Bipolar Support

(Cross posted to Bipolar Support and Living With A Purple Dog)

I haven't updated this blog since Ryan passed, but it's time to come back and tell a story of events that only Ryan could orchestrate. This is a story where, if you aren't familiar with Ryan and his life, might sound like random events. We know better.

Ryan and his older brother, we'll call him Greg, were only 19 months apart, and were very close. They did everything together. After Ryan passed, on the anniversary of his death, Greg decided to honor Ryan by stepping outside his comfort zone and doing something he wouldn't otherwise do. Ryan was a fearless free spirit, and it was a fitting tribute. One year he went skydiving, another year he ate Chinese food. Then the third year...

On the third anniversary of Ryan's death, Greg went horseback riding. He'd been on trail horses at camp, but never wind-in-his-hair, exhilarating riding. It was the great experience he hoped for. Another fitting tribute. The next day he was sore - that's to be expected, right? Except it didn't go away. After several days he decided to get it checked out. His doctor got somber and told him to run, not walk, to the hospital. There they diagnosed him with testicular cancer. They scheduled him for surgery the next day. Not to minimize any cancer, but testicular cancer caught early is rarely life-threatening. A lot depends on when it's caught, and the particular situation.

Taking a slight detour here. Testicular cancer usually involves removal of the affected testicle, and after a period of time, fertility returns to a normal level. But we encouraged him to freeze some sperm before the surgery, and he said they'd consider it. Well, they did. Can you imagine a young couple trying to produce sperm after being diagnosed with cancer, knowing surgery was early the next day? My perverse sense of humor makes me chuckle every time I think about it.

Surgery went well, but after a CT scan they scheduled him for aggressive chemo. It was miserable, but successful. Except the chemo left him sterile.

Over the next year or so he underwent numerous examinations and scans, which eventually led to a clean bill of health - he was in remission, and they had no reason to suspect the cancer would return.

End of part one - if it wasn't for honoring his late brother, it's possible Greg's cancer wouldn't have been discovered soon enough for the positive outcome he received. I truly believe Ryan orchestrated this. And since he went that far, watch for part 2 of this post...

My wife used to say that our kids were a stable of thoroughbreds. We had 4 magnificent stallions and a unicorn. The unicorn was beautiful, magical, and enhanced the lives of anyone crossing his path. He was creative and brilliant. He taught us about true forgiveness. He taught us to love unconditionally and not to judge. He taught us to laugh and have fun under any circumstance. Over the years we tried, foolishly, to turn the unicorn into a stallion. The unicorn tried valiantly to become a stallion. We all came to realize that a unicorn is magic, and can’t be kept forever. Kyle was our unicorn, and we were blessed to have him 24 years.

Kyle's (Ryan to us) memorial service was yesterday. There were hundreds of people - so many people they had to set up folding chairs in the hallway outside the door. It was an awe-inspiring testament to the power of his life, and the impact he made on so many people's lives. He packed more living in his 24 years than most people would in 10 lifetimes. The service was beautiful. Kyle was a very spiritual person, and had a couple scripture verses on his wall they incorporated into the service. We sang his favorite hymn - "Life Flows On In Endless Song" at the end. There was a guitarist playing 2 songs by his favorite band, Five Iron Frenzy, "Every New Day" and "If You Could See Me Now". It was wonderful.

Now comes the inevitable soul-searching.

I'm wondering if it was a mistake to medicate Kyle. My wife says absolutely not, it was the right thing to do. His most debilitating symptom prior to treatment was his all or nothing perfectionism that manifested itself in terrible outbursts of temper. Not directed at other people, but at himself. It was so painful to watch. His treatment did take care of that, and we were all thankful.

But as things went on, as so often happens, one med begets another, and before long he has a laundry list of medication. He was medicated to the point he wasn't experiencing life at all. His last 2 weeks seemed to be good weeks for him, but he still seemed over-medicated.

His doctors and care workers were exceptional. This was NOT a case where they callously over-medicated. But Kyle would ask for more and more. He couldn't sleep, or his anxiety was particularly bad, and so forth. The doctors, truly interested in his comfort, would try to help him. This is how he ended up with such a large amount of daily meds.

His death appears to be a freak accident. He fell face first into a coffee table in his room. The TV cord was exposed, and the TV was on the ground. We are guessing he tripped on the TV cord, and fell into the table. This accident could have happened with or without medication or alcohol, so I'm not blaming his death on that.

So why am I questioning if medication was the right choice? It comes down to a quality of life issue. Early in his treatment, when the Lamictal started to balance him and took away his inward-turned angry outbursts it was a very good thing. As things continued, and they added more and more medication, he lost the ability to do many things. Towards the end he was having a hard time leaving the house or meeting anyone. The disabilities he'd acquired were as debilitating as the one's he'd fixed. Having the benefit of hindsight I'm wishing he could have lived his last few months in a different way. Or do I? Those days were very memorable to my daughters, who would hang out and play games with him every day this summer. The old Kyle would have been gone half of the time, and we'd have been worried constantly.

I will wrestle with this the rest of my life.

If anyone else is in the same boat, take your child for who they are. My wife checked on Kyle every day. She hugged him every day, and told him she loved him every day of his life. Whether he was in treatment or not, or properly medicated or not, is meaningless. It likely didn't impact when he died. What did matter were the people and opportunities that made him feel good about himself. The opportunities his family had to make him feel loved and important. That we can look back and know we hugged and told him we loved him. When it's over, unconditional love is all that matters.

Our son Kyle has left us, he was killed today in an accident in our home. He was 24 years old.

While Kyle suffered terribly at times, he also lived life to the fullest, and loved more deeply than words could describe. My wife used to say, "he was a unicorn in a stable of thoroughbreds."

I'm going to miss you, kid.

I was pretty negative on my recent post. Kyle is trying, he really is. He's just fighting demons stronger than any I've known. I don't want to give the impression he's not trying. He'll get a handle on those demons long enough to make some positive changes, I know he will.

Jon (GJ) here with a yearly update.

Accomplishments:
We got Kyle assistance. Got his hospital bills paid. Got him food stamps (which he's trading for drugs). Got him medical and psychiatric care including prescription care. He is taking Lamictal, Risperdal, and another I'm not familiar with for anxiety. We got his first Disability rejection (which was expected, nobody makes it on the first round.)

Events:
He spent a week in the psych ward at a hospital. He didn't get along well with the exprience. When he got out it was 3 or 4 days before he started drinking and using drugs again.

Currently:
He's drunk almost always. He's high almost constantly. He is supposed to go tomorrow to the day program at a local agency specializing in mental health. He said he was going, but he disappeared an hour or so ago. Door slammed, no more Kyle. Hopefully he's back at 8:00 AM.

His medication has helped significantly in some ways. He hasn't exploded at all. But he still can't sleep. And he still drinks and gets high. As much as he drinks it's just a matter of time until we'll lose him. Without a change in direction soon, It's pretty much inevitable.

So things are not as bad in some ways, and much worse in others. We check on him every morning to make sure he's still alive. Things are very scary right now.

Hopefully it's not a year until our next update.

It's been almost a year since the last update, but things have been fairly quiet.

Kyle has just gotten a job, and we're very proud of him. He's working for a major retailer, seasonal help, but he's hoping they'll keep him on after the holidays. He passed his drug test and his background test, and that made him feel good. That made Karen and I feel good, also. He says he's not drinking or using drugs, and I believe him.

His girlfriend moved with some friends to a house in a suburb about 20 minutes away. Kyle's job is close to her house. He doesn't come home much these days, I'm not sure if that's good or bad, but he's spending most of his time at her house.

He's still having issues with the aftermath of his attack a year and a half ago. He's consulted a few attorneys about it, but they won't take the case. He's still filled with rage, as the kid who attacked him is bragging that Kyle can't touch him. I can't imagine carrying around that hate and rage.

Kyle is still not taking meds, it's the same catch-22. He can't get the meds without insurance, and he can't be stable enough to hold the job that provides insurance without the meds. This brings up a question for everyone. I found a web site that sells meds dirt cheap, no prescription needed. Here's a link to the generic Lamictal: http://www.life-pharmacy.com/generics/generic_lamictal.html
It's located in a place called Oceania. Has anyone had any experience with this organization, or similar on-line drug suppliers? Leave a comment if you have any experience.

Thanks to all for your emails and continued support. We are still here, just not staying in touch as often.

Any parent of a child with personality challenges such as bipolar disorder has heard it a million times: "Be tough with him", or "show him who's boss", or "if he doesn't follow the rules, throw him out". It's so frustrating because we're not dealing with an average child. Our son Kyle is not trying to make our life difficult, he's trying to merely get by in his life.

Karen and I went to a support group for loved ones of those with mental disorders and met a father of a schizophrenic boy. He was telling about how he threw out his son, and until the son hit rock bottom he wouldn't learn. Now I'm not saying this wasn't the right thing to do, but you can't look at these kids like you do the average child. The same rules are just not applicable.

The thing that scares me about this more than anything is the risk of suicide. I've read studies that say 15%, to 25%, to as high as 50% (depending on the study) of those with bipolar disorder will attempt suicide at least once. So, they hit rock bottom, and there's a 50-50 chance they'll attempt suicide?

The public does not understand, they really can't. The majority of parents of kids with mood disorders don't understand this. I don't understand this entirely, either. The greatest understanding comes from my wife, she has an insight to Kyle I just can't achieve. It's a fine line between allowing him to run roughshod over our family, and throwing him into depression or mania. It's one of those things they don't tell you about in "parent school".

Kyle has a job again, and the change in him is remarkable. This happens whenever he gets a job, his confidence returns, he gets more productive in his day to day life, and he is just a different person.

This shows me that disability is most likely a huge mistake for him. In fact, I can see how disability could be a huge mistake for most people in his situation.

Please don’t misunderstand this. Disability is ABSOLUTELY necessary in many scenarios, and I am in no way supporting any curtailing of any program designed to help those with bipolar or mental challenges. I am saying that collecting disability can cause a spiral of dependency. The lack of self worth causes more issues, potentially leading to the substance abuse that is so prevalent among those of us with this condition. It’s an insidious trap – the job gives the self confidence necessary for a normal life, yet they can’t hold a job due to their condition. Go on disability, and they can’t take a job as their assistance will terminate or cut back to nothing. So their confidence and self-worth will never be what it could, and they will never become contributing members of society. This leads to…

It’s the song that never ends.

But back to the positive. Kyle is happy, cheerful, and doing things around the house. He did his own laundry yesterday. He’s a joy to be around.

Now if we can talk him into getting on a program of meds he stands a fighting chance of keeping the job. But he feels so confident and good about himself right now he’ll never consent to start meds.

It’s the song that never ends.

Kyle came home yesterday, he was gone 6 days. He was home when Karen got home from work, acting like nothing had happened. We sat him down that evening, and told him he was an adult, and could do what he wanted to do, but he needs to consider the people who love him when he disappears. He seemed genuinely surprised that we cared, and that he had us worried.

So, it's life as normal. I never see him anyway, he avoids me like the plague, but at least I know he's safe.

Thanks again to all for your comments and emails. It meant a lot to Karen and I.

Thanks to all for leaving comments, and sending emails to us. It means a lot to Karen and myself. I have a hard time responding to comments, as blogger is blocked by my employer, and I have so little time at home between both jobs. But I get your emails, and your comments also come by email, so it's much appreciated. At least I'm able to post using Gmail.

Evidently Kyle has been staying with a friend, or maybe shuttling between a few friends. They both claimed they didn't know where he was earlier. He's been evidently avoiding his girlfriend. That's Kyle, he will avoid stress and confrontation at all costs. His girlfriend had an aunt coming into town that is evidently 'famous' in some way. She was anxious to introduce her to Kyle. Kyle is a good looking young man, presents himself very well, and is very poised and polished when he wants to be. But, and this is conjecture on my part, he couldn't handle the stress of this meeting, and took off. It's his exact MO. Anytime there's something he doesn't want to do, be it medically, socially, or due to employment, he takes off or gets so drunk he can't function, and therefore can't go.

His girlfriend came over yesterday and held the phone to my 18 year old son's ear and told him to dial a particular friend. Evidently she had a tip he was there. She knew Kyle wouldn't turn down talking to his brother. He tried to tell her the line was busy, but she immediately called back and hung up, telling my son it was free. He called, and talked to Kyle. Kyle said he'd be home in the next day or two.

That's all I know right now. At least he's not in the hospital, jail, or the morgue.

Our 21 year old bipolar son, Kyle, has been gone now since Thursday night - Friday morning. This isn't unusual, when things get too stressful for him, he disappears. We assume he goes on a bender, and usually comes back after 2 or 3 days. But he's not usually gone this long. We're a little concerned.

His girlfriend has been calling several times a day, she is very worried. She got some very mean text messages that said they were from Kyle yesterday, saying he wanted to break up, and being very mean. Karen told the girlfriend that Kyle would never do that, and he wouldn't. He's as compassionate as they come, and would NEVER knowingly hurt anyone's feelings. But she's scared, and hurt, and we don't blame her.

We've gotten some clues from various people so we know he's still alive (that really is a concern of ours), and he may be staying with a few different people. But he's not working, has no money, and is a sloppy drunk, so nobody will tolerate him for too long.

We get angry having him around the house, as he creates messes and is not respectful of our house or property, yet we miss him and worry when he's gone. That's the nature of a parent, I guess.

OK folks, I'm looking for answers here, and I have a feeling there's some experts out there. So if you could leave comments after this post, it would be MUCH appreciated.

We want to get Kyle (now 21) started on Social Security disability. He refuses to go along with it, for several reasons. So, I'm addressing his concerns.

First, if (when) he's approved, what if he decides to try to work again? I am assuming he loses his disability at that point. If he only lasts a few months at his job(which is normal), does he have to completely go through the application process again? What if his job does NOT offer medical benefits? Can he keep medicare or medicaid while working that job?

Is medical and presciption (medicare or medicaid) an integral part of Social Security Disability? If he qualifies for one, does he automatically get the other?

Next, I assume his benefits are for an amount of money that depends on how much he's contributed for the last 'X' period of time. Let's say $400 a month. What if he can hold a job for a long enough time that his benefits amount could potentially rise. When he stops working after that, assuming we don't have to reapply per the question above, does the increase become automatic?

He was looking forward to a job interview today that his girlfriend lined up for him. But when we checked in on him this morning, he was gone. He was presumably partying last night. It's his normal behavior. When he's nervous about something he copes by getting so wiped out the night before he can't make his obligation the next day. So I have my doubts that he'll be able to secure a job unless we fill out the application for him, and trick him into the interview. Then he'd perform well in the interview, he always does. It's the stress leading up to that he can't handle.

Any input on the SS process would be MUCH appreciated.

Cross posted to Living With A Purple Dog and Bipolar Support.

Just a quick update. Things aren't good, but they're not bad, either. Kyle's not taking his meds, and not going for counseling. He's not looking for work. He doesn't seem depressed, however. He stays up all night, and sleeps all day, and spends all his time in his bedroom. His girlfriend is over whenever she's not working. This is the same girlfriend we got a court order against a while back. We still don't know if it was her that was abusive to Kyle, or her family, or someone else. But she is trying so hard, and really seems to be a sweet girl. I am giving her the benefit of the doubt until things prove otherwise. She is very good for Kyle, very patient, and I know is pushing him. When he blows up, it's her he blows up at. But they seem to work it out. The phone still rings in the middle of the night, one time only. On those nights, we know we won't find Kyle home in the morning. I imagine he's out partying all night. At least he's not doing it at home.

Kyle avoids me like the plague. I wish he wouldn't, as when I try to seek him out I get manic. His bedroom is accessible only through our laundry room. Between Kyle and my wife that room is always a disaster - clothes all over the floor, junk everywhere. I just can't take it when I go in there, and Kyle knows that. I've asked them both to keep it picked up, but it goes in one ear and out the other. I think they do that just so I can't get to him. Damn, I'm getting upset just thinking about it. But I really wish he'd talk to me.

But things could be worse, they always can.

It's Christmas, how's everyone doing? Attitudes good?

In our house Kyle has NOT been doing well. He is not working, so has no money for Christmas. He has no transportation to get anywhere, and I doubt his girlfriend will take him to sell plasma for gifts (it's rumored he's done this before). And he is SUCH a generous person it really hurts him when he can't give the way he'd like to give. No matter how many times we tell him it really does not matter to us, that we just want HIM there with us, it doesn't help. He still gets angry and manic. That's not pleasant when that happens.

2 evenings ago, he went over the edge. This doesn't happen often anymore, but when it does it's awful. He was banging things, slamming doors, yelling obscenities, screaming, and so forth. He finally went outside and started screaming the "F" word at the top of his lungs.

When Kyle gets this way, I'm better off just walking away. If I try to confront him, he turns on me and either verbally hammers me, or gets in my face. This has been the source of the few physical confrontations we've had in the past. But when he's outside screaming obscenities at the top of his lungs, there was nothing else I could do.

I went outside and told him to keep quiet. He went off on me.
"Oh, right. Good talk. Good weekly talk with me. Give me more wisdom. Good talk."
I said "Kyle, the neighborbors don't want to hear this."
He said "No YOU don't want the neighbors to hear this!"
I told him "Nobody wants to hear this."

Then showing significant restraint, I turned and walked back inside. Pre-medication I would not have been able to walk away from this. He did shut up after that, thank goodness.

This is not a unusual exchange, it happens every month or so. But this time was unusual in that Kyle came up to me and apologized a few hours later. He has NEVER done that of his own accord. I think my wife may have had something to do with this, but it doesn't matter. He never does this.

Even given this, he STILL refuses to stay on his meds. We're not going to be able to tolerate this forever.

But given all this, it will be a wonderful Christmas if Kyle is there and in a good mood. He adds SO much to our family. I'm looking forward to our Christmas Eve celebration.