and agitation.
I am actually elated hearing about your fathers improvements. The toilet thing made me do a silent and invisible "high five" to you. This is so fantastic. Of course, there is more to come...thanks so much for posting the improvements.
My husband still gets disoriented at times, but not much. It's mostly after he has awaken from a nap. I contribute it to his brain taking in information of what's going on around him as he sleeps. Seems to happen a couple of times a month, if that.
He's now 10 weeks in hospital. Its still slow going and at times it feels like 1 step forward and 10 backwards. He is still very hard to communicate with and the therapists say they can't make much headway as a result. This is very disappointing as it appears they've given up on him. I really don't know what to do now, I'm wondering if I bring him home will he improve more? However practically speaking that will be very hard to do as he needs 24 hr care.
My Dad left hospital this week which is a relief as they were doing nothing for him. We've moved him to a nursing home until we get set up to bring him home for good. He seems more satisfied since he left hospital, hopefully the change in environment will help him communicate. They nursing home staff are great and they give him freedom to wander around unlike in the hospital.
Communication is still the biggest problem followed by incontinence. Sometimes he goes to the toilet on his own and sometimes he doesn't.
I've looked up Neuroaid on the internet. I'm thinking it might be worth a shot for 3 months. Anyone have any opinions?
Thanks for the latest on your dad. It's good to see how well he's doing. I would still give the incontinence a little more time to subside. It does take a while. I think the freedom your dad has at the nursing home will bring him more and more back to himself.
It's good you're satisified with the hospital and as long as your dad is, too, the more he'll work toward getting better.
Thanks again for the update and I'll look forward to hearing from you again.
We've decided to bring Dad home. I'm taking a few weeks off work to get him settled at home. It broke my heart to see him in the nursing home sitting on his own all day. 5 days in and so far so good. He's sleeping great, starting to communicate more, eating well & seems much more satisfied (at times). The biggest problems is the incontinence but hopefully that will cease over time. He is extremely defensive when we try to dress him,
Overall we're happy to have brought him home, the change of environment has had a positive effect. I'm checking out the complementatary chinese medicine as I've lost faith in coventional drugs.
My mom can talk now and she pulled her own trach out three times and finally they had to leave it. She can't walk because her left side is still paralyzed. She can pivot with two people helping her to get into bed. Right now they are saying at 50 she has to go to a nursing home. Did your husband go to a nursing home?
No, my husband didn't go to a nursing home. He spent 4 weeks in the hospital and 3 weeks in a rehab center. When I brought him home he was able to do almost everything himself. He had left side hemiparesis but that's all gone now. He does have a little spasticity in his left arm. His main deficit is his vision. He has double vision and that stops him from being able to do a lot more around the house. He walks great, no problem with talking, but has very mild short term memory...mostly forgetting to take his meds or forgets what day it is. He will be 57 and, honestly, he has healed up exceptionally well even though the doctors didn't think he'd make it.
He's getting on great at home, wants to be outside in the garden doing something, the incontinence is improving and he's starting to use the toilet on his own. The agitation has completely stopped. It was a great decision to bring him home, he's adapted great to home life. He's still irritable & cranky in the morning when he's being washed and dressed. Slowly but surely he's improving
Thank goodness!! I'm glad your dad is improving. I've been waiting to hear about the incontinence because I was sure that would improve. It is still VERY, VERY early in his recovery and he'll keep improving. He may be cranky at being washed and dressed because he feels he should be able to do it himself. He's, most likely, upset over the loss of independence.
By the way, I took my husband out of the rehab facility a week early because of the same thing you said. I didn't like seeing my husband sitting somewhere in a corner like an old feeble 90 year old man (again, he's only 56). I felt he was neglected and I, nor he, couldn't take it any more.
So, congrats on your dady and I'll be looking forward to hearing more about his progress!
Dad is home now for 4 weeks & he's doing ok. He's much happier & contented. We've established that he can read so hopefully the speech therapy can now commence. The incontinence is improving which is a relief. He's sleeping well & eating well. Speech is gradually becoming more clear.
Hello, again, millertime78! It's wonderful to hear your father is improving. Just a few questions, though...how is his swallowing? Was that effected? What about eyesight? Is the delirium totally gone? You mentioned the dilantin made him do crazy things. Is he still on it? Does he recognize everyone now? My husband is on dilantin and I think that's what is causing his mild cognitive issues. How many milligrams does your dad take of the dilantin?
Just to answer your questions
Swallowing is excellent as is his appetite
Eyesight is good, he can read aloud no problem & he can count
He's not on dilantin, he was on seroquel/quetapine but he's been off it for a month and is much more alert & normal as a result
He still has cognitive issues, he'll put on clothes back to front or try to put on shoes when he still has shoes on etc
Speech is improving but communication is difficult. Very hard to get him to follow directions etc but we're managing.
The good news is that the incontinence is now almost gone which is a huge lift in terms of caregiving. He's going in the right direction so hopefully the communication will improve more
Not much change. He has mood swings when prevented from going outside etc and can get very upset(physically & verbally abusive) at times. Communication is so difficult. He just seems to do the opposite to what is asked sometimes which is awfully frustrating. Physically he's in good shape, he rambles endlessly when talking only some of which is clear. We cannot yet have a conversation with him as its all one way traffic. its hard to keep going sometimes
Thanks for the update, millertime78. I know this is hard and frustrating seeing your dad like this. It's really uncanny how much he is like my husband. I'll tell my husband to do something or not to do something and he'll just do the opposite of what I say. When I ask why he'll say the usual "I don't know". Is your dad still in therapy? I'm sure the speech therapist can help him control his speech.
My heart goes out to you because I know you're doing all you can. I sure hope and pray things will get better for you and your family. Your dad still has more time to heal so that's a plus. Hope to see more posts from you in the future! God bless!
Delirium is the presenting feature in a few stroke patients, but can complicate the clinical course of acute stroke in up to 48% of cases. Old age, extensive motor impairment, previous cognitive decline, metabolic and infectious complications, and sleep apnoea are all predisposing conditions for delirium. Patients with delirium have longer hospitalizations and a poorer prognosis, and are at increased risk of developing dementia. The identification of the patients at risk and non-pharmacological preventative interventions are the key measures in the management of delirium.
Delirium is defined as a transient, usually reversible, cause of cerebral dysfunction and manifests clinically with a wide range of neuropsychiatric abnormalities. The clinical hallmarks are decreased attention span and a waxing and waning type of confusion.
Changes in the environment include: Reorientation techniques or memory cues such as a calendar, clocks, and family photos may be helpful.
The environment should be stable, quiet, and well-lighted. Support from a familiar nurse and family should be encouraged.
Family members and staff should explain proceedings at every opportunity, reinforce orientation, and reassure the patient.
Medications to treat underlying cause will be prescribed by the attending doctor.
My dad also still has his delirium. It has been two years since his stroke and he still talks strange. My mom helps him get into the chair, and then five minutes later he says he can walk and that he doesn't need any help. As time as gone on, he as been sleeping more and more and actually becoming weaker. When he first came home he could walk with some help, now he can barely stand. We have continued to fight for more therapy, but as soon as he gets a little stronger, the ins. company says he has reached a plateau and they won't authorize more sessions. It is sad to see my dad this way. I wish he would continue to improve... Good luck with you dad, it is a long road.
Hi Pam, things are ok. I've just been very busy trying to juggle work etc. Dad is ok. Communication is still the big barrier. He's interacting much more now with us, he'll play football in the back garden & even help cut the grass. However verbal communication is still a big problem. We try to treat him as normal as possible and he responds well to this. he hates being restricted but sometimes I have to bring him inside in case he''lll wander off. He loves reading subtitles off the tv & I am looking for speech & language therapy dvds to help him do this more. Overall he's doing ok, progress is slow but we must have patience.
It's been a month since you last posted. Just thought I'd drop by to check on your day. I really liked hearing he is progressing. Seems like he's coming back to himself. Hubby is still doing wonderful. He's happy that he's got his life back, basically. He can drive so he doesn't feel trapped inside the house all day.
my grandpa had a stroke this past sat. now no one is telling us anything. like what to expect is it a big stroke, what can we do to help, etc. I am weary because he is 92 and he is crying all day and night loud. he gets all frantic when we visit and he points to the door, he cannot speak, his right side is affected but he sometimes moves his leg. The hospital wants to discharge him already and send him to a long term facility. He has a tube down his nose for meds. a tube for food, he needs oxygen and he has those moments of loud crying, they gave him something that just placed him in a drowsy cant feel a thing stage...im worried is this all normal, well for a stroke victim??
Hi Pam, I've been extremely busy these past weeks so haven't had time to post. Dad is doing ok, he's at home & living semi independently. He needs somebody with him all the time in case he wanders off though he does seem to have a good sense of danger. Communication is still the big problem. Sometimes he responds , other times he just ignores us. Speech is very clear when he's reading aloud but when he talks its very jumbled. The speech therapist is struggling to get through to him as he doesn't realise there is a problem. He gets extremely frustrated when prevented from going outside but we have no choice esp at night. Its slow going and a struggle sometimes but overall he's improving. He is selfish and inconsiderate esp with my mom, always demanding something but this phase passes after a while. I'm delighted to hear how your husband is doing. You must be thrilled. Take care
Hi Lesreg, sorry to hear about your grandpa. I can only hope that the medical staff are making him as comfortable as possible. The doctors will do a swallow test to establish if its safe for your grandpa to eat by mouth. This would be a great help as it means the tubes would go. However it may take some time for the swallow reflex to return but don't give up hope. Its hard to hear him crying I'm sure, that kind of thing would break your heart but you must be strong and try to spend time as his beside reassuring him.
I will say a prayer for you, your family & grandpa.
I feel so hopeless today.I just read most of your posts and got some hope.I am so happy that your husband has improved so much, and I hope he will completely recover. I decided to ask you some questions and comment since I noticed you have good knowledge and very positive.
It is 2 weeks after my mom(61years old) Stroke and is still in hospital. She can talk, aware, able to swallow(not completely but getting better). Her left side has been paralyzed, not able to empty bladder yet, not able to sit yet. Today, her physiotherapist tried to bring her out her bed and sit on a chair, but it was a hell. I lost all my hope in a second. She is heavy and even with 3 people it was impossible to control her, I was afraid of arm or hip breaking. As soon as she improves to empty her bladder and gets rid of the urinary infection, we are going to take home. In my country, we don't have a rehab center, and I am not sure even what rehab center is and what people do in rehab center. We are trying to get some info, so we may able to do the same at home. Also, how long after stroke was your husband able to sit. I am wondering if your husband had the same problem in the beginning and how he improved. Also, we are not sure how we can help her to use a bathroom once she comes home, ...if you have any idea or suggestion please please help us out. Thanks in advance.
Dad is physically 100% and has regained some mental capacity. He has some communication but its difficult and he still gets frustrated. He's starting to get out into the community again -attending church on Sunday and going for walks on the road. Speech therapy is difficult as his attention span is v short but sometimes we can make sense of what he's saying. Its still slow going but we're making progress. The best therapy is spending time with him, engaging him in activities he enjoys and can do and keeping a routine.
They have a great computer program for speech therapy - I used it with my Mum who had severe disphasia. It made learning fun - and its aimed at adults! Check out their website - they are well worth it!
A long overdue update. My Dad is being cared for at home still. He has a reasonably good quality of life. He never recovered his speech and has only maybe 50% cognitive ability. Most of the time he's in good form, he reads books and papers but we can't tell how much is going through. He has vera very short attention span and is very restless often walking randomly around the house. Physically he's in good shape. Communication is very tough but we can understand each other now.My mother is the primary carer and she's with him more or less 24 hrs a day. Its tough but we're getting on with it. He was never receptive to speech & language therapy so we really made no progress in this area. Its clear that the stroke wreeked major damage on his brain causing him to lose all memory,basic life skills and affecting his behaviour. However we persevere with him as we love him so much.
Just got through reading your posts and updates about your father. My mother, age 83, suffered a stroke on Dec. 19, 2010. She had brain surgery to remove a blood clot on the right side of her brain. Her left side is affected. It is so heart breaking to see my mother. She had been living alone in her house, driving and very independent. She was transferred to a nursing home where she receives some physical therapy. She had her right knee replaced on Nov. 9, 2010 and I can't help but think this is all related, but she insisted on having the knee surgery. Plus she has a heart pacemaker. She has short term memory, however, she can talk and recall things from the past. She cannot walk and has to be helped with everything including all the toilet issues. I have 2 sisters and a brother. We all live in different areas and I ended up having a major disagreement with my sisters about my mother's aftercare and chosing her nursing home. I live in another state about 850 miles away. I stayed there for about 3 weeks and flew home 2 weeks ago. I talked to my mother twice on the phone since then and she was more or less out of it, but said that "this is hell". It was so upsetting. My older sister has power of attorney and she lives even further away. The only one in the area is my younger sister and she is not responsible and was "suppose" to be helping my mother after her knee surgery (my mother was paying her), but she was NOT checking in with my mother. To make a long story short, my older sister is not talking to me now because I told her that she dropped the ball when she agreed on this nursing home and then left the state BEFORE my mother was even released to the nursing home. I was appalled with the way they "dumped" my mother off there (another drama) with staples in her head and put her in a dirty room with only a bedspread on the bed. No one even came into the room until I made a scene. The older sister then flew back to see what was going on. I begged her to talk to me about certain things about our mother's care, her house (may have to be sold as the doctor is doubtful she can live alone), but she would not. I can only pray for my mother and her recovery. I know that this was her worse nightmare come true. I have not seen any posts from you on this site for over a year. How is your father doing? It was very insightful to read the history and progress of your father. What an emotional roller coaster for everyone.
So sorry to hear about your mother and all the drama with your sisters.
My father has recently had a stroke, and would agree, if he could express himself well enough, that yes, it is hell not being able to control your own life anymore, not being able to communicate like you used to, and not always understanding or comprehending things you once could.
I have appreciated reading the posts on here, and wish there were more updates! But I think that we can glean from what's here that it's important to keep trying, stay patient, and expect slow but gradual improvements.
We're grateful for even the slightest improvements over here!
My Dad had an ischemic brainstem stroke 5 weeks ago, he is 67. I am aware that a stroke in this area can be fatal as this area of the brain controls breathing etc. My Dad can breathe an cough on his own. He has not opened his eyes since the stroke (on occassions they open half way). He will answer commands on occassions by nodding but this tends to fluctuate. My Dad has lots of movements in his body, especially his left side, right side is improving. We were told in the first week 3 times he would not make it but he seems to be getting more fiesty every day and the physios say he is very strong.
Doctors cannot give us a prognosis.
Dad has a trachestomy which they are hoping to remove this week. He had a chest infection which has greatly improved and continues to improve as he is able to cough on his own which clears his chest. We just dont know what to think as although there has been small improvements since he was first admitted to hospital, the fact he has not opened his eyes and he fluctuates full conciousness we dont know what to think. He makes a lot of facila expressions and moves about as if he is having conversations in his head.
Does anyone have any experience with this?
These posts helped me to conferm the things my wife is going through after stroke. One new word I learnt is Delirium to describe the condition of my wife. I am now not worried about her physical fitness but her mental fitness. What is the relation between Dementia and Delirium? I some time feel my wife's condition may be out come of psychology rather than neurology. Or combination of two. Doctor is doing sort of experimentation by giving different medicines.Thank you millertime 78 for presenting very nicely for the benefit of all stroke survivers.
This is a follow up to my post of Jan. 30, 2011. My mother passed away on June 8, 2011 at the age of 84. She stayed in the original nursing facility for almost 3 months and they said that she had reached her maxium potential and Medicare ended and she went to "private pay". We found a private residential care home that provided a home atmosphere with very good care. Unfortunately, she kept developing fevers and infections and was hospitlized with aspirational pneumonia. We then found another assistant care nursing home that was good. She continued with physical therapy there. I last saw here there in April 2011.
However, she knew something was wrong with her brain. She had her good days and bad days. She found a new friend named Dixie who was 93 years old who was as sharp as a whip. They would talk together and laugh.
My mother developed "sun downers" and became agitated and depressed. Her doctor prescribed Seroquel (spelling?) which is an anti-depressant. She was also at risk for falling as she always wanted to get out of her wheel chair. They had to put an alarm on her.
She was eating dinner and laughing at the dinner table when she grabbed her head and said it hurt. They put her to bed and when they went back in to check in on her she had already passed away.
I think the last 6 months of her life were awful for her. She knew something was wrong and tried so hard to make it right in her brain, but couldn't. Her "new" friend Dixie passed away one week after my mother.
Unfortunately, the tension with my two sisters continue to this date. I have to find a way to deal with it or it will destroy me.
I miss my mother and I have to think that she is in a better place. She was a very strong force in our family and it is still hard to realize that she is gone. I appreciate finding this site and reading all the posts.
I know it's been a few years now since anyone has posted here, but the comments and recorded history here are very helpful. Janinaz, I hope you have found peace with your sisters. Take the higher road, don't always outwardly express what you feel in the moment (think about it first), and things may work out with time. Miller78, your historical account of your father's recovery is extremely valuable; I hope he is doing well.
My father had a stroke on July 1, 2014. He had a second and third stroke within the next month, and is now in a nursing home with 24-hour "sitters" because his agitation is uncontrollable. He is 82. He was a speech pathologist, and this is his worst nightmare come true. I recognize many of the issues everyone has brought up in this post; and I have come to realize that every stroke is so different. For example, my father drooled after the first stroke, and after the third stroke, it stopped. He was much like Miller78's father, except mine could not read or write. He had the same impulse control issues, ran away from home, and was very fit and strong when we brought him home after the first stroke. Even with 24-hour in-home care, we could not keep him contained, and he was easily frustrated. Now, 8 weeks after his last stroke, he is bedridden, incontinent, and very very agitated. He is medicated with Seroquel and several other medications. One of them is metropolol, which is a blood pressure drug, which has shown some effectiveness in reducing agitation in stroke patients. So far, though, nothing has worked very well. Dad is paralyzed on the right side, but has been able to reach over with his left hand and lift his leg to get his foot on the wheelchair peg. His speech is mostly unintelligible, but he responds to basic commands (such as "Please give the phone back to Emily"). Everyone who knows my father believes this is the saddest thing they've ever seen.
The most important thing for my dad, I believe, is to continue to give him hope and encouragement and to treat him as if he understands everything. There is a serious gap in our healthcare system in dealing with people with agitation where they would be restrained in a hospital setting (terrible) and on private pay, caregivers cost $400/day, plus $300/day for the nursing home. He cannot go to Board & Care facility because he is too disruptive, and he requires too much skilled care to take him home. There is no good option for his care ongoing, and that makes this situation even worse.
Don't give up on the person. No matter what their behavior at the time, they can improve. It takes a lot of love and attention. When my dad dies, and he will, I will know I did everything I could to make his quality of life as good as possible for whatever recovery was possible. The compassion expressed by people here in this community is what helps the most for your loved one suffering from stroke. For such a significant problem, there is not enough in-depth information for people to access to know how to help someone who has had a stroke, contrary to what the stroke organizations and other funded sources claim to offer. Sites like this really help a lot. Thank you, everyone!
StuckinAK:Concerned your father has been prescribed Seroquel. Please see here:http://www.abc.net.au/news/2013-11-27/growing-concerns-over-side-effects-of-seroquel/5120554 It is a drug for Schizophrenia which is being widely misused and prescribed to "manage" people with dementia and stroke patients, particularly those in instutionalised care. A family member with stroke was prescribed this (10mg) this year and it has been a disaster. Mirtazapene was also prescribed before this by a specialist to help him sleep and the dosage increased to 45mg. Again we informed by a physician who gave us a second opinion that Mirtazapene is not recommended for those who have strokes, because it can in fact increase risk of more strokes. After we brought him home, with the assistance of a psychiatrist, the seroquel was withdawn and he was monitored for two weeks. After this the psychiatrist instructed us to reduce Mitazapene to 30mg and after a couple of weeks 15mg which he is currently still on. We will be reporting back to the psychiatrist who will instruct us on the next step.
In our situation, it has taken a lot of patience, understanding and perseverance. In addition to withdrawal of these medications, we have been assisting him to walk with aids to improve mobility, weekly physio (again the physiotherapist should be experienced and knowledgeable about stroke patients-we have encountered many who completely ignored him because they said he couldn't take instructions - particularly when he was medicated with seroquel!) attempting to maintain a calm positive environment with music, and known people around without overcrowding him to make him feel secure. Fact is it isn't easy, and still is very challenging, but we are seeing improvements so we keep persisting. Self-care for carers is also very important. Exercise, good food, proper sleep is also important important for carers, not just the patient! Easier said than done...if there is no proper support for the carer/s.
Just wondering if you have had much luck finding the proper medications for your father's agitation. My father (age 69) suffered a stroke on January 11, 2015 and has been suffering from the same agitation symptoms described in you post and Miller78s post. Constant tossing and turning in his hospital bed, picking at his clothes and the bedding and calling out our names when we are not there. He is awake and agitated all night long. He was immediately put on Lexapro and Xanax, but developed severe leg tremors in addition to the restlessness and his sleep did not improve. They put him on Requip and Neurontin and we discontinued the Lexapro and Xanax. The tremors ceased, but the agitation continued. We're going to start up the Xanax again. It's so painful to watch his discomfort.
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