It is impossible for anyone to know exactly what life is like for us right now. I know lots of people have personal experiences dealing with cancer in one way or another, but every cancer is different, and every story is too.
I wish that I could somehow communicate the odd chaos of the past year and a half, and particularly how life has changed in the last three days even. If you have ever been involved with being a caretaker during the physical and mental decline of a loved one, you might have a bit of an idea what it is like. Add to that the preceeding twenty one months of battling cancer, and you have quite an interesting story going on.
We are at the point of making sure one of us is always at Mom and Dad's while we try to mesh four different schedules into the picture. I am now rarely home. There have been dirty dishes sitting in our sink for several days now. But I've at least gone to sleep in my own bed so far each night, unlike my brother Jeff (what an amazing sweetheart he is). I didn't go to work today and probably won't make it there tomorrow either. I can't even remember what day it is or what happened yesterday versus today or Monday. I'm always feeling like I'm forgetting something, followed by suddenly remembering something that I know I will soon forget. It's just because the needs are so vast and so hard to fulfill, and I continually feel a sense of responsibility to take care of it all. Even delegating or asking for help becomes difficult when there is no time to even make a phone call or write an email during the day.
My dad can be more easily confused or occasionally fearful now. He is fairly talkative, but sometimes it doesn't make much sense. When he is communicating well, it can sometimes be difficult to sort out what he is really trying to say as he searches for word choices. A laugh, a smile, maybe even a one-liner, are treasured reactions. At times, he can be cracking jokes and laughing at the strange predicaments we find ourselves in, and at other times, he is very confused and asking strange questions. He often asks the same question every minute or so because he doesn't remember. This is a new development for us in the last twenty four hours, and we are learning as a family how to respond to him in a comforting and clear way.
Tonight was a beautiful picture. He wanted to get out of bed in order to enjoy some family time at the table. So there we gathered, laughed, and had just enough sense of "normal" to relax for a few minutes before bedtime...where we would again make the tedious transfer between bed and wheelchair one last time before the end of the day's work.
I feel like we need help. The problem is knowing what would actually be helpful. It's at the point where I really don't know anymore until something randomly comes up that needs to be addressed. None of us can really keep up with it all...and that can be frustrating for a to-do list person and problem solver like me. I want to organize everything and tackle it in an orderly, efficient way, and that's just not life right now. It's one day at a time, each detail as it comes.
I told my dear friend Rebe at the start of the day that I hoped it wouldn't be another "survival mode" day. She looked at me and wisely said, "And if it is, that's okay too."
And it is. It's just so odd to suddenly find myself there so abruptly. The interesting thing is, even being there, something is so terribly and awkwardly funny about catheter adjustments and poop, especially when your father is having a good chuckle about it too. Oh, how we Harrises love to laugh.
I love my family. I love my Dad. What a wonderful thing that we are together.
Wednesday, October 27, 2010
Tuesday, October 26, 2010
processing
Glioblastoma does to the body what other cancers do but with alzheimer's symptoms mixed in.
I'm hoping my mom will be able to find some sort of affordable 24/7 assistance in the near future to give her a break. She is so physically worn out from being the constant caretaker of a disoriented and immobile man. She is at peace, but so very, very tired.
My life has kicked into crazy gear. Today was a 13.5 hour day away from home with no time to rest. I am still having to to juggle my two jobs, take care of my own home, and meanwhile, tending to my parents' (and grandmother's) needs. I have been over at their house for several hours every day except one in the last week. I know even just me being there has a tremendous impact--my mother's weary face brightens up everytime she sees me. My dad is simply happy just being around those he loves. My grandma has someone that she can talk to freely about simple joys or worries in her day. I am happy to be there, but it is draining. I can't even imagine what my mom feels like right now.
We also had to finish preparing the house on Ormond this week to be put on the market by Friday. I can't tell you how thankful I am for my sister in law and my brother--they had the energy and the vision to tackle a nearly impossible goal, and it is happening! Ormond is so close to being out from under our feet. That alone has been a nearly two year battle, and I know it's a comfort to both my mom and dad to have it be nearly out from under them as well. The effect of having the pressure of a seemingly impossible deadline, however, exponentially added to my stress level this week. It just seemed like the worst possible time to make this happen. But here we go!
* * *
I had a friend, so sweet and well-meaning, approach me today with advice about a doctor in New York who is practicing more alternative methods for cancer treatment. She pulled me aside and began explaining why she would recommend checking into his research and seeking care there. I listened until she was finished, calmly thanked her for sharing the information, and then explained our situation.
I was struck with how awkward it is to see people want to help in some way but not be able to help in the way that is needed. Instead of asking me what our situation was or asking if we needed anything, she jumped into an assumption that her information would be helpful.
I'm sure this must happen all the time. I know most people don't know how to respond, or maybe they just simply feel uncomfortable. They want to do something helpful or even maybe feel that they need to do something...and that's not necessarily wrong as long as their need to help doesn't trump the actual needs of the people in trouble. In that case, it puts those of us in these awful situations in an unusual spot. If someone is offering help that isn't helpful--maybe harmful--then how do we react? What if you want to just "pop in to say hello" and we really just can't handle it? Are we allowed to deny you the right to visit us?
If I may, a word of advice. The best help is availability...communicate your availability and mean it. Don't assume anything. Trust us that we will ask for your help if you tell us exactly what you are prepared to do. The best and most comforting offers of help go like this:
"Is there anything I can do to help? I am available during (days/times) to do (errands/household tasks/bring food/visit/etc). Don't hesitate to ask, really."
Even reading this makes me tear up as I think of all the people who have said these very words to me. Marie, Pam, Jeannie, Ryan, Katie, Annette, Terri, and so many others. And still more that haven't said it in so many words, but where it is implicitly understood that they would do anything for us. We have had so much help from so many...and it has been so genuine and so selfless and serving.
Forgive me for my rantings above. I'm not complaining, just thinking aloud. I am so incredibly thankful for those around us who love us so much.
* * *
Writing is good for me. Between that and conversing, it is how I process.
I am doing well. Tired, stressed, but unusually well. I am verbalizing my needs and pushing through when I just need to keep going. I may end up crying in the arms of my husband most nights or in front of my new clients or boss occasionally, but it's the way it needs to be. I am okay with this. There is no doubt of the divine purpose and the endless, deep love of Jesus. I soak it up. I take long hot showers where I am so aware of Him holding me still, holding me near. He is so good and faithful; there is no doubt.
So...off to the shower where, even at the end of a long day, I am renewed.
I'm hoping my mom will be able to find some sort of affordable 24/7 assistance in the near future to give her a break. She is so physically worn out from being the constant caretaker of a disoriented and immobile man. She is at peace, but so very, very tired.
My life has kicked into crazy gear. Today was a 13.5 hour day away from home with no time to rest. I am still having to to juggle my two jobs, take care of my own home, and meanwhile, tending to my parents' (and grandmother's) needs. I have been over at their house for several hours every day except one in the last week. I know even just me being there has a tremendous impact--my mother's weary face brightens up everytime she sees me. My dad is simply happy just being around those he loves. My grandma has someone that she can talk to freely about simple joys or worries in her day. I am happy to be there, but it is draining. I can't even imagine what my mom feels like right now.
We also had to finish preparing the house on Ormond this week to be put on the market by Friday. I can't tell you how thankful I am for my sister in law and my brother--they had the energy and the vision to tackle a nearly impossible goal, and it is happening! Ormond is so close to being out from under our feet. That alone has been a nearly two year battle, and I know it's a comfort to both my mom and dad to have it be nearly out from under them as well. The effect of having the pressure of a seemingly impossible deadline, however, exponentially added to my stress level this week. It just seemed like the worst possible time to make this happen. But here we go!
* * *
I had a friend, so sweet and well-meaning, approach me today with advice about a doctor in New York who is practicing more alternative methods for cancer treatment. She pulled me aside and began explaining why she would recommend checking into his research and seeking care there. I listened until she was finished, calmly thanked her for sharing the information, and then explained our situation.
I was struck with how awkward it is to see people want to help in some way but not be able to help in the way that is needed. Instead of asking me what our situation was or asking if we needed anything, she jumped into an assumption that her information would be helpful.
I'm sure this must happen all the time. I know most people don't know how to respond, or maybe they just simply feel uncomfortable. They want to do something helpful or even maybe feel that they need to do something...and that's not necessarily wrong as long as their need to help doesn't trump the actual needs of the people in trouble. In that case, it puts those of us in these awful situations in an unusual spot. If someone is offering help that isn't helpful--maybe harmful--then how do we react? What if you want to just "pop in to say hello" and we really just can't handle it? Are we allowed to deny you the right to visit us?
If I may, a word of advice. The best help is availability...communicate your availability and mean it. Don't assume anything. Trust us that we will ask for your help if you tell us exactly what you are prepared to do. The best and most comforting offers of help go like this:
"Is there anything I can do to help? I am available during (days/times) to do (errands/household tasks/bring food/visit/etc). Don't hesitate to ask, really."
Even reading this makes me tear up as I think of all the people who have said these very words to me. Marie, Pam, Jeannie, Ryan, Katie, Annette, Terri, and so many others. And still more that haven't said it in so many words, but where it is implicitly understood that they would do anything for us. We have had so much help from so many...and it has been so genuine and so selfless and serving.
Forgive me for my rantings above. I'm not complaining, just thinking aloud. I am so incredibly thankful for those around us who love us so much.
* * *
Writing is good for me. Between that and conversing, it is how I process.
I am doing well. Tired, stressed, but unusually well. I am verbalizing my needs and pushing through when I just need to keep going. I may end up crying in the arms of my husband most nights or in front of my new clients or boss occasionally, but it's the way it needs to be. I am okay with this. There is no doubt of the divine purpose and the endless, deep love of Jesus. I soak it up. I take long hot showers where I am so aware of Him holding me still, holding me near. He is so good and faithful; there is no doubt.
So...off to the shower where, even at the end of a long day, I am renewed.
Thursday, October 7, 2010
sinking in
"So has it hit you yet?"
At the time, I was mopping the kitchen floor, bending over occasionally to scrape up a dot of paint with my fingernail. I glanced over at Ryan on the living room couch.
"I guess," I said, pausing to lean on the mop. "I mean, I've gotten used to living here."
"Me too," he agreed. "But I'm not sure it's sunk in yet that it's actually ours."
Tonight, I am soaking in a delightful fall evening on my back porch, drinking Tetley British Blend with half-and-half and listening to Chopin's nocturnes and acoustic Christmas music while I write this. Every now and then I catch a whiff of my cinnamon spice candle. It makes me start thinking of gingersnaps and shortbread cookies. A boy across the street is shooting hoops to the light of his garage floodlight. Other than the few houses that have outside lights on, it is nearly pitch black in our little section of neighborhood. The moon is nowhere to be found, and the lack of glaring street lights seems mysteriously cozy.
I suddenly realize that this is what I have been waiting for--a place of relaxation and inspiration. And here it is, tonight on my back porch. It is so quiet, so peaceful, so secure. Is this what home feels like? Because I really, really like it.
I know there is something magical about the fall, and it doesn't seem to matter where you live. As a life-long Floridian, I've never really seen seasons change before. For me, I only know it's fall because a couple of mornings ago, I walked outside and it was below eighty degrees. And when I stopped by the beach today, I realized I could be laying out and not get too uncomfortably sweaty. But apparently, that's all it takes.
Something warm and fuzzy starts to happen to me when I notice the winter coming. I start longing for comforts of home--peaceful music, warm liquids, family and friends, baked goodies, sweaters.
I am amazed and so thankful that I can come home, to our home, and enjoy all of these things with a sense of serenity and permanence. God's provisions for us are unfailing; no matter how long we have to wait or what awkward circumstances we find ourselves in beforehand, He is faithful to give us more than we could have asked for or even imagined because we waited on His timing.
Why is it that after so many times of seeing His faithfulness, I am still so amazed? Oh how He loves us...
At the time, I was mopping the kitchen floor, bending over occasionally to scrape up a dot of paint with my fingernail. I glanced over at Ryan on the living room couch.
"I guess," I said, pausing to lean on the mop. "I mean, I've gotten used to living here."
"Me too," he agreed. "But I'm not sure it's sunk in yet that it's actually ours."
Tonight, I am soaking in a delightful fall evening on my back porch, drinking Tetley British Blend with half-and-half and listening to Chopin's nocturnes and acoustic Christmas music while I write this. Every now and then I catch a whiff of my cinnamon spice candle. It makes me start thinking of gingersnaps and shortbread cookies. A boy across the street is shooting hoops to the light of his garage floodlight. Other than the few houses that have outside lights on, it is nearly pitch black in our little section of neighborhood. The moon is nowhere to be found, and the lack of glaring street lights seems mysteriously cozy.
I suddenly realize that this is what I have been waiting for--a place of relaxation and inspiration. And here it is, tonight on my back porch. It is so quiet, so peaceful, so secure. Is this what home feels like? Because I really, really like it.
I know there is something magical about the fall, and it doesn't seem to matter where you live. As a life-long Floridian, I've never really seen seasons change before. For me, I only know it's fall because a couple of mornings ago, I walked outside and it was below eighty degrees. And when I stopped by the beach today, I realized I could be laying out and not get too uncomfortably sweaty. But apparently, that's all it takes.
Something warm and fuzzy starts to happen to me when I notice the winter coming. I start longing for comforts of home--peaceful music, warm liquids, family and friends, baked goodies, sweaters.
I am amazed and so thankful that I can come home, to our home, and enjoy all of these things with a sense of serenity and permanence. God's provisions for us are unfailing; no matter how long we have to wait or what awkward circumstances we find ourselves in beforehand, He is faithful to give us more than we could have asked for or even imagined because we waited on His timing.
Why is it that after so many times of seeing His faithfulness, I am still so amazed? Oh how He loves us...
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