Miracle Story #17 (Part 3 of 3)
Amy:
“Russ has fallen through every crack in the system.
I called the Kansas Department of Aging and Disability and even though disability is in their name, he isn’t old enough.
He doesn’t qualify for that.
So I thought, ‘Okay, Meals on Wheels is really good, because at least someone will be looking at him. At noon I’ll know he’s okay.'
But they were like, “He’s not old enough to have Meals on Wheels.”
Why would there be an age requirement?
If he needs a meal and I’m willing to fork out six dollars a day, then what does it matter?
But I have it sorted out in Valley now. They work for a different company than the Wichita company.
Because we live in Valley Center, I can’t stick him on a special needs bus to go to PT, OT and speech.
And PT, OT and speech could never coordinate the appointments so that they would be back to back so that we'd only be there like two days a week.
I have to work. I don’t have time to drive across town for forty-five minutes, five days a week, because they can’t sort out their schedule.
So I got really disgusted with the medical field.
We waited four months to see the next neurologist we saw, and paid the guy three hundred dollars to say, “Well, keep him social and active.”
“Seriously, that’s your professional opinion?”
They had him on a whole bunch of meds but we’ve weaned him off many of them.
They told me he had a blood clot and that it would be resolved in three to six months. So at the end of six months I took him off of that med.
When we brought him home, we had a pill sorter and I organized it and had to write everything down. He was on blood pressure meds, muscle relaxers, all kinds of stuff.
And I just started doing a bunch of research.
We had a chiropractor. I can say that chiropractic care makes a big difference. We’re really big believers that the body will heal itself.
His blood clot did come back so he is on coumadin again though.”
Russ:
“You name it, I was on it. I always teased her about my tackle box.”
Amy:
“So now he takes an allergy pill. He takes a nasal steroid. He takes coumadin.”
Russ:
“The asthma is pretty well controlled now since I’ve had surgery. I had polyps in my nose.”
Amy:
“They keep coming back. This is our third surgery for that. We’re going to try a different drug for that.
My biggest frustration, the second time we were in ICU, was that they just kept putting him on an antibiotic and then they’d put him on a steroid. Then he’d get off of them and then he was back to crap in two weeks.
And then they’d put him on them again.
Nobody was figuring out what was going on. And so, the second time we were in the hospital I just put my foot down.
“Something’s wrong with his sinuses and before we leave this hospital, we need to do something."
His sinuses were just so packed full of yuck. They just couldn’t get the infection out.
And when you’re asthmatic, if you have an infection in your body, then your asthma flares up.
So it’s just a vicious cycle.
I took him to an allergist and he wanted to do allergy shots again. We had done allergy shots for three years. I didn’t think there was any point in doing that.
So then they started him on a shot that was like $3,000 a month.
So we did that for three months but there wasn’t any significant improvement and I didn’t see the logic behind continuing to do that. There were all kinds of risk associated with it also.
So we did surgery again toward the end of the year.”
Russ:
“Polyps come back.”
Amy:
“Russ gets two thousand dollars a month from disability from the government.
Apparently in that world, it’s a landslide of money.
If you make over seven hundred and forty-nine dollars I believe it is, it knocks you out of Medicaid world. So you can get Medicaid but you have a spend down.
You have to have $10,000 worth of medical bills that you pay for, before they’ll pick up.
But he doesn’t really have a whole lot of medical needs.
But if you don’t qualify for Medicaid, then you don’t qualify for Starkey. You don’t qualify for the rehab programs that could actually get you back out into the world.
Our goal is to get him back to work and functioning.
It’s what he wants.
He grew up in a house where the man goes to work and the woman stays home. I always worked from home or did something, but he came home to a warm meal, a warm house, and some chaos going on from our kids. (laughs)
So because he gets too much for disability, it takes him out of qualification for Medicaid and all those programs that would really help him get back out there because they’re tied in to being on Medicaid.
We ended up doing Cobra. He could only do that for eighteen months.
I spent a year and a half with no insurance after the accident. And once I could pick up New York Life’s insurance, he went on insurance with me and now it’s $500 a month for both of us instead of $450 a month for just him.
Cobra was a lot cheaper than if we did Obamacare.
With Obamacare, for just the most basic coverage, which was hardly anything at all, was like $142 and then the next step up was over $500.
That has been my biggest frustration.
You call places and they say, “No, we can’t help you.”
“What do you mean you can’t help me? I have someone that obviously needs help. You want me to keep him at home, which is where he wants to be, but you won’t give me any help unless I shove him in a nursing home.”
And that’s the truth.
My biggest concern is that he has no short term memory. Around the house he’s good enough now, but we don’t let him cook.
My biggest fear in the beginning was that if I left him at home and something happened, because I’m his legal guardian, would I be in trouble?
Because I’m trying to provide for all of us.
I paid someone for a few months to come in and stay with him for two days a week, but that was $700.
We’re not in a position to do that right now. My career is still really new.
How do you discount someone because they paid into disability and they got what they paid in, but now you’re going to tell them, “Oh, sorry.”
Had I known that, I would have never filed for his disability. I would have done all of the medical, because then they would pay for PT, OT, speech…the therapies that he does need.
It’s a train wreck.”
**What would help you the absolute most right now?**
Amy:
“What do you think old man?”
Russ:
“That’s hard to say.”
Amy:
“We’re broke. My first instinct would be money. But the reality of the fact is, money is money.
And it’s going to come and it’s going to go. Things have been tight but we haven’t missed any meals.
And we’re making it.
I guess prayers.”
Russ:
“I wish my mind would come back, like it was. I don’t think it ever will though.”
Amy:
“We’re working on it.”
Russ:
“I miss going to work.
I miss going to work and providing for the family. I always did that.
Now I feel like she’s doing all the work.
I feel horrible about that.” (crying)
I’ve been staying at home alone the last couple of weeks.
At first I didn’t like it, but the last couple days have been pretty good. I kind of enjoy the peace and quiet. I just need to work out and stretch more.
I watch TV.
I watch the velocity channel, car shows.
I have a bunch of die cast cars at my dad’s house. I love cars.
I can follow and communicate what’s on, but I have trouble remembering the next day what I watched.”
Amy:
“We watch Frasier on Netflix and I can go run around the house and do something, and then turn the episode back to catch up, and he won’t remember he already watched it. (laughs)
He laughs more.
That’s a change.
I was worried that his personality would change.
Probably the funniest thing that happened was…a day or two after he de-intubated himself, my best friend had gone up to the hospital to visit, and of course he didn’t have any drawers on or anything.
Well he was kicking his legs and flailing around and acting a fool, and I said, “You’d better put your legs down or you’re going to show Michelle your junk.”
It was the first time he had looked at me, and he smirked.
I just thought, ‘Russel is still in there.’ (laughs)
Russ:
“I laugh all the time now.”
Amy:
“You know, when you deal with a brain injury like this, it can be so hard personality-wise.
He’s a little more OCD now.”
Russ:
“Yeah, way more. Things have to be in place.”
Amy:
“The dishes are always done now.”
Russ:
“My toolboxes have to be a special way. I have one toolbox that is dedicated to mechanics, and one toward the paint side of things. It has all my paint supplies in one box.”
Amy:
“We’ve just had to learn how to adapt.
The hardest thing that I’ve dealt with lately is giving him full reign to do the work now.
Like I said, it’s his miracle. He has to do the work.
Something as simple as drying his back is hard. And you don’t think about it.
But think about it, you have to flip a towel and you have to be able to maneuver it behind you.
This morning he was like, “Will you dry my back?”
“Well what do you do if I’m not here?”
“I lay a towel on the bed and I go lay on the towel on the bed.”
And I was like, “Well you figured it out!”
We labeled all the cabinets so when he started learning how to do the dishes…
The dresser is labeled so when he started doing laundry he would know where things go.
It’s giving him the freedom and responsibility to do stuff.”
Russ:
“Andi, her oldest, says to her all the time, “You’re so mean.”
We just laugh all the time.”
Amy:
“By the end of the day and he’s asked you the same thing fifty times it’s like, “Honey, I’m going to choke you.” (laughs)
Russ:
“You’ve got to have a sense of humor.”
Amy:
“I would change awareness. I would change people’s awareness.
There are people in the grocery store that avoid us.
And that’s sad.
The fact that his boys won’t come over and see him because he’s different….I can understand that when he was in rehab, because it was bad. It was really, really bad.
But Russ is Russ again.
He just has some physical changes.
I don’t understand that.
They’re seventeen and fourteen. And they live three blocks away.”
Russ:
“I see Elliot. He’s one of the boys’ good friends.”
Amy:
“It’s just sad.”
Russ:
“I keep telling her…eventually the boys will come back.”
**If you could tell the boys anything, in the chance that they might read this story, what would you tell them?**
“I love them very much.
I know it’s hard for them.
I’d like to see them more.
I miss them.”
(crying)
Amy:
“It’s hard because everybody’s life does go on.
Last week I finally went back to counseling. The hardest part is what we’ve been dealing with lately.
I have to go back to work and focus on work.
I have to.
I don’t have a choice anymore. We’re in a do or die situation.
If I leave him here and something happens, there’s going to be so much guilt.
But I can’t afford for services to come in.
They say he doesn’t have a medical condition because he does not need a nurse to come look at him.
I said, “No short term memory?”
“That’s not a medical condition.”
“But this is caused from a medical condition.”
An Alzheimer patient has a medical need.
Russ is fairly healthy, other than a few deficiencies that he still has.
Russ:
“The whole thing is so frustrating.”
Amy:
“It is so hard to help somebody and have the whole system just buck you.
And I’ve said to people, “So you want me to put him in a nursing home?”
Their theory is that if I put him in a nursing home, they’re going to take his disability check. But that’s not going to cover what his expenses are going to be.
I just want some help to keep him at home.
I don’t want to have to put him away from his family and away from everything.
We are his whole world…my kids, my family.
My brother took him on vacation last year. They went on a man trip.”
Russ:
“That was fun.
We went to New Mexico.
It was a blast.”
Amy:
“Never in a million years when I brought him home did I think, ‘I’m going to do this all by myself.’
People say, “Well ask for help.”
They’ll help you the first time.
But when you say, “Hey can you watch him every Thursday night so I can work?”
That’s a different thing.
He goes to his brothers, like I said.
And they have helped us.
They’re fixing my car right now and they’ve kept the truck running.
We’ve had to borrow some money just to keep afloat.
It’s scary.
I left yesterday morning and thought, ‘You know God, I can’t be here, so you’re going to have to do it.’
And there’s times that I should’ve really worried...
And I just keep telling God, “Okay, you’ve got this. I don’t have time to worry about this, you’re just going to have to handle it.”
And either the money has shown up…or somebody has taken one of the kids to practice or…
The boys are teenagers. They want to do teenager things.
I have an eighteen year old here. She works two jobs and is in school full time.
I can’t just say, “Can your life stop today because I need you to help me with Russ?”
It’s not their responsibility, you know?
Russ:
“The kids do help out. They’re really good to me.”
Amy:
“We have a friend that has a daughter who has special needs and my kids have always been around her.
So they’ve seen that this is what love is.
I can’t promise you that I can do this forever.
I can’t.
But I know I got him a lot further than anyone else could get him.
In theory, he should probably go to an assisted living place because they would have activities for him to do. But he and I talked and he doesn’t want to do that.
He wants to be with us.
The system is broken. It’s very, very broken.
That’s what I want...awareness.
This sounds really selfish on my part, but they want me to keep him here for free and not help me verses put him in a home.
And if he was in a home the state would have to spend at least $4,000, plus all of his therapies and everything else.
I don’t understand that.
Why is he getting penalized, because he paid into the system?
That’s what disability was meant for.
Disability wasn’t supposed to be someone’s retirement plan.
It was supposed to take care of disabled people and widows after their husbands died, if you really go back and look at the history of what social security was meant for. At the time forty-three people paid into it for every one person that needed it.
Now it’s three to one.
I’ll never forget when I took him into the disability place for the first appointment.
When we went in there it was like everyone looked at us like, ‘He’s the type of person that should be here.’
Not the whole waiting room full of people that for whatever reason, aren’t working, don’t want to work…driving in in Mercedes...
We’re driving around in a piece of junk truck that just makes it.
I do need to go be an activist.
But I don’t have time right now.
I’m trying to keep us afloat.
They have a Brain Injury Association here in Kansas. They have meetings twice a month, one at each rehab hospital.
We went to one of those.
Russ hated it.”
Russ:
“They make you rehash.
It seemed like all you did was rehash your story over and over. Because people have shown up late and then it disrupts the whole meeting. We never did do anything as far as accomplishing anything really.”
Amy:
“They’re based out of Kansas City. The only thing I can see that they have is a meeting once a year for a day, with speakers.
I think I could learn stuff if I could get there.
I have never talked to so many agencies that say, “I’m sorry, your situation is bad but I can’t help you.”
“Can you refer me to someone? Who do you know?”
“Well call the United Way.”
“I’ve already talked to them.”
“Well call such-and-such.”
“I’ve already talked to them too.”
It’s so frustrating.
The Independent Living Center, I love them, but they actually turned us down at first.
But then I got a hold of someone else that got us help.
Our next step is to get him a job, to get him into vocational rehab.
The bus will come here and pick him up, take him to work, and bring him back.
It’s totally independent.
They’re trying to make him independent.
We’re just trying to get through it. And all we know to do is just one day at a time.
And God has given me strength.
That’s where I see God, the strength....when I’m ready to just give up.
“God you’re really going to have to take this one.”
Russ:
“I get impatient. It’s one thing I wish I could work on.
Before this, I was so patient with everybody.”
Amy:
“Brain injuries are very selfish.
And he’s not a selfish person at all but they can just make you selfish.
I remember one day recently he said, “Can you get me a spoon?”
I said, “Get your own spoon. You can get up and get it. I’m not getting it.”
Russ:
“I guess I can do that. (laughs)
There’s times we just sit down and cry.
Just sit down and cry together.”
Amy:
“Tuesday he said, “Are we ever going to get married?”
My lawyer has advised me not to because if there’s any other…
Russ’s rehab was $500,000 a month. If anything major happens like that, the kids and I would never recover from it financially...if we got married.
That’s sad.”
Russ:
“It is what it is. One of these days…
What do we say…we’ll get married on the beach..”
Amy:
“Yep. My daughter might have to push a wheelchair on the beach…that would be real bad.” (laughs)
Russ:
“Before, I didn’t really have much faith.
Now I do.
I’d like to go to church more often. Where we go now, I like that church a lot.
It’s so much different from all the other ones.
I didn’t go to church at all when I was a kid. We’d go to church on Christmas.
That’s about it.”
Amy:
“I think it’s opened my eyes more to God’s grace.
Just to be able to see that I don’t have to be perfect.
I don’t have to do this perfect.
It doesn’t matter if I have a crappy day one day and the next…or a crappy hour... (laughs)
It will fluctuate all day sometimes.
You can start over and you can make a choice to choose.”
Russ:
“Choose to sit and sulk...or get up and do it.”
Amy:
“It’s good that we were really good friends when this happened.
A lot of couples don’t make it through this.
There was a guy in rehab whose wife divorced him, cleaned his 401k out.
And left him.
And that happens a lot.”
Russ:
“Left him for his best friend too. Really screwed up.”
Amy:
“I don’t know, I’d say our biggest thing is just hope.
Just hope for the future, because we live in such an uncertain world.
You hope you can do it every day.
You hope he makes the choices that he needs to make all day.
Just hope.”
Russ:
“I hope I get back to my old self. I don’t know if I ever will but that’s what’s so scary.”
Amy:
“Well your mind is there...other than your short-term memory.
True?”
Russ:
“True. I was always a little goofy.”
(laughs)
©2017 by One Million Miracles. All Rights Reserved.
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We are Russ and Amy, and we live in Valley Center, Kansas. In the midst of recovery from an anoxic brain injury, I AM Miracle Story #17.