I'll keep this front up for as long as I can.
In the mean time, this sadness is eating me from the inside.
I'm just sorry I can't be stronger.
Wednesday, November 3, 2010
Keep Calm and Carry On
My dad called today to tell me he was leaving this Friday. It's the usual 2 day notice that I am granted and nothing more. I won't be seeing him for another 2 months. As his last obligatory words as a father before he departs (and don't hear from until he's back), he advised me to put aside some 'me time' and invest in my well being. I think this is something that I've been needing to hear from him, someone who has been part witness of this hell of a time... acknowledgment that I've been put through quite the pandemonium as of late. I haven't slept in what feels like weeks and I don't know how I'm going to reclaim all the time lost.
I think my brother is going to be okay for now. I've devoted more time to his healthcare than I have ever invested in my own...yet I still feel like I can't do enough. Finding doctors of all specialties, occupational, physical, and speech therapists that take his insurance, making appointments, attending said appointments, working as an interpreter for my sister in law, following up with all the health care professionals while taking my own notes of his progress, getting in touch with social workers to learn what his options are, keeping the family in the know, visiting him in the hospital everyday for weeks during lunch and then after work, and working on exercises together. Understanding his needs, informing and keeping him focused. I've been fighting so hard for him but I'm realizing that there is no end and I am feeling defeated. There is no cure. There is just waiting for it to get worse and figuring out how to work around it.
What words of encouragement do you tell someone who is chronically ill, when you know it doesn't get easier? How can you tell someone how to live when their sight, hearing, and speech are disappearing simultaneously? We're no longer referencing Helen Keller at this point. Imagine you are someone who has experienced life through all your senses and is slowly being stripped of them. How about swallowing...lets take that away and put in a PEG tube; no food or water by mouth. And strength and balance. Mix in delayed cognition and mental blocks. Frost on years of pent up anger and not a tear shed. Finally, lets plant you in a family that does not sympathize because they refuse to understand the circumstances - not a soul to turn to, except a younger sister, someone you used to be the cool big brother of but now the tables have changed. This is my brother at age 35. Someone who understands that he doesn't not have the strength and thereby is too afraid to pick up his 2 year old and play with her. So he watches over her as she sleeps because it's his way of protecting her. And this is the best part of his day.
I am learning that I cannot force help on my brother...when he turns away Home Care and requests therapists to stop their visits - I cannot be there to monitor him every second of the day. Although, I am JC's proxy I need to come to terms with respecting his decisions even if they're, in my opinion, not the best ones.
As somewhat of a side note, I'm reminding myself not to complain about my situation or about my everyday life in general. If anything has changed, it has been my threshold of withstanding people complaining. Yea, I am tired but JC is more tired. Yea, you had a bad day but JC can't catch a break. When I hear people whine and bicker, I think of how small and self-centered their world is and it's infuriating and upsetting at the same time. Because there is always someone who has it worse than you and the truth is, you probably don't have to look too far to find that person. For me, it's just a matter of looking at a family photo.
I think my brother is going to be okay for now. I've devoted more time to his healthcare than I have ever invested in my own...yet I still feel like I can't do enough. Finding doctors of all specialties, occupational, physical, and speech therapists that take his insurance, making appointments, attending said appointments, working as an interpreter for my sister in law, following up with all the health care professionals while taking my own notes of his progress, getting in touch with social workers to learn what his options are, keeping the family in the know, visiting him in the hospital everyday for weeks during lunch and then after work, and working on exercises together. Understanding his needs, informing and keeping him focused. I've been fighting so hard for him but I'm realizing that there is no end and I am feeling defeated. There is no cure. There is just waiting for it to get worse and figuring out how to work around it.
What words of encouragement do you tell someone who is chronically ill, when you know it doesn't get easier? How can you tell someone how to live when their sight, hearing, and speech are disappearing simultaneously? We're no longer referencing Helen Keller at this point. Imagine you are someone who has experienced life through all your senses and is slowly being stripped of them. How about swallowing...lets take that away and put in a PEG tube; no food or water by mouth. And strength and balance. Mix in delayed cognition and mental blocks. Frost on years of pent up anger and not a tear shed. Finally, lets plant you in a family that does not sympathize because they refuse to understand the circumstances - not a soul to turn to, except a younger sister, someone you used to be the cool big brother of but now the tables have changed. This is my brother at age 35. Someone who understands that he doesn't not have the strength and thereby is too afraid to pick up his 2 year old and play with her. So he watches over her as she sleeps because it's his way of protecting her. And this is the best part of his day.
I am learning that I cannot force help on my brother...when he turns away Home Care and requests therapists to stop their visits - I cannot be there to monitor him every second of the day. Although, I am JC's proxy I need to come to terms with respecting his decisions even if they're, in my opinion, not the best ones.
As somewhat of a side note, I'm reminding myself not to complain about my situation or about my everyday life in general. If anything has changed, it has been my threshold of withstanding people complaining. Yea, I am tired but JC is more tired. Yea, you had a bad day but JC can't catch a break. When I hear people whine and bicker, I think of how small and self-centered their world is and it's infuriating and upsetting at the same time. Because there is always someone who has it worse than you and the truth is, you probably don't have to look too far to find that person. For me, it's just a matter of looking at a family photo.
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