OK So this is now a post about my jackass brother.

[Maraya1969]

Last edited Sun May 4, 2014, 12:14 PM - Edit history (3)

Background - Our mother had a stroke about 7 weeks ago. He came down to FL where me and my Mom live, (she with her boyfriend) and stayed a couple days when she was in the hospital. So he knows how bad she is.

She has expressive aphasia which means basically she forgot every single word she ever knew how to speak. She can understand what you are saying but cannot reply. Although she is in a rehab now and having intensive speech therapy she can now speak small sentences but it is very halting and she even gets confused playing solitaire, (which is one of the things I try and do with her after I saw the occupational therapist do)

Anyway, I have joined Strokenet.com I have looked all over the internet for therapies and treatments for her. I found one drug that they have found useful for stroke survivors and I told the nurse and she is now on it.

I found this video, (I will post the link after I find it here) where a man is speaking of a brand new therapy for people with this type of aphasia. Basically it is the idea that if someone speaks slowly the person with the aphasia will be able to follow them and speak almost like the person. It is quite amazing. I also found a study about this type of treatment and it showed that the people who had it made much greater strides than the others in the study.

So I tried to make a video by myself of just my lips reading a cook book and my camera video was broke. So I asked my brother, who I had already sent the link to the video to, to make some for her. He is a pastor, (the is the big hint) at a Presbyterian church and they know a lot of people so I thought he might know someone with a good video recorder and also because I feel like I am the one doing all the work trying to help our mother and he should do something for a frigging change.

So I sent him the link to the video AGAIN and asked him AGAIN if he would do this for our mother and I just got an email back from him. Here are some of the sentences from the email.

" I read a great deal (hours, every day). But I do not read (much) on my computer screen. And I almost never watch videos on the computer that last more than a minute or two." "

"That is simply my temperament. My not watching the videos is not a matter of indifference to you or mom. Nor is it a judgment on the content or message of the video"
My not watching the videos is not a matter of indifference to you or mom. Nor is it a judgment on the content or message of the video. I have a friend here at XXX Church who often sends me videos of sermons and other spiritual lectures he is excited about. And, I know I disappoint him when I do not watch them. The things he sends to me are on subjects on which I have some familiarity and expertise – yet I find no enthusiasm for interacting with them via a computer and/or video. Give me a book. Or, if the material is available on CD, give me a CD and I will listen to it while I drive. I am currently working on a series of lectures on the history of food while I drive. "

" So, please do not take things personally, or think that I am not interested in mom’s recovery, when I do not watch these videos on the computer. That is simply not a venue easily accessible to me"



OK so basically he is saying that the 5 minute video that I send and TOLD HIM was of a new treatment for the problem our mother is having is not in the proper format for his ass to use.

I feel like sending him the research abstract from PudMed on this type or therapy with the instructions, "Go to page, hit "Control P" then "Enter" and when a paper comes out of your printer take it out and read it you lousy self absorbed bullshit artist.

Another edit: I have been at the rehab almost every day since she has been there. I understand that he can't be there but for the love of God he can't do anything?

EDIT again: You don't have to watch the video. It is just an example of this type of therapy that I am trying to get my brother to understand so we can help our mother using it.

Here is the video - It is amazing what they are doing.

[Tobin S.]

1. You could try the mental health support group, but the lounge will probably be accomodating

Here's a link to the mhsg.

http://www.democraticunderground.com/?com=forum&id=1151

[Maraya1969]

2. Thanks. Maybe I'll put a link up to it in case anyone is now interested.

[barbtries]

3. i think the lounge works.

what did he do? i have an ass of a brother too, but he's good to me. it's just he watches fox news all day and is a curmudgeonly racist so i can only talk to him about things like his health. trying to open his mind is like going down to the ocean and trying to stop a wave from hitting the beach.

[Maraya1969]

4. I'm going to edit my first post and let it stay right here. I can't find a place in mental health

to put it anyway.

[barbtries]

5. go for it

i'm definitely intrigued.

[hunter]

6. Don't act on what I say, but...

... some people avoid internet video like a recovering alcoholic avoids drinking.

It starts with cute kitten and puppy videos and next thing they know they are watching buxom women on trampolines....

Or maybe he hasn't got a computer at home and the church's net nanny blocks youtube.

[Maraya1969]

8. He could have read the pubmed abstract. I should put that in the post. That abstract describes

the treatment. He didn't even read that.

[hunter]

10. Maybe he's still in some kind of denial. I wouldn't doubt it.

I try to give people the benefit of doubt in stressful situations like this.

I hope your mom is as comfortable as she can be, and that therapies to improve her communication skills are successful.

[barbtries]

7. thank you for sharing,

i hope it helped to get it off your chest.
i'm sorry about your mom. my mother had a devastating stroke in 1980. my sister was out of state and my brothers were essentially helpless. the stroke happened on the day my daughter was due and much of her infancy was spent in the hospital, in the rehabilitation center, etc. those days were incredibly stressful for me.
back in those days there was no internet, so i went to the library and learned everything i could about stroke. my mother was aphasic as well. i learned it's the language part of the brain that was affected, so our ideas about bringing her a typewriter, or learning sign language, were no help at all.
she sang happy birthday to me that year; music is in a different part of the brain.
i hope this can help your mother and even if your brother will not take the time to even watch the video, maybe a friend will be able to help you accomplish what you are attempting to help your mom.
in my experience the professionals were great including her speech therapist. maybe you can work with them.
try not to dwell on your brother it will only sap your energy.
you could also respond to his email in a gentle yet honest way, for instance it does surprise me that you are not willing to even attempt this one small thing i've asked of you when it might make a big difference for mom...that's up to you of course.
best to you and your mother.

[Maraya1969]

9. Thanks. Sorry to hear that you had to go through this too. I had never even heard

of it until my mother developed it from the stroke. I'm a little calmer and at least I did not shoot an email right back to him, which is what I sometimes do, to my own detriment.

[Tribalceltic]

11. This is typical

I worked in FL as a home health aide. Almost every one of the families I worked with had one caregiver from the children who was actively involved in parental care. The siblings who would not be involved always interfered with, or complained about the care being given. I have overheard heated, abusive phone calls from people thousands of miles away.

One of my favorite things to do was answer these calls for the caregiver, say the caregiver was unavailable, and I could not give any information on the patient.

I took care of my own mother for over 20 years, was holding her hand as she passed, and wouldn't have missed a moment. Mom would not visit any of my siblings for more than a few days. When my sister would announce her intentions of visiting and "getting her out of the house" she would end up swearing and crying because of the pain involved in sis taking her shopping for hours on end. She would often be bedridden for a week or more and in incredible pain. On the day Mom passed (my birthday) about 2AM, sis decided she needed to come and get the "stuff" that Mom was going to give her in the will. She managed to show up 90 minutes after the funeral home came.

I wouldn't worry so much about getting your brother involved. The results probably would not be worth the effort. Do what you can without doing harm to yourself. Please find a caregiver support group, they may be able to help. They will also give you a chance to vent, as I did above, which can be very helpful.

Best of luck to you and your family.

[Maraya1969]

12. Thank you Tribalceltic. I guess this is more common than I knew.

[bettyellen]

14. super common- and "lousy self absorbed bullshit artist" is what they become to cover their asses

for their lack of action and callous behavior.
honestly, spare yourself the grief and ask for help from friends or support groups.
Not worth banging your head against the wall. Do what you have to do without consulting them because it will be easier in the end not to deal with the bullshit. Good luck and take care of yourself too.

[marzipanni]

13. Interesting video, and definitely worth trying!

Maybe your brother is a somewhat stubborn Luddite who is trying to avoid being influenced by the electronic age, and you should just humor him and print out an explanation and send it by snail mail.

What Barbtries said about her mom singing 'Happy Birthday' to her reminded me of a method of helping people who stutter by having them sing. Why not bring some music she knows, which would be a nice diversion anyway, and sing along with it. Maybe it would stimulate that part of her brain and she would join in a bit.

Have you heard about "My Stroke of Insight: A Brain Scientist's Personal Journey" by Jill Bolte Taylor? She is a neurological researcher who had a stroke and wrote a book about her recovery.
This link has an excerpt from the book, and a 46 minute 'Fresh Air' program from June 2008 with Terry Gross interviewing her-
http://www.npr.org/templates/story/story.php?storyId=91861432

[Maraya1969]

16. Thank you for that link. I will definitely download it or get a hold of it and read it. And yes

I know about the singing. Mom could sing right in the first week. That is from a different part of the brain. She doesn't like to now but when I was playing some kid's videos with little words we ended up playing BINGO the dog and she and I sang the whole thing!

[hopemountain]

15. glad you reached out to us on du

lots of us know where you are coming from. you are doing wonderful work with your mom. she can recover - i really believe this.

my hubby was a bass player aged 42 when he had a stroke. he was unable to speak or move the left side of his body. he was told he would never play bass again and that he had a 50/50 chance of living 6 months!

his 2nd day in icu, he scribbled a note to me to bring him his hand exercise ball. a few months later he told me with halting speech that he did not want to live if he could not play bass but that he was going to live and fight to regain his ability to speak and play his bass again - for us and our daughter.

and he did!

my sis, on the other hand had a stroke a couple of months earlier. she was the same age. she was able to regain her speech but not the use of the right side of her body.

they had different strokes - and a huge difference in "personal will".

[Maraya1969]

17. Thanks for your reply. When I went there today I waited until her boyfriend came in at 5PM and

showed him the technique that is shown in the video in my OP. Since I don't have any software I just read something to my mother very slowly and she is able to watch my lips and hear what I am saying and then speak very fluently a millisecond or so behind me. Today she showed me a Reader's Digest and I read the humor pages and we laughed. I think that is a great idea that she thought of reading funny things.

So when her boyfriend got there we did it together in front of him so he can do it with her. If I never get the software I think she will still benefit greatly now because her boyfriend is with her everyday and is very devoted to her, as am I.

And the brother? I'm not ready to send him a response. I'm still waiting to calm down.

[hopemountain]

24. sometimes a person must do the inner work

themselves. allow your brother time to figure it out for himself - you have more important things to do with your life than lead him to water when he doesn't want it. please take the anger at him and turn it into compassion to yourself and self nurture YOU.

interactions and sibling behavior toward one another is a very complicated thing that rears it's ugliness during times of duress. remember - he is his own man as you are your own woman, now. it is not your job to teach him anything. he is unwilling to help - for whatever reason and you do not deserve to be banging your head in frustration trying to make him do something he will not do - this is his choice. chances are not one bit of it has anything to do with you.

i agree - reach out to others to assist you. it is okay to do so - and your life and theirs will be much richer as participation in compassion is beautiful for anyone who participates.

my best to YOU - your mother's caregiver.

[Maraya1969]

25. Wow your post make me well up a little. Thank you so much.

I had gone over to the Buddhist group a little earlier and watched this great video someone had put up a long time ago. I posted something about how I had gotten myself into a lot of hatred and that the video helped me see things with compassion.

I think my brother has built great big thick walls around himself because of fear. I can't be mad at that.

[hopemountain]

26. namasté

yes, wow. the fear thing. many of us live from a fear base rather than from love. but, compassion and truth melt those walls.

[grasswire]

18. I suggest that you delete the name of the church.

We have stalkers here on DU who do often make trouble for DU members in the real world.

[Maraya1969]

21. I wish I read your post yesterday. But I did delete it. And no one knows the state.

His church is in a different state than where he is right now.

[davidpdx]

19. My father had a stroke in 1991 at the age of 43

about the same age I am now in fact. I did not see him until about year after as he was in California and I wasn't able to travel to see him. He went through some therapy, but only got minimal use back on his right side and his speech was heavily slurred. Eventually he moved up to Oregon the late 90's and I tried to help him as much as I could. He had several strokes over the years and in late May 2003 had one that put him in the hospital and he died about three weeks later.

I also was the only one who was willing and/or able take care of him. I hope your mom is able to get the best care possible.

[lululu]

20. does your Mom's problem

affect writing as well as speech? I just ask because I guess two different brain areas might be involved in those, and if writing is working, she would not be as frustrated as I imagine she is in communicating.

As for your brother, some people in families are responsible people, some are not. You have enough to handle without wasting effort trying to get your brother to shape up.

[Maraya1969]

22. Unfortunately if affected her writing and reading also. But she is reading some now. And she is

leaning to write again.

[The Second Stone]

23. Since the good reverand likes to read, send him a link to this thread

remind him that "what you do for the least of these, you do for me." Then tell him that you do in fact take it personally, and that you would like him to accept the fact that you take it personally and to stop telling you not to take it personally.

That said, I kind of empathize with him, I hate receiving information in other than written form as it is slow and often lacking in enough content. Like a sermon. I know everything that a Presbyterian minister can possibly say in a sermon. But I don't get up and leave, I sit through the usual 20 minute ritual anyway just to be polite. That is when I get up on a Sunday to go to church. The most hilarious part (now that I'm an adult) is the prayer of confession, which is basically a "we are lowly and awful worms who won't obey your will, please forgive us" that attacks the self-esteem of every member who isn't laughing inside. Yeah, I am technically a sinner, but not much of one. In fact, if I were a Catholic, the priest would dread the dullness of my specific confessions.

[MuseRider]

27. For your sanity

from my experience it is best to just get on with it.

I had 2 brothers at the time my mother got cancer. Both lived out of state. One came back when he could but was essentially no help. The other moved back about 2 months before she died and cause enumerable problems, mostly needing to be catered to. She was very ill and totally dependent on me for 4 years while my children were still in grade school. I finally just stopped and did it all myself and called them with updates periodically.

He may just not be able to handle this kind of thing with his mother. Who knows? He should be doing much more to help you but at some point you just gotta give up that frustration and resentment because it does not help you and he will not respond to is either.

It does help to be able to dump it out here though doesn't it? My mother was long gone before I came here but over the years I have dumped a few things here and got help.

I am sorry you are having to do this. It is hard as can be. It sounds like your mother may recover a lot? I sure hope so and I am very glad you are there to help her. Be well.