Thursday, September 17, 2015

"If I Die Young"

If I die young
bury me in satin
lay me down on a bed of roses
sink me in the river at dawn 
send me away with the words of a love song
the sharp knife of a short life
I've had enough time.

The other day I heard the refrains of this song coming from Thomas's room. He had, of course, found a different version,  more suited to his taste in music and his youth. I heard the song, though, and was immediately transported back a few years to a time when a neighbor boy that was Thomas's age died tragically in a summer boating accident. I stood outside his room, leaning against the door jamb with quiet tears rolling down my face as I remembered that time all of those years ago and how grateful I had been to have my boy with me still, with his whole life ahead of him. He would have been 16 then.

Then I really started listening to the song, not as a grieving neighbor to a lost young man but as a mom with a son with schizophrenia. It began to dawn on me that this song was being played by my boy and I began to wonder why he'd chosen this song. I watched as he unloaded the parts to a new Gundam model he was getting ready to build as he sang pieces of the song and it hit me,

He's singing a song about dying young.

I wondered where his mind was in that moment. 

Was he thinking of dying?

Did he see that he'd live a short life?

We talked a little bit about the song and I told him about how it had come out just at the time that our neighbor Jonas had died and I told him how sad I had been that such a young man lost his life. Then I wondered and asked him out loud,

"Does this song make you sad?"

He stopped what he was doing for a moment and simply said,


My heart dropped and I couldn't find any words to push the conversation any further. All I could think to say, and I did say it, was,

"Kiddo, if you start feeling like you want to die will you let me know?"

He promised me he would and I stayed in the door jamb to finish out the song and watch my beautiful boy.

The whole thing hit me pretty hard because just a day or so before, my mom and I had been having a conversation about my own death and about what family heirlooms would be passed on to Thomas. I had asked Thomas if he wanted anything from the family and he really didn't. Knowing that, it caused me to think about what would happen in the days and weeks after my death as Thomas began a life without me. Both my mom and I didn't know how he would survive. He has nobody to turn to, perhaps a friend would step up and take him in, but I have no idea. 

Then my mom voiced the one thing nobody wants to say but that a small piece of me thinks about. Would it be better if Thomas preceded me in death? I'm not talking about him ending his own life or God forbid him dying young at all but would it be better for him to live a relatively long life but find his way to heaven before me? With this illness you just never know. I never know if tomorrow he'll wake up and the voices will be back. I never know if he'll become so paranoid that he can't leave the house or if, God forbid, he becomes delusional and believes I am his enemy in some way. We all know the potential for this illness and we all, as caregivers, don't want to leave our loved ones to have to cope with the worst of the illness, alone.

I don't know. I just really don't know.

Most importantly here, though, is that Thomas has now become attached to a song that concerns me deeply. He loves music and he's cognizant of it's messages and I worry that this song, "If I Die Young", will somehow stick inside of him and cause him to think too deeply about his life and his death. 

Ever since the day I stood in the entrance to his room and listened to that song and cried quiet tears, I haven't been able to get the thought of losing my boy out of my head. I just don't know what I would do. He is my life. Yes, my life. He is my only child and he has been with me for almost 21 years now.

I don't want to lose him.

Tuesday, September 01, 2015

Let's Talk About My Mental Health

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I have had comments posted to my website lately that express concern for my mental health. I have read every one and taken them into consideration because I am always interested in how other people see things. I was even told by one person to print up a post of mine and take it to my therapist for him to review and help me with. All of the comments give me a lot to consider but I feel like I ought to say a few things to clear up where my head is at.

First of all, let's face it, being a caregiver is hard. There are good days and there are bad days and anyone with any love, compassion, hope, a desire to make things right for our loved ones, and grief over the truth of the entire situation feels stress and feels helpless from time to time. Not only that, it's been my experience that even anger and frustration come into play. This is not said lightly by me as I have met countless people who feel exactly like I do. It's not easy and it never will be. It is heart-wrenching that our loved ones are sick and generally the prognosis is not good and all of this makes for a caregiver who becomes stressed out from time to time. Sometimes we even need to see a therapist ourselves and sometimes we need some kind of medication to reinforce the therapy we have sought. There is no shame in this, I think it should almost be a prerequisite for being a caregiver to someone who is seriously ill, and I think, if you're not already in therapy that it's not a bad idea to give it a try sometime. For me, I have a therapist and because I also live with bipolar disorder, I have medications I take to manage it. You could say I am fully covered in that department but that does not make me invincible. I am human and I am going to falter. Not only that, because life is cosmically balanced in my opinion, I will also triumph in places others might not expect me to triumph. This goes for all of you too. Caregiving will never be easy but I'm certain very very few of us would give it up.

Second, for me, what I struggle with, why I get frustrated and angry, is because I feel a great deal of pressure from the outside to "get it right" for Thomas. His therapist, while very well-meaning, puts a lot of pressure on me and sometimes, especially lately, it's hard for me to cope with. I think we tend to look to professionals for the answers to what is wrong with our loved ones with schizophrenia and to also depend on them to help. Sometimes my expectations of Dr. K. are high; I want him to make this all go away. That's unfair and unrealistic but I still wish for it. For his part, where I am concerned, each week, lately, has been met with a "homework" assignment, sometimes more than one, that Thomas or both Thomas and I must complete. The homework seems simple sometimes, in theory, but it's not most of the time. As a result, I walk away with Thomas from a session feeling like what's ahead for the week for us is difficult, if not impossible. I know that Dr. K. wants to help Thomas and I get him ready for the real world but he sees Thomas just once a week and often he really just doesn't have a clue about Thomas's reality once he's home and he doesn't have a clue about what my life is like outside of being a caregiver. Just last week I tried to explain to him something about Thomas and how he comprehends things and because it's hard for me to make sense of sometimes, it's even harder to try to explain to someone else, especially when there's just 10 minutes left in the session and I can't get my thoughts together enough to explain what is going on. All of this amounts to a great deal of pressure and pressure, at least inside me, breeds frustration and sometimes anger. I want to do what ever I can to help Thomas but it just isn't always possible.

Then there is life outside of caregiving. There are familial relationships to live with that aren't always easy to deal with. I'm sure many of you can attest to the pressures that spouses, parents, siblings and friends put on us. It's not just about caregiving and whether or not we are doing it right in their opinion but there is also the element of the maintenance of relationships that already had their own flaws long before we ever became caregivers. Then there are the tragedies, the other illnesses that claim family members or friends. For the first two years after Thomas was diagnosed, my dad had a stroke, 2 brain surgeries and then finally succumbed to death. While trying to take care of Thomas at his worst, I also had a beloved parent who was suffering and dying and who needed equally constant attention. My dad is gone now and I am left with only grief that creeps in from time to time but even grief takes a toll that puts a chink in my caregiver armor.

As such, taking all of these things into consideration, not to mention the myriad other things that any given day brings me, I do struggle, I'm the first to admit that my mental health is far from stellar, I am flawed in my relationships including my one with Thomas, and


Even still, I love Thomas. He is my only child. My commitment to him started the day I learned he was in my belly and it remains to this very moment and beyond. I will never be a perfect mom to him nor will I be whole and invincible, so yes, I will struggle but I suspect that so will all of you.

I know I'm not alone in this role of caregiver for someone living with schizophrenia and I know that I'm not alone in what I've said today. In fact, I think we are a community of like-minded people all over the world who fiercely stick together, fight for each other and, most importantly, fight tooth and nail for our loved ones even if we fail sometimes.

So, let's talk about my mental health. You know what? I think I am doing okay given the circumstances. I am in the game, I haven't given up and I will continue to do my very best to care for Thomas and myself including the others around me who need me from time to time.

I won't always do it "right". I won't always live up to people's expectations but I will always be trying my best.

And I know, so will all of you.

We're all going to be okay.

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