This will come off as snotty & snide.. If you get offended then you do. I'm not going to apologize. My frustration level has hit it's peak. Maybe this will be good maybe it will end up being a train wreck, but here goes.
I am DONE being criticized for doing the absolute best that I can in taking care of my parents. I have recently been informed that my parents' information shouldn't be out for everyone to read, that I write the blogs for attention, & that I'm flat out doing a shitty job taking care of them.
Here's the deal, My folks KNOW about this blog. They SUPPORT this blog. This is a fast way to update EVERYONE instead of making a million phone calls to let everyone know how they're doing & listen to them stutter as they try to find some sort if genius answer. There is NO genius answer. There is NO 'right' answer. This is merely what is going on in my mom & dad's life. I am NOT doing this without their permission, I wouldn't DREAM of it.
Some people are very private. My folks believe that if their information helps someone else, than it was worth it. Even if it's ONLY ONE person. I imagine people have stumbled upon my blog while searching answers on information for chemo. This is NOT a medical website, this is the true life happenings of what my mom has gone & is going through.
This is also information on what my dad has gone through as well. His mystery illness that we still do NOT have a diagnosis for. Someone in California could be reading this & say, "Hey my dad had that, he passed away but he had THIS!" I get an email telling me their story & have my dad's doctor's check it out & we could FINALLY have that desperate answer that we've been searching for. Is it a long shot? YES! But we're quickly running out of options with my dad. So to those who think it's too much to put out there. This is why. Yes they know about it.
Now onto the whole attention thing... Seriously? I can think of a million other things that I'd want attention or kudos for than taking care of my parents. I wouldn't wish this on anyone. It is unbelievable HELL watching your parents be ill in front of you. Watching them go from active healthy adults to shells of who they used to be. If I REALLY wanted the attention, I'd be making individual phone calls to discuss and beat the proverbial dead horse.
And on to the last accusation of me not taking good care of my parents. I am NOT a Nurse, I am NOT even REMOTELY in the medical field. My folks do NOT want a home healthcare nurse. That leaves me. I see very few people willing to come and visit and even fewer coming to actually help take care of them with me. A lot of people won't even call & DEPEND on this blog so they are not put in the situation of trying to find SOMETHING 'right' to say. Exactly what DO you say to someone who openly admits that she's dying? What DO you say to someone who says, "No I'm not feeling well today." I'm sorry. That's a pretty short conversation. Many won't talk about what is going on in their lives because they suddenly feel as though it's insignificant compared to what my folks are going through. Yanno, Hearing your 'insignificant' stuff makes my folks FEEL NORMAL!!! There are NO miracle words to say right now. There never will be.
I guess in short I'm saying, if you don't like something I'm doing, come to me with it. Do not run your mouths about me to other people. Better yet, offer to help or say, "Hey, here's an idea." There is NO book on how to properly take care of your parents. I have asked & asked again if anyone knows of any caretaker classes so that *I* can GET BETTER at taking care of them. Right now I'm doing the absolute best that I can. Don't like it? Offer to help. Chances are, you won't be turned down.
If you don't like the blogs then don't read them. It's that simple.
Here's the only absolute thing that I can promise you. If you are going to say something nasty about me taking care of my parents, their blog, or anything of the like, you will NOT like my response. At this point, I do NOT have time to sit around and think about what everyone else will think when I post something. If anything offends you, this happens to be YOUR problem.
All of this being said, If you've offered to help, it's appreciated. If you've called & talked about insignificant stuff, it's appreciated. If you've prayed for my folks, it's appreciated. If you've come to see them, it's really appreciated.
~Lisa
This is the link to their new blog. This way, if you don't like it, you can't just click on it & see, you have to be approved. NEW BLOG
Monday, June 6, 2011
Saturday, June 4, 2011
She's Going To Try Again.
Dr. Sriratna called yesterday & told mom that he wants to do a 3 day chemo. Monday, Tuesday, & Wednesday mom will receive chemo. Then she'll have a month off (I believe that's how he said it, if I'm wrong I'll correct it later today). I honestly think that 3-5 month prognosis scared her. I'm all for her doing & continuing chemo unless, it makes her sick like it did last time.
Here comes more heartwrenching possibly bad news. Mom has been saying for a few weeks that her pain meds are not helping her back & right hip. (She has degenerative disc disease) She's had numerous back surgeries to try and help with the discs that are more or less falling apart. I've noticed her struggling a little bit more as she tries to stand, lay down, sit down, etc. I said, "Mom what's going on?" She said, "My meds aren't working. Nothing is working." I said, "It's ok mom, it's probably just the chemo making you feel worse." I am pretty sure I was wrong. She is having no side effects from the chemo that she had almost 2 weeks ago, yet the pain is still there.
Side story...It was around 7 am & I was sitting out in the garage talking to Mike. It hit me.. slowly but it hit. I'm wondering if the cancer hasn't spread to her bones. I mentioned it to Mike & he said, "Maybe." I have since done a ton of research on Stage IV Lung Cancer & Bone Pain. After reading & reading some more it is fairly common for Lung Cancer to spread to the bone. This lessens the length of life. As I discussed this with mom she had already thought of that. I asked what would happen on her autopsy? What would they put for her cause of death? Stage IV Lung Cancer? Bone Cancer? Fallopian Tube Cancer? All 3? She said, "Since my cancer started out in my Fallopian Tubes that would be considered the cause of death unless something catastrophic happens."
*biiiig deeeeepp breath*
I'm glad that my mom is so open to talking about everything because if I wasn't allowed to talk to her about it I would most likely be a basket case by now. I can talk to many people about it, but she's going through it. I'm taking notes in my head about everything. How this happened, how that happened. She is using some of the information that she has from my aunt & gramma's deaths. I guess maybe I'm doing the same thing? I'm unsure.
I still say that all of this is happening too fast. I would like for mom to get a test done to see if it has in fact gone to her bones but she says, "No, I already know I'm dying, and I already know the cause, you will get all the information from the autopsy." I'm perfectly fine with this because she's right, why in the world would/should she go through another test when we already know the outcome? I digress...
Moving on to dad.. He's doing ok. Not great, but ok. He has a Dr appointment Monday w/ the neuro. We are interested in seeing what she has to say since there is some improvement with his functions. She was completely against letting him try this Parkinson's medicine. We're hoping that she ups it just a little bit. Then, with any hope he'll do ok.
I think this is all for now, hopefully everything goes well on Monday. Will blog after their appointments unless something else comes up!
Here comes more heartwrenching possibly bad news. Mom has been saying for a few weeks that her pain meds are not helping her back & right hip. (She has degenerative disc disease) She's had numerous back surgeries to try and help with the discs that are more or less falling apart. I've noticed her struggling a little bit more as she tries to stand, lay down, sit down, etc. I said, "Mom what's going on?" She said, "My meds aren't working. Nothing is working." I said, "It's ok mom, it's probably just the chemo making you feel worse." I am pretty sure I was wrong. She is having no side effects from the chemo that she had almost 2 weeks ago, yet the pain is still there.
Side story...It was around 7 am & I was sitting out in the garage talking to Mike. It hit me.. slowly but it hit. I'm wondering if the cancer hasn't spread to her bones. I mentioned it to Mike & he said, "Maybe." I have since done a ton of research on Stage IV Lung Cancer & Bone Pain. After reading & reading some more it is fairly common for Lung Cancer to spread to the bone. This lessens the length of life. As I discussed this with mom she had already thought of that. I asked what would happen on her autopsy? What would they put for her cause of death? Stage IV Lung Cancer? Bone Cancer? Fallopian Tube Cancer? All 3? She said, "Since my cancer started out in my Fallopian Tubes that would be considered the cause of death unless something catastrophic happens."
*biiiig deeeeepp breath*
I'm glad that my mom is so open to talking about everything because if I wasn't allowed to talk to her about it I would most likely be a basket case by now. I can talk to many people about it, but she's going through it. I'm taking notes in my head about everything. How this happened, how that happened. She is using some of the information that she has from my aunt & gramma's deaths. I guess maybe I'm doing the same thing? I'm unsure.
I still say that all of this is happening too fast. I would like for mom to get a test done to see if it has in fact gone to her bones but she says, "No, I already know I'm dying, and I already know the cause, you will get all the information from the autopsy." I'm perfectly fine with this because she's right, why in the world would/should she go through another test when we already know the outcome? I digress...
Moving on to dad.. He's doing ok. Not great, but ok. He has a Dr appointment Monday w/ the neuro. We are interested in seeing what she has to say since there is some improvement with his functions. She was completely against letting him try this Parkinson's medicine. We're hoping that she ups it just a little bit. Then, with any hope he'll do ok.
I think this is all for now, hopefully everything goes well on Monday. Will blog after their appointments unless something else comes up!
Thursday, June 2, 2011
Mom & Dad's Dr. Appointment w/ the GP
This really should just be titled dad's appointment. Mom didn't go because she wasn't feeling well. She couldn't even remember why she was going. She thought it was for a check up & she said, "I've had enough check ups!" Dad & I got in the van and left. I had to pick up an rx for her & they didn't do it right. She's calling this morning to complain.
They already had dad in a room when I got back to where he was. I said, "Dad, will he be a few minutes I have got to pee!" He said, "Yes, he should be." He was wrong.. I was gone literally 2 minutes and Dr. Jani was in the room with him already! LOL!
He started asking questions about the form that he needed to fill out. As we talked dad said that it felt like they needed to up his Parkinson's meds. He said, "They seem to work for about 6 hours and then they don't." Dr. Jani raised an eye brow. He looked at me kind of questioning if I agreed that the meds were working. I said, "Yes, but they are wearing out too early. He is doing GREAT on them!" I said, "He doesn't stumble, stutter, and his memory seems to be a bit better." I said, "HE LAUGHS!! It's been so long since he's laughed!" Dr. Jani said that he wasn't convinced that dad had Parkinson's & wasn't ready to give him that official diagnosis. He said, "If you do have Parkinson's than you are showing in an Atypical way." He said, "On the other hand, if someone gave me medicine for Parkinson's it wouldn't work for me, so the fact that you are having improvement is proof that there is something neurological going on." *nods* We know this.
Then came the rough topic. My mom. I said, "Mom is obviously not here. She wasn't feeling well but also couldn't remember why she made the appointment, if it was for a check up or what." Then dad started in.. "She went to the Cancer Center yesterday and they gave her 2 bags of fluid (he held his hands up to show Dr. Jani how big the bags were) while exclaiming how big the bags were." Dad said, "She spent the past week in bed, she's lost 14 lbs, they've given her 3-5 months to live." I interjected and said, "Daddy, that's only if she stops chemo." Dad said, "If it makes her sick she's done".. his face contorted. I jumped up to stand by him. Within seconds he was sobbing. Dr. Jani said, "I'm sorry sir, I'm really sorry sir." Through the tears dad said, "She's sick and I can't take care of her. I can't take this from her." I looked up at the ceiling & rubbed dad's back. Dr. Jani was rubbing the other side of dad. He said, "Sir, she's been fighting this for so long, she's done so well!!" Dad cried harder. I looked over at Dr. Jani & his eyes were filled with tears. He took his glasses off & said, "Sir you're making me cry!" Dad apologized for breaking down and crying. Dr. Jani said, "It's all right, all of this is hard." I looked at Dr. Jani & said, "A year from November will be 40 years that they've been married." He shook his head, it wasn't a no, it wasn't a yes, it was more of an "I understand" shake. (I hope that makes sense.)
Dr. Jani said, "We'll get that blood test for you." Dad thanked him & the nurse came in within a few seconds. Dad tried to stand up out of the chair & he fell right back down. The nurse and I both grabbed for him. I'll have to check his arms this morning to see if I scratched him. I was trying to lessen his fall. He stumbled a little bit and the nurse looked him in the eye & said, "Paul are you ok?" He said, "Yeah, am ok." She became more stern & said, "Are you sure?" He said, "Yeah."
We got his blood work & did the normal trip to Wal-Mart after any type of appointment & came home.
*insert numbness*
A few days ago I felt as though I couldn't stop crying. The past few days I'm so incredibly numb. I see all of this, I don't cry. I feel sympathy and sadness, but I can't cry. It sort of pisses me off because I feel cold hearted. In any other circumstance I would've been bawling right along with dad. I just couldn't. I don't know if I wouldn't let myself or what. I think this is the most difficult. All through out life I could NEVER see my mom cry & me not join in with her. Going through a 1/2 a box of tissues would've been nothing if mom & I are both crying. Now I just can't. I can't relax enough I guess. I'm numb. I feel like a robot. I have stuff to do & I don't have time to cry. I don't have time to do anything but make sure that my folks are ok. I'm fine with this. I don't mind taking care of them at all. I see their daily struggles with that I also see their daily triumphs too. I digress.
This was dad's appointment yesterday. Mom did ok yesterday. She was out of the bed most of the day. Then she was up late too. She is amazed at how much better she feels with fluids. I really need to find a caretaker class. I feel like I should've known that she was dehydrated. I should know all of this stuff. I just don't.
Until later today or tomorrow....
They already had dad in a room when I got back to where he was. I said, "Dad, will he be a few minutes I have got to pee!" He said, "Yes, he should be." He was wrong.. I was gone literally 2 minutes and Dr. Jani was in the room with him already! LOL!
He started asking questions about the form that he needed to fill out. As we talked dad said that it felt like they needed to up his Parkinson's meds. He said, "They seem to work for about 6 hours and then they don't." Dr. Jani raised an eye brow. He looked at me kind of questioning if I agreed that the meds were working. I said, "Yes, but they are wearing out too early. He is doing GREAT on them!" I said, "He doesn't stumble, stutter, and his memory seems to be a bit better." I said, "HE LAUGHS!! It's been so long since he's laughed!" Dr. Jani said that he wasn't convinced that dad had Parkinson's & wasn't ready to give him that official diagnosis. He said, "If you do have Parkinson's than you are showing in an Atypical way." He said, "On the other hand, if someone gave me medicine for Parkinson's it wouldn't work for me, so the fact that you are having improvement is proof that there is something neurological going on." *nods* We know this.
Then came the rough topic. My mom. I said, "Mom is obviously not here. She wasn't feeling well but also couldn't remember why she made the appointment, if it was for a check up or what." Then dad started in.. "She went to the Cancer Center yesterday and they gave her 2 bags of fluid (he held his hands up to show Dr. Jani how big the bags were) while exclaiming how big the bags were." Dad said, "She spent the past week in bed, she's lost 14 lbs, they've given her 3-5 months to live." I interjected and said, "Daddy, that's only if she stops chemo." Dad said, "If it makes her sick she's done".. his face contorted. I jumped up to stand by him. Within seconds he was sobbing. Dr. Jani said, "I'm sorry sir, I'm really sorry sir." Through the tears dad said, "She's sick and I can't take care of her. I can't take this from her." I looked up at the ceiling & rubbed dad's back. Dr. Jani was rubbing the other side of dad. He said, "Sir, she's been fighting this for so long, she's done so well!!" Dad cried harder. I looked over at Dr. Jani & his eyes were filled with tears. He took his glasses off & said, "Sir you're making me cry!" Dad apologized for breaking down and crying. Dr. Jani said, "It's all right, all of this is hard." I looked at Dr. Jani & said, "A year from November will be 40 years that they've been married." He shook his head, it wasn't a no, it wasn't a yes, it was more of an "I understand" shake. (I hope that makes sense.)
Dr. Jani said, "We'll get that blood test for you." Dad thanked him & the nurse came in within a few seconds. Dad tried to stand up out of the chair & he fell right back down. The nurse and I both grabbed for him. I'll have to check his arms this morning to see if I scratched him. I was trying to lessen his fall. He stumbled a little bit and the nurse looked him in the eye & said, "Paul are you ok?" He said, "Yeah, am ok." She became more stern & said, "Are you sure?" He said, "Yeah."
We got his blood work & did the normal trip to Wal-Mart after any type of appointment & came home.
*insert numbness*
A few days ago I felt as though I couldn't stop crying. The past few days I'm so incredibly numb. I see all of this, I don't cry. I feel sympathy and sadness, but I can't cry. It sort of pisses me off because I feel cold hearted. In any other circumstance I would've been bawling right along with dad. I just couldn't. I don't know if I wouldn't let myself or what. I think this is the most difficult. All through out life I could NEVER see my mom cry & me not join in with her. Going through a 1/2 a box of tissues would've been nothing if mom & I are both crying. Now I just can't. I can't relax enough I guess. I'm numb. I feel like a robot. I have stuff to do & I don't have time to cry. I don't have time to do anything but make sure that my folks are ok. I'm fine with this. I don't mind taking care of them at all. I see their daily struggles with that I also see their daily triumphs too. I digress.
This was dad's appointment yesterday. Mom did ok yesterday. She was out of the bed most of the day. Then she was up late too. She is amazed at how much better she feels with fluids. I really need to find a caretaker class. I feel like I should've known that she was dehydrated. I should know all of this stuff. I just don't.
Until later today or tomorrow....
Subscribe to:
Posts (Atom)