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Old 04-13-2012, 11:40 AM   #1
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Unhappy Wanting Dad back

My dad had a series of mini strokes starting on March 20th (he refused to be admitted) and has now been hospitalized since April 6th as he ended up having a full blown stroke and carotid endarterectomy of the left artery in his neck (the right side is 100% blocked). Before having the surgery my dad was up talking, laughing, joking, eating, being himself besides some right sided weakness and lack of motor skills in his right hand. After having an angiography the day before the surgery my dad had another stroke which left him extremely confused and unable to put sentences together. The doctors told us that they weren't sure if he would come back. The day of the surgery, as if it were a miracle, he came back to his normal self just with some slight trouble finding words. Ever since his surgery (April 11) he hasn't been himself (this after coming out of it almost a vegetable, no movement or following of directions but he ended up moving and saying random words moments later). He doesn't know any of us (my mom, myself, or my brother), is very confused, extremely combative and aggressive, and isn't putting words together again. Today, two days after the surgery he's more peaceful, less combative, slightly (very slightly) less confused but still doesn't know anything. It's as if he's mentally retarded. He has a body that works but a mind that does not. The hospital thought that he may have been detoxing from alcohol so they treated him for that and said it could be a while before we know whether he's acting this way due to the detox or if this is how he is.

I just want my dad back. He's only 59 and I'm not ready to lose my dad. Sure, he's there but he's not my dad. I'm losing hope and hurting so badly. I miss him so much and can't understand how he can be fine before surgery and not after, especially since he did not stroke while in surgery and his brain waves never changed.

I'm sorry to ramble on, I just have no one to turn to. Has anyone ever experienced this with their loved ones or themselves? Is it possible for him to come back and remember us, know us and be able to be somewhat normal again? I know he'll never be the same but wish and hope and pray that he'll come out of this and at least know us.

 
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Old 04-13-2012, 12:45 PM   #2
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Re: Wanting Dad back

Hello Orangeblossom
I am so so sorry to hear about your dad and what you are all going through as a family. It is very scary having a loved one going through this. My heart goes out to you all.
I can only tell you what I know from my research and my experience and hope it helps. After a stroke your brain is swollen. This causes confusion and delays healing to some extent. How long it is swollen no one knows but when the brain takes a hit it takes time to heal. Do not give up hope. So many of us can relate to what your seeing with your dad but until the doctors figure out whats going on, they are guessing. Is he going for another MRI ? When I read your posts there seems to be so many unanswered questions with your dad. I am confused too. All I can tell you is demand good care and demand some answers. You and your family are your dads advocate. You need to speak on his behave.
Keep the room quiet and keep reasuring your dad that he is going to get well. Keep telling him he is healing and he will be well again.
Keeping you in my prayers
God Bless Mulchie

 
Old 04-13-2012, 02:06 PM   #3
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Re: Wanting Dad back

Thank you so much for your reply. I do not know if Dad is scheduled for another MRI. Right now they are trying to treat one thing at a time and that is his blood pressure. This all started off with his incredibly high blood pressure from not taking his medication. Unfortunately, this could have all been prevented. I'm sorry if there are many unanswered questions. Maybe I can help by filling in some missing details. The extent of Dad's TIAs was weakness of his right hand/arm, his right leg giving way at times and blurry vision. After the stroke, the symptoms all seemed the say except for that he was very confused at first and had a loss of words at times. This improved by the second day, the day before surgery. He's had, CTs, MRI/MRA, angiography, blood run, ultrasounds, EKGs and Echos all run. Everything came back normal besides the clogged carotid arteries and the left sided brain damage, from the full blown stroke.

As an update from this post, I can say that we've had a small improvement. Mom visited Dad today and he reached out to her, squeezed her hand, answered yes/no questions, formed one full sentence (all spoken very softly, unlike him), perked up when he heard about my brother and I, he recognized and knew who she was and was moving around. He tried his hardest to open his eyes but struggled, only opening them half way. The day before he was a mad man and could open his eyes all the way, with my mom calling them "crazy eyes" because of his looks and his actions. My mom asked the doctor whether he would improve and whether he knew why he wasn't opening his eyes he couldn't pin point an answer. He said that his body and brain are going through so much right now that he's struggling. He may be like this forever or he may improve, no one knows just yet. The doctor states that all sedatives and anesthesia are out of his body now. Am I wrong in thinking that since he was so alert (albeit, out of control) yesterday that he may end up being able to communicate and open his eyes sometime again? I don't like to get my hopes up, as we've done this often in the past week, so I try not to. I just find it odd that he was so wide eyed and active yesterday and that today he's finding it hard to open his eyes, even though he was trying. My mom did also say that he seemed very tired, which is understandable.

I know that no one knows the answer but any insight or suggestion is helpful. This has just such a shock and blow to us. I miss him so badly.

 
Old 04-14-2012, 08:44 AM   #4
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Re: Wanting Dad back

You are right about the strokes maybe they could have been prevented. Its so hard to know but what is important is what you do now. How is your dad doing? the tiredness is a common thread with stroke. When the brain is injured it is one of the common symptoms with everyone. I am hoping that with time over the next few days as the artery pumps free of blockages and the heart becomes better supplied with blood and oxygen you will all start to see improvement. Keep in touch and let us know how your dad and you are doing.
God Bless Mulchie

 
Old 04-14-2012, 01:26 PM   #5
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Re: Wanting Dad back

Today showed much progress in dad. He was using his words correctly, forming full sentences, opening his eyes fully and was alert most of the time. He did tire very easily and became confused when he was tired. We spent about 2.5 hours with him this morning and knew to leave once he started to tire. Before we left they did the swallow test and he is now allowed pureed foods and thickened liquids. We left him to rest for about 3 hours and after those 3 hours he seemed even more alert and less confused. He was even joking around and remembered that we had been there earlier in the day. While he is far from himself, he was so much better today.

My question here, as I do not like to get my hopes up (we've been on a roller coaster for a week) is if there can be a decline after progression? I know that if there were another stroke there would be a decline but is this improvement something that will keep or will it disappear?

Thank you so much for your replies!

 
Old 04-14-2012, 06:41 PM   #6
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Re: Wanting Dad back

Wonderful you dad is improving. That is what you hope for. The fact that he is coming around and improving in such a short time, I like to think that it is a good sign. Yes in recovery sometimes there is a two steps forward and one back. It just goes like that sometimes but over time recovery continues and improvements continue. Every stroke and Every person is different. I guess what I am saying is its very difficult to predict. However, we do know that he has gone from agresstion and not knowing anyone to recognising you remembering you were there, talking better now swallowing. All very good stuff this soon in recovery. I would celebrate.
The tiredness remember is common. And when it sets in it can cause speech problems and memory problems and other stroke symptoms to come back. But the further into recover you go the less the fatique becomes. However in saying that it might always be something he struggles with. I still have a nap in the afternoon. You were right to not tire him out. And your right after rest he was even more alert. That tells you that rest is good.
Continue to be positive and encouraging around your dad. How much he will recover we dont know. But we do know he is doing great and hopefully continue that way.
God Bless Mulchie
P.S. Tell your dad we are all pulling for him.

 
Old 04-15-2012, 06:07 PM   #7
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Re: Wanting Dad back

Well, the excitement we had about dad's improvements was short lasting. Today he was worse than ever. While he did know we were there, recognized us and tried his best to communicate there was nothing but random words with some sense added in, but minimal. According to the doctor all his vitals and blood tests are normal and they ran another test today to make sure he didn't have another stroke (that's how bad it was) and he has not, thankfully. While the doctor cannot predict what the outcome will be he did say that he is not as concerned about what is going on as he would have been had he not had such a great day the day before. He told us that he is suffering from delerium and hallucinations (which we witnessed) from being in CCU for so long. He cannot guarantee that he will come out of this but it's a good sign that he did have a good day yesterday. He also stated that with one good day there may come 3-4 bad days there after. Since he is not critical anymore, just out of it, he may be moved to another room in the near future.

Today was so heartbreaking and tough to witness. I could see my dad fighting to come out, wanting to come out, and becoming very agitated that he could not communicate. It was especially tough after such a wonderful day yesterday. Day by day they say. Easier said than done.

 
Old 04-16-2012, 10:18 AM   #8
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Re: Wanting Dad back

Mom called the hospital today to check up on dad and there is no improvement. He did not sleep last night and was very restless. I've been told to stay away today. I told dad I would visit him today, I hope he's not wondering where I am.

 
Old 04-16-2012, 12:59 PM   #9
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Re: Wanting Dad back

I know its very hard to go through this. Keep positive and hold on to the fact that the doctors said he was showing good signs when he had that good day. Its also good that he has Not had a stroke. I know its hard when you see your loved one in such a state. Our prayers are with you. Let us know how your doing.
God Bless Mulchie

 
Old 04-16-2012, 06:44 PM   #10
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Re: Wanting Dad back

Dad was transferred to a new hospital as they discovered a severe brain bleed in the front of his brain (new stroke, different from the blockage stroke). This accounts for the confusion and loss of communication which was being written off as delirium. Being as he had such a great day Saturday and such a bad day Sunday they've determined that this new stroke occurred sometime between Saturday night and Sunday morning. They found the bleed on a new scan done today. The neurologist says that since they were keeping his BP higher to reduce the stroke risk from a blockage that it actually made him suffer a new stroke (the bleeding). The doctors are unsure of what this outcome will be but we've been told to prepare for the worst, death. They are going to dehydrate him with the hopes that the blood will dry up on it's own. If this does not work, and they see from a new scan later tonight/tomorrow morning that the bleeding is getting worse, they are either going to put in a shunt or open his brain to stop the bleeding and swelling. As it is now his brain is very swollen and has shifted. They are trying to keep the damage at a minimal and keep from damaging more of the brain that's already damaged from the previous stroke.

We've been told that each procedure is very risky and that they cannot guarantee any results, nor can they say whether he will make it through, nor if he will ever be able to communicate again if he does make it.

Everything just keeps getting worse and worse.

 
Old 04-16-2012, 06:53 PM   #11
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Re: Wanting Dad back

Oh my gosh I am so sorry to hear that. Very devestating for your dad and for you and your family. Remembering you in our prayers in hopes that he will be given nothing but excellent care.
Please keep in touch Our hearts go out to you all
God Bless Mulchie

 
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Old 04-19-2012, 05:59 PM   #12
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Re: Wanting Dad back

Dad is still with us (thank God) and still in the hospital. They opted not to operate and instead are allowing the brain and body to heal/absorb the blood itself. He's been haivng CT scans done daily to check on the bleed and swelling to make sure it's not getting worse. So far it has stayed the same, which the neurologist is happy about. We've been told it could take a month for the blood to absorb.

Yesterday my mom went to visit dad and had on and off conversations with him for two hours. He was able to form sentences but had a really hard time coming up with words or what he wanted to say. A lot of the time he could not come up with the word. He did better when he initiated the questions/conversation rather than when my mom did. He remembered who she was and other people. He also complained alot about being hungry and being tired of people always coming in and out (doctors/nurses). My mom asked the nurse if he could eat but she said the last stroke left his swallowing abilities very weak so he could no have food. He's also very frustrated with himself. The neurologist said that his tiny baby steps on Wednesday showed optimism but that he is not out of the woods by any means and that he could still regress, stay the same or worse (our fear and what we were told was happening Monday). She cannot guarantee any progress or recovery. She also did a test with him where she showed him pictures and asked what they were and he could not come up with the words. She also asked his name and he replied, three times, with Puddingtane.

When he was first transferred we were told to expect the worse, death, and that he was in the highest level of ICU at the hospital. The doctor told my mom yesterday that if he remained stable and did not regress that he may be moved to the next level down, still an ICU but not as intensive. He was moved today. He is now in Progressive Care. When my mom visited him today she said he was very tired (it was late, 6pm) and didn't talk too much but my uncle did get him to laugh. He also ate today. He had some chicken, mashed potatos and peas for lunch, thickened water threw a straw and some pudding. He's been starving. He didn't want to eat the pudding but my mom and uncle encouraged him to by telling him he needed strength to improve and get better. He did eventually eat some of it. His swallowing abilities must have improved enough for him to eat.

My mom says that he seems very sad and depressed and that he's very frustrated with himself because he cannot do things or get his words out the way he wants. She says that my brother and I need to visit him to cheer him up so that he can keep improving. I want my dad to get better so badly and will do anything to get him better but am so scared to see him. He's a shell of the man he once was and may be this way forever. I need to see him though so that he knows that I'm there for him and need to urge him to keep going. I'm going to attempt to see him tomorrow morning. The earlier the better as he tires easily later in the day.

I'm so sad for my dad. He was so independent, strong and sociable and now all that has been taken away from him. I know that many stroke victims suffer from depression at some point and time. Is it possible that they'll give him something for this? I'm afraid it will hinder his progression.

 
Old 04-21-2012, 10:32 AM   #13
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Re: Wanting Dad back

Yesterday my brother and I had a visit with dad. He looked good, looked like dad, had good coloring, face wasn't sunken in as it was before. He seemed genuinely happy to see us but was a bit puzzled by us for a few moments until he realized who we were (mom said to expect this). We tried to have some conversation with him but it was tough. He could only come up with one word answers, facial/body expressions, and at time some small phrases/sentences. You could see how hard he was trying to come up with the words he wanted to say but just could not and he was extremely frustrated with that. He did get some smiles and laughs out of him while visiting, which was good. We only stayed for 2.5 hours as he was getting tired and wanted a nap (something he told us) before lunch.

Besides looking like dad, he was upgraded to soft solids and normal liquids, which he was very happy about. When the speech pathologist came in to test his swallowing skills I asked if she thought there could be improvement in his speech/following of comands and she said she couldn't say. Some people do, some don't. This is the answer we get from everyone which is because it's the truth, sadly. He also got to start wearing his glasses again. His BP is being monitored and is at a happy-medium of between 120-130. His right arm is much weaker than it was before. The nurses were supposed to get him up and standing yesterday but I don't think that happened. I'm going to assume this was because he is weak from having no caloric in-take for almost 12 days. He is going to start Ensure "milkshakes" along with his regular food to start building up.

I know this question is obscene in the sense that there's not a real answer, but what are the possibilities that he will regain use of his speech and communication skills? Is it possible? Has anyone here, themselves or someone they know, ever gone from minimal speech to being able to communicate in a somewhat way? I just can't see my dad never talking about. He's incredibly sociable, loves to talk to everyone, and I know it will kill him not to be able to talk. It's already putting him in a downer state (which they've started him on Celexa for). We prepare for the worst and hope for the best, this I know, but I just wish there were some way of knowing what he will regain.

 
Old 04-21-2012, 08:16 PM   #14
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Re: Wanting Dad back

Oh my gosh yes it is possible for him to regain his speech. Tell him that and tell him not to give up. It is all so soon and recover is slow and steady as long as you dont give up. When I read your email I senced he was improving and I am so glad. Even though the steps are small it is wonderful to be moving in that direction. It is so hard when speech is taken away. It can cause so much frustration. But reasure him that it will come back. Like I have said before how much your dad will recover we dont know but he will improve. Having a stroke is like hitting a wall. Emotionally it is very scary and depression is a common thread. Keep telling your dad he is going to get better. He needs to believe it and he needs to be hearing it. Tell him his brain is swollen and when the swelling goes down he will feel better. After a stroke we do not know what our life will be like but we do know it will never be the same. In saying that Im not saying it is bad it is just different. Continue to tell him he was saved for a reason so keep positive. Tell him that recover is a slow and steady process and not to give up. Tell family to try not to tire him out and to encourage every minute you are with him. He has been on so much medication that too has its side effects and take time to get out of his body. Keep good thoughts and keep the faith.
Thank you for your continued posts. It helps so many other people to read your post. God bless your family as you all stand true and faithful to your dad. Keep in touch.
God Bless Mulchie

 
Old 04-24-2012, 05:05 AM   #15
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Re: Wanting Dad back

Since Friday I have visited Dad on Sunday and Monday (yesterday). There was a definite improvement from Friday to Sunday and even more so from Sunday to Monday. On Sunday they got him out of bed for the first time in 12 days. While we knew his legs worked we weren't sure if he'd be able to stand, never mind walk, due to weakness. The nurse was impressed. He sat upright in a chair for 45 minutes and then went back to the bed as that exhausted him. His speech was a bit better that day as well and he joked and laughed a lot. I had brought my boyfriend along and was unsure if he would recognize him but he did and even said "Bye Jeff" when we left. He also finally knew his own name!!!

Yesterday when I visited we had actual conversation with real sentences. They were fully formed, normal and good sized sentences. He understood what I was saying, I understood him and he was remembering some things from earlier in the day and the day before which he has been unable to do. While he was able to form sentences his voice was still very weak at some points. Sometimes he sounded like himself but other times I would have to get very close to hear him. He also was out of bed yesterday for much longer but wanted back in bed as he was tired. (This was while my brother was there). When I visited him he had not had a nap or rested as hospital staff kept coming in. He was not pleased with this one bit. Haha.

Once dad began to get very tired he started to get confused and was saying very odd things. When I asked what he wanted for dinner he said, "Lemonade, lemonade and lemonade" I told him he needed food and he said, "I know, I told you, I want lemonade, lemonade and lemonade". He truly believed he was listed what he wanted to eat but just kept repeating the same word. This happened again when I told him I was ordering him roasted turkey. I finally got him to list what he was getting after having him repeat me. He also said random words. He looked at me and said, "Solids" and then started looking around. He is now allowed to use the urinal bottle and the restroom (with assistance) when he needs to go, so I thought he was trying to tell me he needed the restroom. I kept asking him what solids and he finally said, "Where are your solids?". I have no idea what that meant and he was aggravated that I was unsure. He also randomly said "Kit kat" so I thought he wanted a Kit Kat bar (unlike him). Asked if he wanted one, he got made. I then asked if he was saying "kitty kat" and he said yes but wasn't sure what he was saying that for as I asked him. I'm assuming this is normal with aphasia and something they can try to work on in rehab during speech therapy.

Speaking of rehab, dad is set to move to an intensive rehab today as long as the insurance goes through. He'll be going to a rehab facility where he'll receive 3 hours of therapy per day. All the other rehabs were only offering 1 hour of therapy per day. The hospital has really recommended that he get as much therapy as possible so were hoping for the insurance approval to go through.

While we are still on guard as it's been such an up and down ride for the past 3 weeks we are happy with the improvements we've seen. Last week we were told he was dying. This week he's moving on to rehab and improving little by little.

 
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