Ya, the A-hold is actually NOT my dad’s doc. Just the guy who was still there late on Friday and also over the weekend. Our actually doc is way nicer and seems great. It’s just I never seem to be there at the same time. AND I also left the nasty message for the case worker Friday night and followed it up with an email this morning. So that guy…probably won’t be doing much with my dad in general
His strok was in the right frontal lobe. So really, speech and cognitive wise, he doesn’t seem to be affected much. So far it’s his loss of mobility on the left side, a bit of possible vision loss in the left field, and what appears to be getting easily distracted. Honestly, I think once he gets some strength back “HE” will be much more there. His ability to navigate and move and such…not sure and don’t know how long that may take to really get any decisive info on what may be pretty much lost.
And totally agree on the nutrition stuff! He is actually eating a bit better even if it’s cause I have to force him! I expressed my concern on Friday and made sure the case worker understood the length of time it had been since eating much or being on an IV at the least. She talked with the docs and they wanted to see what happened over the weekend before force feeding him with a tube and such. He did better the last few days, although not great. Still totally better. So we are still crossing fingers.
And I know he must be freaked out. As you said, this can be hell. And I’m worried about his emotional frame of mind. Waiting to hear back about a psych eval and what there plan is for counseling and such.
He is a lot like me. Only meaner, more demanding, and less patience All good things if they still exist. I’m not sure about it yet. But I’m hoping that encouragement and notes from his friends and such will help him out. And of course I don’t let him get away with anything and will push him as hard as he would have pushed me if the situatation was reversed!!! We are both strong willed and I’m hoping with everything that I have that he will continue to be
I had a stroke caused by an avm 24 years ago. I was 11. It was also in my right frontal lobe and I have paralysis on my left side. I vividly remember being in the hospital 'trapped" in my body unable to communicate. Reading your dads story is bringing back lots of memories for me… I had just learned sign language in school and remember trying to sign words to my nurses and parents. Talking was hard, lifting my head was hard, eating was a challenge, etc… Anyways…it takes time to heal the brain… and he may just be overwhelmed by the physical challenges and exhaustion he is facing in ‘rehab’. I hope your dad has a speedy recovery and you too for that matter. Take Care! Kristin
Shalon, I remember the stroke check list too but I can’t remember who posted it. I even commented on it. I tried to find it but I can’t. I’ll keep trying, see if I can get it for you.
You are very welcome, Shalon. I was in the hospital for 35 days total for my ordeal but I honestly can only recall the last 1 - 1 1/2 weeks of my ‘inpatient rehab stay’. Although I do remember all my therapists, I do not recall the ‘swallowing test’ being performed on me by one of my therapists. (I read about it in my medical records after I was discharged from the hospital.) But my point on this is: even though the ‘swallow test’ showed I could swallow/handle food consistency of applesauce (& I even told the therapist that conducted the test that it felt like it was choking me at the time), I had to relearn the ‘swallowing technique’ and on my own (no one - no doc, no nurse, no rehab therapist… no one informed me how to accomplish this). My choking comment/feedback was ‘disregarded’ as I read much later on my medical records that even though I made the comment, I was considered (by the therapist who conducted the test/evaluation) as ‘successful’/‘passing’ this evaluation. Even now (almost 14 months post bleed/emergency surgery/& hemorrhagic stroke) my appetite & desire to eat is still ‘off’ and I eat sooooooooooo much slower than I use to (which takes me a lot longer to finish eating), and I avoid eating things that give me that ‘choking feeing’ (even if it’s something that I would normally love to eat). Fatigue, weakness (his side weakness), and his mentality/mood will also play a role in whether he eats or not.
A far as any test and evaluations, keep his spirits lifted. I don’t remember the therapists telling me what test were being performed nor why (but I’m sure they did verbalize all that information before administering them and I just don’t recall/remember it) and only have knowledge of it because i read my medical records after I was released from the hospital, so if the mere thoughts ‘depresses’ your dad / downs his spirits/mood, then don’t go into ‘details’ with him on the ‘functions’, etc. of these tests… rather, ‘simplify’ and ‘candy coat’ them by saying it’s just something they (the medical professions) needs to do or wants to try for ‘fun’. (I’m not saying ‘lie’ to him; rather, I am merely saying that he doesn’t need any unnecessary mental stress over it and there really is no need to have him know & potentially stress over this when it (the exams) are going to be performed on him anyway. As all of us are aware, it’s sooooooo true that just because one smiles and appears to be fine/joking/etc., they can be harboring & hiding different emotions &/or thoughts on the inside.)
Shalon you must breath properly . I know you know how …please try to do so . You are important Shalon just because you are you . Sorry but you can not do this work for your Father and your Mother will find the means within her to help her husband - you are all the same circle yet have unique roles , yes ??
I am reading on a Steven M. Greenberg MD , PhD ; He is Director of Hemorrhagic Stroke Reaeaech program at Massachusets General Hospital and Professor of Neurology at Harvard Medical School ( fairly common credentials I know but this group seems to hone in on the CAA and mitigating/contributing factors ( including familial aspects) so I am reading .
Strokes in general in my un-learned opinion with my limited personal experience CHANGE us in temporary and permanent ways . I know you know that . One breath , one moment , one task , one day at a time is not BS - it is mandatorey survival mode .
Food is at tricky and quirky for many after strokes as it was for me …not only the chewing , swallowing BUT the visual , the odors , the texture and the taste can be OFF and undesireable as can be foods of different types for a while . Perhaps something new and some OLD favorite from child hood to try ? I did better with foods I HATED before the stroke than with foods I enjoyed before the stroke . We are all unique …and I am simply odd .
This is your Father’s journey Shalon …he will find his path , it has only been a moment but he WILL get there one moment at a time ; He will find the mind and means to get where he is intended to be . It takes time , patience , love a strong heart and a fearlessness that enables one to KEEP TRYING one thought , one word and one sentence at a time .
Please know that you and ALL of yours are always in my positive thoughts and loving prayers . Everyone sends hugs and love .
BEGOOD TO YOU . TAKE CARE OF YOU . Please try …
Shalon - I just now read this blog about your dad (I really do need to look at these once in a while! sorry).
I’m really glad to hear he’s improved, and I hope he’s improved much more since your last update. I wish I had something to offer in the way of information/advice, but I don’t know anything about the kind of stroke your dad had.
I do give you and your family my best wishes, and support anytime I can help.
Keep taking good care of yourself along with all the TLC you’re giving to your dad.
Man I bet you feel like one step up and two steps back. My insight would be that every stroke is different and the symptoms and effects of Stroke and Surgery can be wide ranging and intermitted. I understand that my intrust and interactions, anger, awareness, comprehension all ebbed and flowed over a day or week. I guess what i am trying to say is that I have found that most nuro-type Dr’s don’t like saying “I don’t know.” and the first month after a stroke and in my opinion after brian surgery NO ONE knows what will be a lasting issue and what will pass and what will be re-acurring. I had crazy dreams and believed for a time that the whole thing was something I made up in my head, when people came to see me and I didn’t want to see them i told myself I would make them disappear but I just simply went to sleep for an hour and when i awoke they were gone. but i was out enough to think i controlled it. It’s a tough thing and all you can really do is talk to him and love him and try to keep him with good rehab people. Past keeping him alive the MOST important thing is good rehab. Good rehab came make a small issue go away and a big issue something that can be dealt with. I would also recommend finding a Neurologist that is not your surgeon who can council and kind of oversee what the course of treatment should be. Good luck, my god be with you all.
