Riding Along

Marty has used a wheel chair for eight years.  Seeing “our” wheelchair for the first time was a surreal experience.  It sort of punctuated the strokes; the chair clarified the sea change in our lives.  I can remember looking at it and thinking how in the hell could this piece of equipment be a part of our lives.

Well, it was, it is, an everyday part, an integral part of our life.  It is the only way for Marty to move about, to be in different places and to see different things.  It is both the symbol of her freedom and her disabilities.

Using and being with someone in a wheelchair requires learning, it requires learning by doing, we have learned.  We have learned some doors are easier than others, doors with breeze ways and then another door, especially if you have to do a 90 degree turn suck.  Some places are better to go to than others, Chili’s is not good, Applebee’s on the other hand is great.  

Some people deal with the chair better than others.  Some seem to be afraid of the chair; some treat it like another piece of furniture.  The Grand-kids are often fascinated by it.   

There are definitely better ways to be with people in rolling chairs than others.  Here are five real tips for being with the wheelchair set from the mouth of my bride who rides:

When you are talking to someone confined to a wheelchair, sit down.  In most cases the person in the chair can’t get up to look you in our eye and you end up looking down on the person in the chair….and they zone out on whatever is in your nose.

Eye level, looking at someone in the eyes is a big deal.  Constantly looking up to the see faces and eyes of the people around you is tiresome and frankly a bit intimidating.  Think about it, you are sitting in a room of standing people, you feel out of place, you are literally looked down upon……try sitting and make eye contact with the people who are forced to sit.  

Don’t invade their space either.  Marty is stuck in her wheelchair and can’t really move it around when people get too close.  Nobody wants to get backed into a corner with no place to go.  Anyone cornered gets anxious.  If you close in on someone who can’t get away, someone who can’t protect their personal space, the person in the chair likely is not enjoying your company and they are likely thinking, “Hey, you with the breath, get out of my face.”  

I hear that from Marty all of the time, she probably won’t say that to you but you never know.

Try to sit in front of Marty so she can see you and make eye contact.  Her hearing hasn’t been any good since the 90’s (too much rock and roll) and she will communicate better with you and follow you better if she can see your face.  We all need non-verbal cues, people in wheel chairs do too and often, as is the case with Marty, she can’t really turn all the way to her side.  Sit where she can see you and you can see her face, that way when you make her smile by your very presence and witty retorts you will see her smile.  It’s very cool.

Ask if you are going to move the wheel chair.  If I do it or if one of her regular caregivers moves her we try to tell her in advance.  If you need to reposition her or any other wheel chair bound person, ask.  Marty will probably not say no but you never know.  Asking gives her the option and gives control to someone who craves but lacks real control over where she sits.

Then there is the hug….how do you hug someone in a wheel chair.  Obviously, the first thing is you ask.  You can do the side hug, wrap an arm around the shoulder and bend down, touch cheeks and do the old Hollywood kiss thing, smack, smack.  This is probably easiest.

Me, I like to stand at the front, straddle Marty’s legs and wrap both arms around her, but I like a good hug every now and then and I assume everyone else does too.  The big thing is a little touching every now and then does a body good….but gently.

It’s really kind of interesting how quickly Marty’s wheelchair has become fundamental part of our normal….it is always there.  It’s one of those things you grow to hate because of what it represents.   

It’s one of those things you grow to appreciate because of its functionality and simplicity.  I wish we didn’t need it.

Blew That Popsicle Stand

On day five of our Providence Hospital occupation our collective decided to accept the offer of Great and Wise and take ourselves home.  It was time.  After five days of IV antibiotics, fluids, breathing treatments, meds, and blood, we blew that Popsicle stand for the friendly confines of our home. 

Marty is much better, she is weak, she is tired, she is not all the way back but I am confident she will be soon.  Tonight she has a clean head, a clean body and her own clean bed; it’s been a good day.

When we went into the hospital last Thursday night Marty had a raging urinary tract infection.  Keep in mind the urinary tract is not just a hose, it’s a kidney, a bladder and has some names Great and Wise used that I can’t remember because I can’t pronounce them and if I can’t pronounce them I can’t visualize them and if I can’t visualize them I can’t remember the words….so there.

Suffice it to say, she was sick, 103 degree temp sick, a whole body sick.  Her white blood count was sky high and it affected her body in ways we don’t like.

We used fluids to flush the yuck out and eventually had to pull back on the fluids because she was getting too much and she started to really wheeze.  Once the fluids were minimized the wheezing improved; with the infection tamed by the miracle of modern drugs Marty started to feel better. 

Feeling better really started yesterday, Sunday.  You can always see it first in her eyes and the way she holds her head; if Marty holds her head up, looks around and makes eye contact with the people in the room I know we are headed in the right direction.  That started yesterday afternoon.  Until then she had worn the sick, I need to lay down in a hospital look.

We passed a couple of other blips yesterday and we talked with Great and Wise this morning when he came to Marty’s room this morning (Monday).  Yes, he comes to Marty’s room, in the hospital, doing rounds, healing people.  How cool is that?

He came in and said he didn’t see any reason we needed to stay unless we just felt too uneasy to leave.  Marty had her leaving face on even at 7:30 a.m...  We opted to leave.

The suddenness and the depth of this illness are troubling to me because it plays right into my obsessive anxiety ridden approach to watching my charge.  I hover, we all know I hover, and I watch Marty’s every movement to make sure it’s not odd or out of synch or different.  My hyper vigilance has now been reinforced with this latest illness.   

I’m probably going to be worse for a while, until I can get some time and distance between us and this most recent event.  It usually takes several weeks of normal life for me to relax my ears and get off point, to get past always being on edge waiting for disaster, looking for the next weird thing.

My fretting drives Marty a little nuts, it drives the caregivers bit nuts, and it really drives me crazy.  Tough shit, can’t help it, it’s why we were in the ER before her blood pressure crashed.

Hey, we’re home.  Marty is safe, she is as well as one can be given the circumstances of the last few days.  We are grateful because we know we are one infection away from very bad outcomes, but really, so is everyone else, we just practice more.  

Right now, today, tonight, we’re good.

She Got Sick Fast

She went from okay to really not okay in a matter of a few minutes.  The peaceful evening then went to eventful.  The suddenness was troublesome and that part will stay with me for a while.

Marty does this thing that’s really hard to describe.  She yawns, then stretches, then her body sort of contracts to one side and she kind of moans.  It’s like her body is out of her control for just a few seconds.  

I’ve seen this several times and every time I’ve seen her do this she’s been sick, fighting an infection and on the verge of sepsis. 

We were in the living room, she in her chair, me in mine and I heard her yawn and moan just a bit and I saw her body contract to one side.  I knew then, just from that small little thing, that out of control body movement, that our peaceful evening of The Big Bang Theory was done.

Marty had been fine all day.  We had done the regular things; there were no signs of anything.  We ate supper, she ate, sausage and pasta and peppers, it was really good.

When she started the whole body contracting thing I went and got Erica our caregiver thinking let’s do the bath give her something to drink, start antibiotics and let her go to bed.  We didn’t make the bed, or the drink, or the antibiotic.  Marty threw up, a bad sign and a clear ticket to Providence ER; we don’t do puking with Marty, or this funny body thing.

On the way to the ER, all  of about 5 minutes,  I’m thinking how do I explain to the registration desk and the triage nurse that I know my brittle, two times stroke wife is ER level sick.  How do I describe the whole body contracting, moaning, moving to one side in a way that helps them know that I, Marty’s Husband, know we are dealing with a really sick woman and not someone who has a stomach bug and is using the ER as their primary source of care?  

Maybe you embellish a bit?  Maybe you describe things in a way that accentuates the weirdness of the loss of control of her body…..I think…..let’s go with “maybe she’s having small seizures”. 

It worked and we got to triage in about 10 minutes and Marty took over from there…..her oxygen levels were really low…..that got us a priority ticket back to an ER room, that and a text to Great and Wise who generously alerted the charge nurse about us.

We got back to the ER room and I once again described Marty’s symptoms, first to the nurse and then to the ER doctor.  I’m generally an excellent communicator but Marty’s spasm thing is really hard to describe.  As I’m explaining Marty’s body starts to contract and pull to one side, just as I was trying to describe the symptoms. The doctor looked at Marty and said, “Yeah, it could be a seizure, but she doesn’t seem to lose consciousness.”

I said, “No, I really don’t think it’s a seizure, I think she has a bad infection.  I’ve seen her do this before and it’s always a sign of a bad infection.”

He looked at me with a little bit of skepticism and said he immediately order all of the appropriate tests and figure out what’s happening.

It took longer than usual because Marty was already dehydrated and they struggled to start an IV and get blood.  Eventually blood was drawn, urine obtained, tests were done and sure enough her urine lit up the test strips.  The doctor returned looked at the white count from the blood test and said, “You sure do know your wife.”

I think, “Duh”…..they don’t give doctorates of Marty to just anyone.

We moved to a room about 3 a.m. on Friday morning and they are treating the kidney infection with big time antibiotics.  Marty has been, Marty still is pretty sick.  In case you don’t know, urinary tract infections are bad and can make you very sick.  That’s where we are.

Marty has not made enough progress for us to be home for the Super Bowl.  She is not puking, she is not doing the weird stretching contracting thing but she is still running fever from time to time and doesn’t feel great.  Great and Wise won’t let us go yet.   Consequently, Super Bowl party in room 304.