Let them try it for a week...

Well, I guess I brought down the house with the last post “Warrior Woman.” It was pretty raw and from what I’m hearing it stirred a lot of emotions in people. Didn’t intend it to. I was just putting it out there. Trying to release all of the crap that is going on in me internally…so I can continue to move forward and not get so bogged down in this stagnant place of sadness, fear and anger. It’s a fucked up situation and it will continue to be fucked up. I need to pull myself together without dwindling the few remaining emotional and physical reserves I have left, so I can keep plowing on ahead. Plowing on ahead would be an optimistic term at best for me to say at this point. Honestly it’s more like blind and stumbling in the dark. But I know eventually we’re going to see some light in this heartbreaking situation. I just don’t know when or how.

But onto updates…
David has since lost his job. Not due to the incredible people he works with, it’s just that his short term disability ran out and the only option was long term disability or nothing. It was one of the hardest things I’ve ever had to tell David…besides the day I had to tell him that he had a really nasty malignant brain tumor. That was a bad day too. But this day sucked because through all of his kvetching, he loved his job. It gave him focus and kept him moving and thinking. It gave him something to strive for and he felt like he was contributing to the family. This became more and more important as our finances became increasingly messed up due to the Cancer treatments and the frequent periods off work. Although he never intended any of this to happen, I know that working was extremely important to him. Both financially and emotionally. He always was a social person and work was someplace he could go and interact with people all day. And to tell him that he no longer was able to go back there, at this time, in a working capacity was awful. It was yet another blow and for him another thing the Cancer had taken away. God I hate this disease.

I on the other hand have begun working full time, so that Alec and I could have health benefits since those were lost as well. My job has been fabulous and supportive. They’ve taken me on 30-hours a week and given both Alec and me benefits. To say I’m grateful is an understatement. But trying to juggle 30-hours a week in work, being a caregiver to my husband, raising our child and then wadding through the paperwork, appointments and everything else that comes along with his disability is insane. I wake up in a flurry …getting both boys dressed, fed and moving. I continue at mach speed for the remainder of the day only to end when I wind down for 30 minutes before bed with a good book. I know I can’t continue at this pace, and yet what choice do I have? The support continues to come in from friends and family and they’re keeping up on all of our life errands that I never seem to have time to get to. And yet with all of this support…it’s still difficult.

How on earth do people do this without support, I ask yet again? I can’t comprehend it. The doctors release patients’ home, needing 24-hour support and yet look scathingly at you when you say this will be difficult. Not that I would ever not do it…just that it will be difficult. I ask just one of them to live a week in our shoes. Would their friends rally around them like ours have? Would their family come and help out their loved one while they’re at work? Let them try it for a week and then see how much more empathetic they are. Because it is hard…no matter how much love and support you have. It’s hell to watch the man you have loved for 16 years fade before you. To have him unable to care for himself and the frustrations and anger that he experiences and exhibits because of it. To have him have good moments and then be completely and utterly confused the next. To be trying to keep it together so your son can have at least some sense of stability and take moments away from the chaos to play and be a mom, and then do all the other stuff that needs to get done on top of that. I know. I sound bitter. It’s just staggering the lack of support for caregivers at this stage of the game. If the patient is in the “final stages” there is a bevy of support. But for where we’re at now…there isn’t much from the system. There are a lot of programs out there for the patients, which is critical as well. But very little for the caregivers. I’ve asked and been told, “Oh, you’re just the caregiver…that program is for patients only.” Don’t get me wrong. I’m not belittling what David is enduring by any means. He is going through hell as well. It’s just that the system needs to help out the people who take care of their patients, because they are what keeps the household together and they are the one’s that care for the patients. And to them…they aren’t patients. They are husbands, wives, mothers, fathers, children and friends.