http://www.one.org Dixie Peach: You asked, I answer

Cooler than the other side of the pillow.

Thursday, February 02, 2006

You asked, I answer

Here's the answers for the questions you asked about B and me.

Mollie: Friend, eh? Would this friend like to come babysit while I go to England and groove around?

Robin: Learning how to take care of B was on-the-job training. I watched his mom with all the things she did and I eventually took over all of his care. I did, however, find that there were easier, better ways to do things for him so I modified what I did to fit me and his needs. It wasn't scary per se but he has an old open scar from a pressure sore that went wild about 20 years ago and I was a bit intimidated about it's care. It can become easily infected if we're not careful about its care. It's all just a routine now.

Taking care of B is physically demanding. He's very tall - 6'4" tall - (or maybe I should say long since he's in a prone position most of the time) and while he weighs less than most men, especially men of that height, he's still a good 150 or 160 pounds and it's all dead weight. He's not able to be active in me lifting him to an upright position isn't so easy. While I don't worry about it, I do have to be careful not to let him slip from my grasp and drop him.

Rich: Dude, you have the questions! As you can read from my previous post, B was already a quadriplegic when I met him. When he was 24 he was drafted into the East German army and one day when he was at the swim hall he slipped by the side of the pool, fell into 1 meter of water and landed on his head. His spinal cord jumped out of place, became damaged and then popped back into place - his neck was never broken. His injury site is C5 and he is a quadriplegic which means all of his limbs are affected by the injury but it doesn't mean that he has absolutely no use of his limbs. His left arm is fairly useless and it's pretty well frozen in a flexed position. In his right arm he has use of his biceps but no use of his triceps so he's unable to raise his arms on his own but he can extend or flex his arm somewhat. His fingers are pretty well useless and on both hands the fingers curl into his hands. In general his health is very good, he's not had more than a pinhead sized pressure sore since I've taken over his care (Yay!).

What he does that upsets me the most is when I spend the entire day busy taking care of him and taking care of our home and the minute I sit down he says "Sorry, I need to pee.". He can't help it but I could scream when that happens. He doesn't use a catheter (much less chance of bladder and kidney infections which can be deadly to a quad) and instead he pees in a urine bottle with my assistance (I hold the bottle and push manually on his bladder and he pees).

What make me love him most is knowing that to him I am the most beautiful woman in the world, that he loves me without end and that he truly appreciates everything I do for him.

As for the other questions - No, he's not a Werder Bremen fan. He's a die hard Bayern-München fan and has been for the past thirty or so years. Yes, he can communicate with me - his only injury was to his spinal cord and he didn't sustain any sort of brain injury. He could technically communicate with y'all as well but he's not the sort to blog but if you wanted to ask him something in an email, he'd answer it.

And I have to say that while I miss my family and friends terribly, I have never regretted moving to Germany and I have never regretted marrying B. He is absolutely the love of my life.

pkb: Are you kidding? B's a fabulous kisser! But you already suspected that, didn't you?

Ashley: B said for you to come visit us. He'll look crosseyed at your lipring but he'll gladly admire your bird tattoos.

Mr. Fabulous: Answered!

Lisa: I guess these entries could become a sort of FAQ about myself and B. I've been asked for years why I don't write a book about our lives but honestly I never thought it would be all that interesting. Maybe that's just because my life seems ordinary to me but maybe it's extraordinary to others.

cncz: Sometimes I think my husband is less German than other Germans but maybe I've just trained him to be that way. He's not a sarcastic person but he can be cynical and that sort of bugs me.

And thank God for German health insurance. I can say that we get so much less crap about getting the stuff to care for him than we'd get in the US. In the States the quality and accessability of the things needed to care for a quad can vary depending on the person's insurance and their own wealth. Jumping through hoops for insurance companies in order to get needed equipment is far too common and I know of quads that had to go through hell just to get something as basic as a decent shower chair. While we have to pay for some things on our own, most is covered by our insurance. He has two wheelchairs - one is a push chair that's at least 12 years old and is dead uncomfortable for him to sit in...he seldom uses it but we have it for instances when his electric wheelchair won't do...and he's got a big electric wheelchair. B's a tall man so his chair is bigger than most to accomodate his endless legs. That chair is about 10 years old and it won't be replaced unless it breaks and can't be repaired. His bed is a fairly standard electric hospital type bed but it's wooded so it's not as hospital-y looking. It gets replaced every 4-5 years but we buy a different mattress than what the insurance company provides because what they pay for is crap. Other equipment we use would include pillows to help prevent pressure sores, bandages and disinfection drops for the previously mentioned pressure sore scar that has to be dressed daily and he takes a medication to prevent limb spasms. It's actually a mild tranquilizer but on him is words as an anti-spasm medication. The only other medication he takes is magnesium which also helps muscle cramps and spasms.

jvs: He thinks my love of peaches is fine. He's allergic to raw peaches so he figures he's leaving more in the world for me to enjoy. Ice cream? His favorite is vanilla. Mine is chocolate. We're so very ebony and ivory. And he'd pick Julie Andrews because I doubt he knows who Julie Christie is...that is until I said "The chick in Dr. Zhivago.".

Marsha: Since B has limited muscle control in his neck, he can't sit up but for a certain amount of time. If he's sitting still he can last longer because he can rest his head on a headrest (or the back of his bed if he's sitting upright in bed) but if he's rolling down the street his head wobbles a bit and it strains his neck. Some quads, like B, get a sort of fatigue from sitting upright for a long time. He'll begin to shake and he'll begin to sweat - it's all just a part of the messed up physiology that occurs from a spinal cord injury. Else he's not in any sort of pain and doesn't take any pain medications. He does have some feeling below his injury site but it's not always the same sort of feeling we may experience. He can tell if I'm pushing on his leg but he couldn't feel it if I stuck a needle in it. He can tell if his stomach is upset - he can feel bloated or overly full. If he's not laying right in bed or sitting right (okay, I'll say it...if I've somehow got his testicles squished), he'll sweat and his legs will spasm. He's got some feeling in his hands and some on his fingertips but it varies. The rule is, if he's sweating and shaking, check everything to make sure he's not sitting or laying wrong.

I can lift B myself to an upright postion to put a t-shirt on him or to straighted his sheets or whatever but it's impossible for me to lift his body completely except for maybe an inch off the mattress. There are mechanical lifts available and we use to have one but it doesn't work well in conjunction with his wheelchair and so we got rid of it. To get him in his wheelchair I have to rely on one strong man to lift him and sit him in his wheelchair or I can do it with the assistance of another person - usually his mother because that's usually the only person available. I lift him under his arms, she lifts him under his legs and we get him off the bed and into his chair. It's not easy and I firmly believe we only succeed because the angels around us help lift. Putting him back into bed is done the same way but I can do it by myself in an emergency using a slightly different method that only works to get him in bed.

Okay...anything else? If you have more questions, leave me a comment!

9Comments:

Anonymous TitanKT said...

I was going to ask about how much control and feeling he has in the lower parts of his body... mainly I was wondering if he could breathe on his own, but I gather from the descriptions I've read so far that he can.

I also wondered about the needing to use the bathroom sensation, I guess he just feels the pressure from his bladder being full, huh?

You said he can kind of use one of his arms... is that how he eats or do you feed him? Is that how he uses his comp or does he have voice-activated programs like Mikki?

Does he get bored being inside and/or in bed all the time?

Also, this may be as indelicate a question as the sex question, which I'm not going to ask by the way simply because I don't need to know and it's not the sort of thing I'd ask anyone. I realize that the health care system in Germany is almost certainly very different from ours, so I assume that his medical needs are not too big a problem. What I am wondering is how do the two of you maintain a livelihood. Does B work?

You're great to answer all these questions and I agree that it's very interesting. Not just from the standpoint of learning new things about people with disabilities, but YOU are a good writer and have made all your information easy to read and interesting.

And what better story was there, ever, then how you went to Germany to be with him and the two of you are so in love. That's very inspiring and uplifting. I'm so happy for both of you. You're a very brave woman.

7:55 AM  
Blogger christina said...

Wow, thanks for answering all those questions, Dixie. Nice to know a little more about you and B and your daily routine.

9:30 AM  
Blogger Kirsti said...

Thank you for taking the time to answer all these. You really could write a book - or a booklet at least - on this practical, day to day side of things.

4:50 PM  
Blogger Dixie said...

Katy, he does feel in a way a sort of pressure when he has to pee. It's very dangerous if he holds it too long - not only would it back up and possibly cause a bladder or kidney infection, it causes his blood pressure to run dangerously high and conceivably could cause a stroke.

I'm not sure exactly what you mean about the health care systems being different. Medical care itself is comparable but health insurance here is more comprehensive and there are no spending caps unlike in the US. In the course of the past 22 years of paralysis he's probably gone through hundreds of thousands of dollars worth of health care.

B can use his right arm in limited circumstances. When he needs to do something with his right hand he wears a leather wrist stabilizer. His hand sort of hooks over the joystick of his wheelchair for him to control it on his own and he's able to eat some things by using a spoon that hooks over his hand. B uses a computer by using a homemade device thought up by his dad - an old bicycle grip has been stuffed with cotton and it in I have a stub of a pencil sticking out. A plastic clip is atttached with tape and it hooks over his hand and he uses the eraser end of the pencil to tap keys on the keyboard and I have modified a mouse by using double sided sticky tape pads to make a little platform of sorts for him to push the mouse with the pencil stub. We call the pencil stub contraption his finger.

He does get tired of being indoors and in bed all the time, especially in winter. He can't control his body temperature very well and becomes very cold very easily so going out in winter is only when he absolutely has to. Our apartment is too small for him to get around easily and I can't get him in his chair by myself anyway so he stays in bed (his bed is in our livingroom) the rest of the time. His last outing for the season is ususally late September or early October and he doesn't usually get out again until April or May, depending on the weather. Yeah, he gets tired of indoors but he never, ever complains.

B is considered by the health insurance company and the government to be in the catagory of needing the most care. He's unable to use the bathroom alone, cannot wash himself and can only feed himself in limited situation (only when he can sit upright and eat food with a spoon). Therefore his care catagory is Level III, the highest and most difficult threshold to meet. B cannot work and he has the German equal to going on Social Security on disability. He's also given a set amount each month to pay for care assistance - sort of like a paycheck for me. This is cheaper than the government/health insurance paying for him to be in a nursing home - money paid to a nursing home for his care would be about double what we get now. Our other source of income would be an insurance settlement and investment income.

10:02 PM  
Anonymous titankt said...

Good to know, thanks Dixie. I guess I assumed Germany's health care system is similar to Canada's, which is the only other foreign health care system I know anything at all about. And I guess maybe it's not the same. But anyway, you answered my questions, so thanks. I was interested to know all that.

I'm bummed for him that he can't get out more. I'm sure he must be SO appreciative that you go out and bring the world in to him. And the sheer volume of content on the internet and TV must alleviate his boredom and cabin fever. I'm glad of that for him, too. Think how much more confining it would've been to be paralyzed before the internet!

12:53 AM  
Blogger Mr. Fabulous said...

Yours is a great love story. Thank you so much for sharing!

7:44 AM  
Blogger still life said...

These or some of the best answers that I could have imagined Dixie. I have read this post many times now and B and I are quite different in levels however we still have a lot of common ground.
But I will e-mail these to you as these questions are geared more for B and I don't think that your readers are interested with me personally so I will e-mail you and let you know what my conditions are. It's so very interesting to me to have a snapshot of another quad. Someone like me... I like it.

Thank you for this and thank you to B because he was open to sharing very private matters.

9:10 AM  
Anonymous ashley said...

i'm leavin on a jet plane now. rustle me up some pb, naner and mayo sandwiches. :) i'll even take the lip ring out for b.

10:20 AM  
Blogger Reighnie said...

I didn't know that magnesium helps cramps and spasms. Sean's on Baclofen and propanthelin. I'll have to talk to him about that.

So it's easier to get stuff in Germany? Sean's supposed to be getting a new chair in a few weeks and he's still waiting for a toilet chair. He has a superpubic catheter and he always has some type of low grade infection going on. He had a UTI go bad last October. It went septic and he almost died. But he has no control over his bladder.

I wish his mother would have been as helpful. She was caring for him before I came along and she would leave him with whoever would say yes.

The last time she left, she didn't even tell us, she just up and left for over a month. Didn't even call him to wish him Happy Birthday. I had to quit my job and Sean had to explain everything to me and that's how I learned how to care for him.

We moved from California to New Mexico, when Sean sold his house, she took half his money. He doesn't speak to her anymore. It's really sad. But she was an awful mother.

New Mexico has been a little easier to get equipment and other medical items from than california.

Sean has a hoyer lift. His brother used to lift him and that was whenever he decided he had time to come. I learned how to use the hoyer and it's so much easier. I can do it by myself. It's not electric. I can take a picture of it and post it on my blog or something if you are interested?

It's a lifesaver. I don't need to depend on anyone. We even take it to his doctor's appointments and surgeries. It fits right in the van.

I can totally relate to the asking for something as soon as you sit down. It seems Sean has this uncanny ability to time it to the exact second I sit down or lay down. It drives me NUTS! I try not to say anything.

But I love him dearly and get up anyway. Does your guy apologize a lot? Mine does, sometimes it's ok, but most of the time there's nothing to apologize for.

Anyway, my question is this... Do you guys have a problem with autonomic dysreflexia raising the blood pressure and if so, what meds do you use? I know you said a mild tranquilizer, but is that strictly just for spasms? I know these things build up on each other.

Oh, and good job with the sore. I can totally read your pride in your post. I'm nursing a sore right now on Sean's elbow and I can understand what a big deal it is to keep things all good when it comes to sores. It's like a huge victory!

11:23 PM  

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