Just looking for some advice not an official legal/medical opinion. My dad has just had 2 major strokes (within the past couple weeks) and it's bad - he can't see, can't talk, can't write and we aren't sure what he understands...oh and his right side is numb. He's only 69 and the best man I know so it's quite devastating. I'm also an only child and my parents divorced long ago so I don't have too many other people to bounce stuff off. I know it's going to be a really long recovery (if at all) and I'm quite angry with his regular doctor about all this. My dad has been on blood thinners for years, and has been hospitalised in the past for clots in his legs. About a month ago he was driving and everything got dim and blurry so he had to pull over, it lasted a few minutes then went away. This happened twice and both times he went to see his doctor about it, who apparently did not see any urgency EITHER TIME and basically dismissed it. About a week later everything went dark when he had a stroke that took out his vision and some memory. A few days later he had another one that took out language, right side and more memory. Anyway I'm looking for feedback on whether I should try and sue the doctor for not reacting to my dad's concerns more urgently? Or is that crazy? I'm just SO MAD and I want my dad to have the best long term care and I don't know how we are going to pay for any of that...I also live/work about 8 hours away. I'd be willing to re-locate but jobs are scarce. Thank you.
So sorry to hear about Dads stroke and the terrible initial outcome. He si my age so I get the gist of the shock.
Emotions run high. Most definitely do not even think of sueing right now. You need to refocus on Dads long journey of recovery. In a short time he will be passed medical fit and then its all recovery. The negativity of legal anything will weigh heavily on you and him.
Please think about your wish that Dad has the best care. That will cost the system plenty. Your sueing would remove huge amounts of funds from the system. Can you see the equation forming.
Strokes are usually out the blue. Even if there was a suspicion of a stroke coming (if that's even possible) then how would the medics proceed . Keep Dad in the stroke unit 24/7 for years, probably not the best.
But lets go back to Dad. Do let us know how he gets on.
Thanks so much, Colin. I appreciate your reply and it makes sense. I'm so worried he's going to have another stroke or doesn't recover from these ones. The doctors keep calling his case tricky or complicated which is not reassuring.
The past few visits have been pretty sad, I think he is getting depressed but I don't even know how much he's aware of so who knows. He is known for being super positive and happy all the time so to see him like this is just the saddest most unfair thing ever. I used to believe in karma but no more.
When Dad gets a bit better then his positive and happy attitude will help a great deal with his recovery. A great deal.
The first month after stroke we can be vulnerable to further deterioration but lots of us have no such deterioration. Getting medically fit is amazingly quick. Its then rehab or recovery for a long long time.
In the first few days I had hallucinations (I believe this is not so common) and was away with the fairies. Sleep sleep and more sleep. It was too much effort to communicate with the real world so I just hid in my semiconscious state. It was fine in there.
Prayers for Dad. That might get through to him. Cant do any harm.
Yes stroke is unfair. Very cruel and very sudden. But I lived through it and there is life after stroke.
And I am a weak and feeble soul. I was 68 when the stroke bit me.
Do keep us informed please.
And say high from me.
thanks for that Colin that is some really encouraging information. Until I know otherwise I will assume he's just floating around not really conscious or super aware of what is going on. I am currently focused on him making it to the recovery stage, but once we get there I know that will bring another set of challenges and I AM praying that he is strong enough to get through all of this.
Actually, I have a question for you on that, and I hope it's not offensive I just feel so lost with how to approach these things. Basically wondering if you were ever at the point where you could think without any issues, but couldn't communicate or translate that into speech, movements etc. And IF that happened, did you feel like people were talking to you like you were a child? I'm worried about being condescending unintentionally. Do you have any suggestions on how to avoid that? Like should I be trying to help him sound out words and stuff (when we get to that point) or will that just make him feel bad? And is there anything else people did or didn't do that you wish they had done differently at various stages in the recovery?
Hi Jen,Like Colin,I was 'out of it' for at least a week. In fact, part of me felt as if it was floating round the ward. Then, one morning, I woke up and I was 'back'. Hard to explain really. Recovery seemed to start from there.
Communication was difficult and I found visitors exhausting. I understood people's sorrowful smiles, but could have done without them. When I got too overwhelmed I thanked people for coming and told them to go. I also got institutionalised very quickly, but the hospital staff gave me 'tough love' which was vital. I remember when they wanted to take my catheter out I told them I would have to think about it over the weekend. Early Monday morning, I told the Sister hat I didn't' want it removed. Her reply was, 'We're taking it out in an hour's time! She was right, of course. As Dad starts to recover, do remember that, although frightened and scared, he will need to be encouraged to be positive. I am still partly disabled, but am amazed at what I can now do. Wish Dad all the best from me.
Ask me what you like. And no you are not offending me one little bit. If you think anything that you want to say is over sensitive then you can private message and then its just you and me.
My period of being semi conscious was only two full days. Others are much longer in this state. John has explained things very well, he is a wise and good man.
During the first days I just could not cope with the effort of conversing. I was not thinking clearly and for a long long time, many many months, I could not think clearly. But at first it went like this:
People made a noise at me. My brain was at 101% capacity just to make that noise in to words. Then I had to work out what those words meant. Then I needed to consider a reply, turn my reply in to words and then speak them. Doctors nurses and HCAs were good at grasping this. They would only ask relevant things. They would speak in short sentences. They then waited for my reply.
I would often just give up part way through this procedure. In fact 21 months on and I still have to "give up" on some conversation. But in the first days I did not want to know that it was snowing, that George had asked how I was etc etc. So I asked my wife to sit and read/knit/have coffee/go for lunch. She was good with this.
So may I suggest that you need masses of patience with Dad. Think very carefully before you ask anything. Anything at all. Things like "Dad I am here to sit quietly with you" are what I wanted to hear. "No need to speak Dad, just squeeze my hand if there is anything you want me to do".
So no, I never got to the stage when I was treated as a child. Nor did anyone sound condescending. Please note that I could just about speak when I needed to. Others are in situations when they can not speak at all, or, if they can, then the words don't come out right. They need other considerations but its too early to know that as yet. The staff will know if Dad cant speak. Then you move on to using tablets (electric ones!) or in the worst cases blinking an eye etc. But that's not the case for Dad as yet. One man on my ward was recovering enough to be out of bed, but everytime he spoke it came out as "no". So the nurses would say "if you want coffee then pat my hand once. If you want tea then pat twice. "
That worked well.
So I think I am badly trying to say that at first very little conversation. When you know what faculties Dad is recovering, then maybe other communications.
Stroke can cause deafness, mute, blindness and anything else you might care to name. And every stroke is different.
You are spot on, you are waiting and praying he makes it to the recovery stage. Terrible times for you. I was so lucky with my miracle fast initial recovery. So lucky. But lots of us make it and Dad should be one of us. Is he fairly fit, non smoker, not overweight ? If yes then his chances are bright. But never give up hope, our brains are remarkable.
And your very considerate nature is shining through. You will probably do the right things because you are so considerate.
Jen, Every stroke is completely different, you will have to read all the replies you get and sort through which answers suit your situation.
I was totally unable to communicate by voice. All that came out of my mouth was gibberish but my brain still worked at the same old speed. Walking difficulties were soon overcome but I am slow and still have to be cautious.
My fingers were very clumsy and the mobile phone texting facility was a tremendous asset to me after I modified the screen so that I was able to use it as a communication device without my clumsy fingers hitting the 'phone' button.
I started immediately to get my left hand to hold a pen and write. I would daily exercise both hands and there is a page in my diary where both hands wrote equally badly!
My wife, recognising that I was determined to be independent decided to not offer to help me unless I requested it. This was a tough decision for her to make but in the long run was the ideal answer. She did, however bind non skid material around the handles of one knife, fork and spoon set to make them thicker and possible for me to handle.
I now can walk a couple of K a day, can communicate enough to get me out of trouble and do all the dishwashing plus a little housework and limited gardening.
I can write again with my right hand but the result is nothing to be proud of!
Wow John, Colin and Deigh thank you all so much for your responses. I think what stands out the most here is that it's so different for everyone.
It has now been 17 days since his first stroke and about 12 days since the second more debilitating one. For the most part, he can't see, can't write and can't talk, can't move his right (dominant) arm, and can't consistently follow simple directions, and none of that has really improved, though I know we are still pretty early on.
I guess it's at least good he's not getting worse. I have seen a small improvement with his walking, he can go about 50 feet down the hall with a walker and a person on each side of him, so I'm feeling pretty good that he will walk again, maybe with a walker or cane but either way that's great. He can also swallow a little bit (like 5-10 swallows a day), but it's still bad enough that they have, as of today, asked me for consent to have the feeding tube surgically installed directly into his stomach. His swallowing is just not improving fast enough, apparently he would get better nutrition directly through the stomach and he's also pulled the feeding tube out of his nose twice now, and since he can't swallow well that could cause choking and/or pneumonia, so that's why they want to do it. My concern is he's very susceptible to another stroke right now and to have the surgery they'd have to take him off the warfarin for about 6-10 hours. He will still be on heparin but they think the cause of the strokes is a rare auto immune disease (antiphospholipid antibody syndrome) that prevents his body from being able to thin the blood so I'm worried they don't really know what they are doing! But if they are recommending it who am I to say no?
Oh and to answer your questions, Colin, I think he's FAIRLY fit, but not great. He golfs a lot but uses a cart, so not much cardio. He eats pretty well for the most part, maybe about 20-30 pounds overweight, though he's already lost about 10 of that just since being in the hospital. And no he doesn't smoke - smoked pot in his youth but not anymore (he was a hippie!).
Anyway thank you all again, your kind words and insights have helped me more than anything anyone else has been able to provide.
Thanks for the info. He sounds in good shape to effect a faster rather than slower recovery. 17 days is hopeful as most of us avoid a further stroke. I know his cause is very unusual, but I have never had a clue why a stroke bit me. Don't think I want to know !
I reckon that taking in liquid and nourishment and being able to "transfer" are good signs. You can do a lot once you can do those two things. Maybe Dad will be on to those two things soon.
We all have bad days and good days, so don't panic if you visit and Dad seems worse. He will almost certainly be better at the next visit.
If you feel the need, there is a book about someone who had the most collosal stroke and recovered. A lot of technical stuff, but it does indicate how much can be done. Our brains are just amazing. The book is "My stroke of Insight" by Jill Bolte Taylor.
In the meantime Dad gets a prayer from me.
Do ask anything , we are here for Dad and for you