It's Saturday. Last night was spent in my own abode sitting on the couch watching DVDs from Red box. Very cool, very peaceful. Here's my itinerary, at 1:30p.m. I'm off to do my volunteer work for hospice, where I get the opportunity to drive a patient's wife from one facility to another, so she can visit with her husband for about 3 hours. I usually pick her up again at 4:30 p.m. to take her back home. In between I'll spend a pleasant hour or so chatting with another hospice patient, a really gracious, classy 80-year-old woman so full of life and verve she always leaves me amazed. It's going to be a good day. Having some alone time has done wonders for my mood. At 5:30 tonight I'll return back to my place and sit in front of the TV again to just...chill. I'm loving it.
Yesterday, Megan, my niece, spent time with Dad, chauffeuring him around on some errands and fixing his dinner. Today and tomorrow my sister Jean will stop by for a short visit to check on Dad, and feed the dog. Cool. She was very willing to spend the entire weekend with him, however he wouldn't let her bring her dog. Vicky will drop by as well to tidy up the space where Dad has parked his bed. It's a pigsty. Nice to see what prevails when Debbie and I step aside. He'll be just fine.
Geez, I'm already looking forward to next Friday. Ciao.
P.S. Debbie called to "warn" me she's stopping by and will be staying the night. So much for alone time. It's alright though 'cause everything's back to normal for this weekend, and that's okay with me.
Saturday, April 24, 2010
Pissed
I must be the worst caregiver ever. I just spent about a hour on the phone with my uncle complaining about my dad, my frustrations over his nasty attitude, and without a doubt conveyed my total discombobulated state of crazy. I'm sure he thinks I'm the worst kind of daughter, and will no doubt tell the rest of his siblings their eldest brother needs to be rescued from his uncaring offspring. My uncle will be here on January 27th - THANK GOD! He said he'll stay either 2-3 weeks. Notice how he gives himself the out of being able to leave earlier. He knows his brother well. For the record, I love my dad--would do just about anything to help him recover, but he can be very, very difficult. This isn't an anomoly, he was difficult before his surgery.
Before the surgery we tried to assure him that he could count on us to help him recover. His response, "Oh well, everybody says they'll help but..." I truly do not know why he has such a lack of faith in us. Okay, so I grit my teeth and allow his comments to flow over me like the sea. Positive energy in, negative energy out...breathe.
So yesterday my dad and I take a trip to the store and then stop at the gas station. Out of the blue, he says he's decided he's going to start driving again next week. I remind him that the doctor said he didn't want him behind the wheel of a car for at least a month. "Well," he says. "You don't know what he said you weren't there." Did I tell you my dad was a master manipulator? I work full time, but between me and the rest of my family, we make sure his needs are met, and up until today, we never left him alone. He continues, "The doctor just wants to make sure I can get to my chemo treatments every Wednesday." We'd taken him to every appointment since he got out of the hospital but for some reason he'd come to the conclusion we weren't taking him to his chemo appointments? Positive energy in, negative energy out. I take a deep breath before responding. "Dad, we will make sure you get to your chemo treatments." Silence. "Well," he says. "Everybody says they'll help but then..." I lost it. Because this was almost three weeks after checking him out of the hospital, and after changing countless colostomy bags, and after only half sleeping because of trying to keep ears open to any sound that he's in distress, and after changing his bandages, keeping his wounds dry and clean, and cooking his meals and cleaning up clothing dropped in the middle of the floor in the kitchen, outside of the laundry room, on the floor in the living room aka makeshift bedroom. And after all that, nothing seems to change his opinion of his worthless, fucking daughter. I'm so tired.
I'm looking forward to spending some alone time at my own home tomorrow. But I'll be back Sunday night...or Monday. Maybe.
Before the surgery we tried to assure him that he could count on us to help him recover. His response, "Oh well, everybody says they'll help but..." I truly do not know why he has such a lack of faith in us. Okay, so I grit my teeth and allow his comments to flow over me like the sea. Positive energy in, negative energy out...breathe.
So yesterday my dad and I take a trip to the store and then stop at the gas station. Out of the blue, he says he's decided he's going to start driving again next week. I remind him that the doctor said he didn't want him behind the wheel of a car for at least a month. "Well," he says. "You don't know what he said you weren't there." Did I tell you my dad was a master manipulator? I work full time, but between me and the rest of my family, we make sure his needs are met, and up until today, we never left him alone. He continues, "The doctor just wants to make sure I can get to my chemo treatments every Wednesday." We'd taken him to every appointment since he got out of the hospital but for some reason he'd come to the conclusion we weren't taking him to his chemo appointments? Positive energy in, negative energy out. I take a deep breath before responding. "Dad, we will make sure you get to your chemo treatments." Silence. "Well," he says. "Everybody says they'll help but then..." I lost it. Because this was almost three weeks after checking him out of the hospital, and after changing countless colostomy bags, and after only half sleeping because of trying to keep ears open to any sound that he's in distress, and after changing his bandages, keeping his wounds dry and clean, and cooking his meals and cleaning up clothing dropped in the middle of the floor in the kitchen, outside of the laundry room, on the floor in the living room aka makeshift bedroom. And after all that, nothing seems to change his opinion of his worthless, fucking daughter. I'm so tired.
I'm looking forward to spending some alone time at my own home tomorrow. But I'll be back Sunday night...or Monday. Maybe.
Instructions
I think the instructions the doctor gave us for taking care of dad are in Japanese 'cause I have know idea how to do this thing we're suppose to be doing. Like how much to do or not do for my dad on his way to recovery. Our goal was to assist him in the recovery process so he could heal in his own home and eventually return to his "normal" routine, and the word normal is tentatively used as we still have to determine whether his normal routine will be conducive to his overall recovery and state of mind. His pre surgery norm involved waking up, (after waking I'm not sure the order of his day but something like this): dressing, feeding the dog, taking insulin shot at some point, eating and sitting in his chair until 8:00 pm listening to classical artist, Andre Rieu, or watching History Channel. He goes to bed at 8:00 -- no calls from us he says after 8:00 pm.
The first day he was released from the hospital seems to have been his best day ever. He asked that we stop at the Safeway store down the street from his house. Debbie, my niece, who was following behind us in her car, helped me get him out of my SUV, big step to the street. I felt like I was going to puke, I was so nervous. What if he fell? But as I watched him strut down the isles tossing ding dongs, chocolate milk and everything else not on the list of foods to eat for a diabetic (my dad hasn't strutted in years), I started to feel hopeful. I'll get back to a discussion on his eating habits in another post.
The first day home, my dad was soon to become familiar with those nasty emotions associated with vulnerability and helplessness, not pleasant for anyone, I think even more difficult for a strong, prideful man like my dad. After Debbie and I had turned in for the night we were awaken by a thump and rushed downstairs. Dad was down on his knees on the floor struggling to get to his feet. He'd tripped over an extension cord laying across the carpet. He agreed to use the walker after that so the next time (please no next time), he could pull himself up with the aid of the walker. Debbie showed him how it was done. So he started using the walker, and now at times he seems to hang onto it like he never intends to let it go. He doesn't strut anymore. Debbie and I stayed at his house weeks after the surgery (just me now - she had to go home to prepare for a trip to Asia in February - Yea!). At night, in the upstairs bedroom, I can hear the clunk, clunk of the legs of the walker striking the floor as he slowly navigates from the living room where he's stationed (rented hospital bed set up in there), to the bathroom. Then he returns to his bed, and sits there helpless until someone can lift his legs onto the bed, and there he lays, all night, all day. When he needs something, he just yells and we get it. I don't want to enable him, but I think that may be happening. How do you say no to someone you love in such a vulnerable position? His body is healing up just fine, but after such a traumatic surgery...I don't know...somethings off.
Now his routine is just laying in bed and he doesn't get up except to use the bathroom. No longer feeds the dog (although he's physically able-that's become my job), doesn't even listen to Andre Reiu --which he never went a day without pre surgery, takes his insulin and eats, sometimes, if he can manage to get up after taking the pain pills all day. He seems to be leaning on the medication more and more even though his pain level has decreased significantly. The weird thing is he didn't even want to use the pain pills when he first got home, and that was when the pain was at its worst. Now it's like he can't do without them. Like he's suffering from a form of post traumatic stress syndrome. Worries me but home health nurse and doctor, who just refilled his prescription for 3 refills, doesn't appear to be the least bit worried, even when I complained the pills were making him lethargic, and less willing to be an active participant to a new day. But then, they don't know him like his family does. These days the only time he's out of his robe is when he has a doctor's appointment. Every once in a while he'll ask someone to drive him to the store which gives me great joy because at least he's getting out of the house.
Inside my chest I feel like there's a volcano just on the verge of erupting. There must be a book or article or something that can offer some direction on what to do with all the emotions you gotta carry around during this process. I'm overwhelmed, terrified, because this is a familiar road--first the diagnosis, then the treatment, and then...I don't even want to go there right now. I don't think I'm supposed to...not before it's time anyway. But I can no longer hide behind the guise of innocence like I did with my mom and Kenny. Cancer is ugly, and mean, cruel beyond measure. My dad is at stage 3 - I've googled and now I know more. The cancer has spread to his lymph nodes --I didn't ask the doctor how many nodes are affected. I need to do that. Chemo treatments start next Wednesday, and every Wednesday for the next 7 or 8 weeks. And after treatment...what then? I want to be positive, I need to be positive. But my dad is 78 years old, and in addition to cancer, he has diabetes, and kidney disease, and heart disease. I can't breathe.
The first day he was released from the hospital seems to have been his best day ever. He asked that we stop at the Safeway store down the street from his house. Debbie, my niece, who was following behind us in her car, helped me get him out of my SUV, big step to the street. I felt like I was going to puke, I was so nervous. What if he fell? But as I watched him strut down the isles tossing ding dongs, chocolate milk and everything else not on the list of foods to eat for a diabetic (my dad hasn't strutted in years), I started to feel hopeful. I'll get back to a discussion on his eating habits in another post.
The first day home, my dad was soon to become familiar with those nasty emotions associated with vulnerability and helplessness, not pleasant for anyone, I think even more difficult for a strong, prideful man like my dad. After Debbie and I had turned in for the night we were awaken by a thump and rushed downstairs. Dad was down on his knees on the floor struggling to get to his feet. He'd tripped over an extension cord laying across the carpet. He agreed to use the walker after that so the next time (please no next time), he could pull himself up with the aid of the walker. Debbie showed him how it was done. So he started using the walker, and now at times he seems to hang onto it like he never intends to let it go. He doesn't strut anymore. Debbie and I stayed at his house weeks after the surgery (just me now - she had to go home to prepare for a trip to Asia in February - Yea!). At night, in the upstairs bedroom, I can hear the clunk, clunk of the legs of the walker striking the floor as he slowly navigates from the living room where he's stationed (rented hospital bed set up in there), to the bathroom. Then he returns to his bed, and sits there helpless until someone can lift his legs onto the bed, and there he lays, all night, all day. When he needs something, he just yells and we get it. I don't want to enable him, but I think that may be happening. How do you say no to someone you love in such a vulnerable position? His body is healing up just fine, but after such a traumatic surgery...I don't know...somethings off.
Now his routine is just laying in bed and he doesn't get up except to use the bathroom. No longer feeds the dog (although he's physically able-that's become my job), doesn't even listen to Andre Reiu --which he never went a day without pre surgery, takes his insulin and eats, sometimes, if he can manage to get up after taking the pain pills all day. He seems to be leaning on the medication more and more even though his pain level has decreased significantly. The weird thing is he didn't even want to use the pain pills when he first got home, and that was when the pain was at its worst. Now it's like he can't do without them. Like he's suffering from a form of post traumatic stress syndrome. Worries me but home health nurse and doctor, who just refilled his prescription for 3 refills, doesn't appear to be the least bit worried, even when I complained the pills were making him lethargic, and less willing to be an active participant to a new day. But then, they don't know him like his family does. These days the only time he's out of his robe is when he has a doctor's appointment. Every once in a while he'll ask someone to drive him to the store which gives me great joy because at least he's getting out of the house.
Inside my chest I feel like there's a volcano just on the verge of erupting. There must be a book or article or something that can offer some direction on what to do with all the emotions you gotta carry around during this process. I'm overwhelmed, terrified, because this is a familiar road--first the diagnosis, then the treatment, and then...I don't even want to go there right now. I don't think I'm supposed to...not before it's time anyway. But I can no longer hide behind the guise of innocence like I did with my mom and Kenny. Cancer is ugly, and mean, cruel beyond measure. My dad is at stage 3 - I've googled and now I know more. The cancer has spread to his lymph nodes --I didn't ask the doctor how many nodes are affected. I need to do that. Chemo treatments start next Wednesday, and every Wednesday for the next 7 or 8 weeks. And after treatment...what then? I want to be positive, I need to be positive. But my dad is 78 years old, and in addition to cancer, he has diabetes, and kidney disease, and heart disease. I can't breathe.
Friday, April 23, 2010
Trial & Tribs
I haven't written in quite some time. I think I've misplaced my faith in the healing powers of putting everything out there. I don't feel healed. Not to mention that it's not very nice of me to put all my negativity into the universe via this blog, but here it goes. I'm hopeful that everybody I've told about my bloggin' is no longer tuning in so now seems a good time as any to spout off. My dad was diagnosed with rectal cancer in November. It's weird how quickly things take off after an initial diagnoses.
The surgery was set for December 4Th, same day mom died. The days after surgery will be ingrained in my mind and my heart forever. They removed his rectum and rerouted everything through his stomach. Although they had him doped up with morphine and pain meds I can't even pronounce, he suffered. His memory is sketchy on the days following the surgery, but I remember. In the days since, he's learning to live his life with a new appendage, the colostomy bag that must be emptied twice a day, every day for the duration of his life. Up until yesterday, this duty was performed by my niece and I who were "trained" by the ostomy nurses at St. Joseph Hospital. Because of the red tape that is synonymous with insurance we were initially told he would only be allowed up to 20 bags a month which means he would have to empty and reuse bags to conserve. The pre-registration nurse at St. Joseph told us there was an option for getting disposable bags, however "they", I'm not sure who "they" are but I can guarantee you they're probably not dealing with the mess of having to reuse bags, disapproved of human waste being deposited in the garbage can, ergo the first option to reuse bags. Of course, we know it has to do with insurance costs. It always does. The nurse said we had to prove my dad was a candidate for the disposable bags. So let me tell you the process for emptying a bag. Supposedly for a man, he should be able to sit on the toilet and allow the bag to hang between his legs. Remove the clip from the end of the bag and allow the waste to empty into the toilet. This is how things are supposed to work. Not so in real time. One, the stoma -- the medical term for the new organ on my dad's stomach where waste is secreted, sits high on his really full tummy so when it hangs down it literally sits on his lower abdomen. Before emptying the bag, he has to remove the clip, then fold the end of the bag up so waste does not soil the end -- if waste taints the end of the bag, there is odor because that's the part exposed after applying the clip. Well regardless to whether the bag is folded up or not fecal matter always finds its way to the end of the bag. To circumvent this we were told to use wet wipes to clean off the end of the bag, which is not a pleasant task. After emptying the bag, he has to unfold the end and gently wrap it around the clip. My dad is 78 years old this January, a diabetic, which means that cleanliness is critical, and at times his right hand shakes so badly he can barely hold on to the needle to give himself a shot of insulin, let alone maneuver the colostomy bag attached to his stomach. There is no way he will be able to easily adapt this routine into his daily life, not without there being some messy moments, which would be very embarrassing and upsetting for my very proud father. And just for the record, the waste in the bag never smoothly flows from the bag to the toilet especially as it becomes more solid. After a bit of discussion with the home care nurse, it was agreed disposal bags would be more suitable for Dad. Yesterday Dad was able to change the bag in the privacy of his bathroom, by taking off the soiled bag and tossing it in the garbage, and sealing the new one to the wafer attached to his stomach. I'll tell you about the wafer later. I think that small measure of privacy and independence will go a long way to getting some normalcy back into his life, which I hope will help in not just his physical recovery, but emotional as well. We get 60 of the disposal bags. So generous. Okay, I'm done talking about this for now. But I have so much more to say.
The surgery was set for December 4Th, same day mom died. The days after surgery will be ingrained in my mind and my heart forever. They removed his rectum and rerouted everything through his stomach. Although they had him doped up with morphine and pain meds I can't even pronounce, he suffered. His memory is sketchy on the days following the surgery, but I remember. In the days since, he's learning to live his life with a new appendage, the colostomy bag that must be emptied twice a day, every day for the duration of his life. Up until yesterday, this duty was performed by my niece and I who were "trained" by the ostomy nurses at St. Joseph Hospital. Because of the red tape that is synonymous with insurance we were initially told he would only be allowed up to 20 bags a month which means he would have to empty and reuse bags to conserve. The pre-registration nurse at St. Joseph told us there was an option for getting disposable bags, however "they", I'm not sure who "they" are but I can guarantee you they're probably not dealing with the mess of having to reuse bags, disapproved of human waste being deposited in the garbage can, ergo the first option to reuse bags. Of course, we know it has to do with insurance costs. It always does. The nurse said we had to prove my dad was a candidate for the disposable bags. So let me tell you the process for emptying a bag. Supposedly for a man, he should be able to sit on the toilet and allow the bag to hang between his legs. Remove the clip from the end of the bag and allow the waste to empty into the toilet. This is how things are supposed to work. Not so in real time. One, the stoma -- the medical term for the new organ on my dad's stomach where waste is secreted, sits high on his really full tummy so when it hangs down it literally sits on his lower abdomen. Before emptying the bag, he has to remove the clip, then fold the end of the bag up so waste does not soil the end -- if waste taints the end of the bag, there is odor because that's the part exposed after applying the clip. Well regardless to whether the bag is folded up or not fecal matter always finds its way to the end of the bag. To circumvent this we were told to use wet wipes to clean off the end of the bag, which is not a pleasant task. After emptying the bag, he has to unfold the end and gently wrap it around the clip. My dad is 78 years old this January, a diabetic, which means that cleanliness is critical, and at times his right hand shakes so badly he can barely hold on to the needle to give himself a shot of insulin, let alone maneuver the colostomy bag attached to his stomach. There is no way he will be able to easily adapt this routine into his daily life, not without there being some messy moments, which would be very embarrassing and upsetting for my very proud father. And just for the record, the waste in the bag never smoothly flows from the bag to the toilet especially as it becomes more solid. After a bit of discussion with the home care nurse, it was agreed disposal bags would be more suitable for Dad. Yesterday Dad was able to change the bag in the privacy of his bathroom, by taking off the soiled bag and tossing it in the garbage, and sealing the new one to the wafer attached to his stomach. I'll tell you about the wafer later. I think that small measure of privacy and independence will go a long way to getting some normalcy back into his life, which I hope will help in not just his physical recovery, but emotional as well. We get 60 of the disposal bags. So generous. Okay, I'm done talking about this for now. But I have so much more to say.
Subscribe to:
Posts (Atom)