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Wanting Dad back

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Old 05-16-2012, 03:00 PM   #31
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Re: Wanting Dad back


That is just a wonderful update, and thank you very much for sharing your inspirational story..

From everything you said, it sounds like your dad is on his way back. He is still very early in his recovery, which for most of us goes on for years.

I would not spend a minute worrying about any doctors, as they are not there with him every day as you are. Just think where you were even two weeks ago! Just imagine what things will be like by mid summer or even better by Christmas time!

I agree that finding him something he enjoys for now is important, I remember the boredom very clearly and the sense of not being independent. The more you allow him to do safely, the better off he will be.

Have you tried very large print playing cards, or getting him a reading service for the newspaper? I know in our city, visually impaired individuals have lots of programs to help that are free. I would check them out.

All in all I feel very excited for you and your dad. Never give up hope and keeping his loving family near him will help more that anything in the world.

Keep us updated, your story will be very helpful to others who are seeking inspiration for their own family member, and other stroke survivors.

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Old 05-16-2012, 06:25 PM   #32
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Re: Wanting Dad back

Hi Orange Blossoms, I'm sorry I'm coming in so late in your thread. but if you look at my track record? that seems to be par for the course for me. I usually come in last, put it in sports terms, I guess you can call me the pinch hitter, the bench warmer, the third string, even junior varsity? that being said, being last doesn't mean I'm less experienced or less knowledgeable in stroke recovery. just the opposite! I think? I'm one of if not the most senior member to frequent this forum? I'll soon be 62 years old- in August, and coming up on 20 years post stroke. I believe my accomplishments and improvements surpass anyone who frequents this forum? I think I'm the only one who visits here who was actually hospitalised listed as being brain dead? even listed as clinically dead for 8 minutes! my heart started back beating while waiting on the doctor to come to pronounce me, even 3 weeks later wanting to harvest organs. I attribute all my accomplishments to my determination, attitude, positive personality, and desire to better myself.

enough about me, on to your dad. I believe you'll find he'll do most of his recovery faster at home, in his known environment/habitat, where he is accustomed to naturally, not being told when where and how to do everything he does! he can learn on his own better than therapists can teach him physical and occupational therapists only know what they've learned from books and classes. a brain injury physical therapist is a whole nother specialty, there is no plateau to reach and be done, no bar to raise to set goals to be met, at home, he is the boss! the sky is the limit. he can set his own goals and meet them in his own time. there is no more "in 3 weeks you should be from point b to point c. it's now up to him and your family to help him along, and he WILL NEED HELP. he will get discouraged at times, that doesn't mean it's a set back, only there is more work to be done. it'll take time, but he'll learn to think, Analise and adapt to do the things he really wants/needs to do. at home he is on his turf, not other's he can learn ways to do thing the therapists and doctors/nurses have never seen or heard of. who cares if he puts his shirt on bad arm first? what matters is he gets it on! who's business is it if he wears shoes with velcro and no laces? if he is comfortable wearing them? I do if he should get that one handed way to tie shoes tight? send me step by step pictured instructions please!

has he been proven to be blinded to the right of both eyes? or does he just suffer from affected side neglect? it's not abnormal for stroke survivors to neglect the affected side, I had left side neglect constant reminders to look that way helps left or right when reading, a bookmark or any object placed to the right of the page reminding him to read all way to the object helps. reminding him there is food on the right side of his plate helps. part of the brain forgets there is even a right side if it's the affected side, weight bearing on every part of the affected side helps train the brain into acknowledging the affected side exists, causing the brain to try to heal it, standing/leaning on the affected limbs does a lot. a healthy die is a must also. egg yokes are supposed to be good for the brain? when I was in the hospital they gave me eggs for every meal fixed one way or another. but the yoke hold the most calories and not great for cholesterol. genko, is said to be good for the brain? but having lived near genko trees in the past with the smell of them, no way I'd intentionally put that in my body!

with all that said, you can kind of see why I go last? 4 hours to type this post one fingered! what would be best, is if you could get your dad on here posting his own questions gaining from those of us who've experienced everything he is or will go through. we don't care about spelling grammar or punctuation, periods,comma's or running sentences long? we just want to help those in need.

good luck and god bless

happiness is a way of life, not a goal in life, success comes in cans not can'ts

Old 05-31-2012, 08:12 PM   #33
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Re: Wanting Dad back

Hi Everyone!

I thought I'd give another update on dad. He's been home for 3 weeks now and there's been a lot of improvement in that time. He is no longer walking with a cane (PT signed off on him), his right hand is starting to get slightly stronger (OT finally came even though PT said it wasn't needed... ridiculous!), and his cognitive abilities are improving a bit. When he left rehab he could write but it wasn't legible. Now he's writing much better, and while it doesn't make sense 60% of the time, at least he's writing and he's trying his hardest. His ST has labelled his word finding as 'mild' but has said that his main issue is categories, how the brain groups each set of similar meaning words/objects, and that loss is 'severe'. She's been working a lot of getting his categories straight but has said that she can't say whether it will get better as we don't know if the nerves that command that part of his communication are dead or need time to rewire themselves. His reading has also greatly improved. No, it's not even close to how it once was, but it's much better. The ST was impressed with his improvement from Tuesday to Wednesday this week! He's learning how to focus his eyes and head so that he can see the right side of the page (yes, his right sided blindness has been proven). He tries to read 1.5 pages of a book a day. What's great about his ST is that she has been in the field for 30+ years and was on the team that designed the stroke program that most of the US rehabs use! We didn't even know this when she was assigned to us, she filled us in, and it was a great surprise. In her 30+ years she's only met 2 people (1 being my dad) that have the type of aphasia he has. He starts off using the right syllables of the word he wants but finishes it off with a different one, making the wrong word. While this is helpful for us, as we can guess what he means, it's hard to treat as there aren't many cases like my dad. Leave it to him to have a difficult case. Haha

While his aphasia can be humorous at times (he told my mom that he took a REEFER in the bathroom the other day... he meant RUG!!!), and he'll laugh before we do, he becomes very frustrated at times as well, and I cannot blame him. He says often that his head is messed up and there's nothing left in there. This kills me and I try to tell him that all his intelligence is still there, we just have to work on cleaning up his head a bit. He doesn't agree and just says that everything is gone. He is working his best though and isn't giving up. He does all of his exercises and homework multiple times a day. He's truly trying.

Now I need some advice, if possible. Today my dad told me that my mom gets very aggravated with him when he uses the wrong word or has to be reminded about the same thing over and over again (short term memory is still scarce but improving). I can tell that this hurts my dad just from the way he told me. I also know that to be true as my mom has said that his aphasia, memory and personality change drive her crazy sometimes (he's very demanding now at times and also has NO verbal filter...). I told my dad that it's not his fault that he uses the wrong words or can't remember, to not be worried about it, and that she's wrong for acting that way. What I'm looking for is some advice on how to go about bringing this up to my mom. I don't want her feelings hurt either but she needs to know that this isn't helpful and that he cannot help but to use the wrong words as he has a disability, one he's trying to overcome with much effort. I've already told her previously that this is how he is now, we have to live with it and that him being this way is much better than him being dead. She agrees, she just can't help but to feel the way she does. Understandable as I would give anything to have my old dad back but showing your aggravation and frustration isn't going to help him, it's only going to make him feel worse. He already feels badly about it and says that he's sorry he did this. I tell him there's nothing to apologize for, that no one plans or chooses this to happen. Anyhow, any advice would be helpful. I feel stuck.

Thank you all again for everything. While I am distant, I am always thinking about all of you and check in often on everyone's threads. It's wonderful that you're all able to do everything you do. Especially since most are written off by doctors as soon as the stroke strikes.

Old 05-31-2012, 08:22 PM   #34
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Re: Wanting Dad back

I also have another inquiry. Any ideas on what would make my dad randomly, and then continuously, hum? He'll randomly start humming a made up song and will keep going at it for hours. Some times it's very loud. I've asked him what he's humming or why he's doing it and he doesn't realize that he is doing it! He will then catch himself doing it afterwards and say, "I don't know why I'm humming". He used to hum in the shower all the time before the stroke, so humming is semi-normal to him but he would never hum outside of the shower. He also says, "HMPH" with his mouth closed over and over while he's watching television. Not sure if he realizes this or not. I don't want to ask as I think my asking about the humming made him uncomfortable. He now says he's think he's "going nuts" when he catches himself humming.

I don't even know if there is an answer about either but I thought I'd throw that out there. Maybe someone here does this as well or knows of someone that does. It's perplexing to say the least.

Old 06-01-2012, 02:27 AM   #35
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Re: Wanting Dad back

Oh, the humming! I get caught doing it all the time, much more before than these days, but boy have i embarrassed myself with that one!

Once, I was on hold with a friend, and I just started humming this very weird song over and over. I had forgotten that I was even on the phone, and who knows how long I was humming. Eventually I hung up the phone, which rang again a bit later. It was my friend who was laughing hysterically, I tried to deny it, but how could I? I used to do it a lot, usually by myself, but even as recently as a few weeks ago, my husband caught me and thought I was nuts. I had to laugh, I am a terrible singer and hummer.

It never even crossed my mind until you mentioned it. I think I did it to soothe myself, now that I think about it, or to help me concentrate on something.

It sounds like he is on the right track, and you will continue to see a combination of steps forwards and a few back too. Thank you so much for the updates. I know it can get hard to keep it all going, but we appreciate all the stories that can encourage others. Lots of people read, that do not write, so for every response, know there are lots of others learning and enjoying your dads progress and supporting him in his struggles.


Old 06-14-2012, 06:31 AM   #36
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Re: Wanting Dad back

It's nice to know that the humming is something that you, as well as others, also do. His humming has dissipated a bit, but not a lot.

This week dad has been discharged from occupational therapy as well as the visiting nurse. While this is good, it's also bad as next up is speech and he truly needs all the speech work he can get. Insurance is urging everyone to sign-off as they don't want to pay for the therapy anymore. The speech therapist is trying her best to keep the therapy going but I don't think it's going to last longer than one more session next week.

Physically, you'd never know anything was wrong with my dad. Mentally, he's a mess. He can't remember how to do the simplest of tasks. Where to find things. What is wood and what is plastic. From what we've been told, and from the lack of improvements in this area, it doesn't seem as though it's going to get any better. He's not the man any of us used to know. It's as though he lives in his own little world.

I try my best to help out in any way but it's not enough. My mom has such a hate towards me and says my dad is verbally abusive towards her (I've never seen this, all I see is him not knowing how to do something and asking questions over and over), and that I can't understand as I don't live there. I just don't know what more I can do or what I can do at all anymore. My heart is completely broken and as much as I try to help everyone, it's useless.

Yesterday and today have been horrible, horrible days. I hate strokes so much. I hate what they do to people. I hate what they do to families. I hate everything about them. Wishing isn't helpful but I just wish everything could go back to the way it was before. Before April 6.

Old 06-14-2012, 06:55 AM   #37
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Re: Wanting Dad back

Oh my dear, my heart goes out to you. You are so frustrated and rightly so. I agree with you evaluation of Hating strokes and everything associated with it. They dont just change the persons life the stroke has a horrible impact on the entire family. We know this and share in your pain and frustration. I am so glad you can come here and pour your heart out, we all understand.
All I can offer you is hope. Your dad's very early in recovery and will continue to show improvement. Because the recovery is slow in progression its very hard to sit and watch their frustration as well.
It certainly doesnt help when you and your mom are frustrated with each other. It sounds like your mom is having a difficutl time coping.
You are trying so hard, and you love your dad so much I can tell in your posts your heart is breaking. Please dont give up on yourself or your dad. I will continue to keep you in my prayers and remember, keep hope alive. It is all we have to cling to sometimes but with hope comes the belief that recovery will continue and life will get easier for all of you. Hope ignites the possibilities of healing and moving forward. With hope comes faith that tomorrow will be a better day. God Bless Mulchie

Old 06-15-2012, 11:55 PM   #38
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Re: Wanting Dad back

G’day Orangeblossoms,
HATE is putting it lightly; I wish I could describe the feeling I have toward strokes. It’s crazy, unreal, angry, confused etc., etc. All I know it hurts.
I’m a stroke survivor and also a carer for a loved one that suffers from dementia and is bed ridden. The caring is 24/7 and is shared among the siblings. Even so, there are days it’s so frustrating, because you don’t know what to do for your loved one. There are days it’s hard to communicate, not knowing what the person is trying to say to you, you feel helpless. Sometimes words are said that no one really means, there just born out of frustration. In the heat of the moment people say thing they really don’t mean. I can understand what your mum and you are going through. The pressure your under would be enormous, believe me I know.
Like Mulchie said, it’s still early days in your dad recovery, he’ll well improve, how much and how fast, no one knows. You just have to hang in there. Time cures just about everything, try to be patient. You have to be there for each other, sometimes it seems impossible, that’s when you got to dig deep.
I hope your dad keeps improving, and you all stay in good health and sprits, and remember you can always vent as much as you want, right here. There’s always some here listening.


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Old 08-03-2012, 08:00 PM   #39
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Re: Wanting Dad back

Hello everyone,

It's been a while since I've been here but it's not because there hasn't been anything to report, my life has just been so crazy!

Dad has been doing well. His speech is improving every day and he's almost back to the weight he was before he was hospitalized. Luckily, he's still getting speech therapy and hasn't been cut off by insurance yet! We're thinking the time is coming soon though... Insurance companies are evil. Unfortunately his sight has not improved at all. He had a neuro-eye appointment and it was confirmed that the damage was done to his nerves, not his eyes, and that it's highly doubtful it will come back. This means he cannot work nor drive, which is hard for him to take. Other than that, he's doing well and the doctors are impressed. Unless something happens he doesn't have to see any doctors or specialist for 6 months.

Being as he cannot work due to his eyes and cognitive issues we have started the long process of filing for disability. Or, should I say, the long process of 'wait and see'. We're all crossing our fingers that he's approved as we really don't know what my parents will do without the second income. You think you've gotten through the tough stuff once you've worked through the stroke but then there's a whole other can of worms...

Ok, so I know that I said my dad has been doing well but today was alarming. He has a terrible time with his words, his memory was worse than usual, he was slurring a bit, and his voice was weak. This frightened me terribly, especially since he noticed it as well (the word finding/memory issues). I had noticed the night before when I was visiting that his voice was weak but he had just gotten up from a nap (which he has not been doing at all) and I wasn't sure if maybe that's how he is now when he awakens. I mentioned my concerns to my mom and asked her is she thought he was "normal" today and she said no but that she wasn't concerned and would keep a watchful eye. Later in the evening my mom took his BP, which was normal, and said that he had made them dinner and he's just tired. I know there can be good days and bad days but he hasn't had any bad days since coming home from rehab and I'm so terrified that something is going on, that he's having another stroke. I'm constantly worried that he'll have another stroke as I know the risk is so high and his decline today worries me a serious amount. The fatigue, memory issues, and elevated aphasia difficulties is so worrisome to me. I brought up going to the doctor to him but he was against it. Am I wrong to be worried? Is this just a bad day? Can you have normal BP and still suffer a stroke? I think I'm going out of my mind... :/

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