In an old shoebox at the bottom of a closetWe all thought this was one of the nicest photos we'd seen of Mom & Dad
Friday, February 29, 2008
Found Photos
In an old shoebox at the bottom of a closetWe all thought this was one of the nicest photos we'd seen of Mom & Dad
A Gentle Passing
At about 1:55pm today dad passed away.
He was struggling all morning, fighting the pain and the pain killers.
Gabriel, Vic & I ran out to lunch at Vic's favorite restaurant (Taco Bell) and when we came back we all checked in on him.
Dad was half asleep, breathing hard, so Gabriel made a couple phone calls, and when he checked on him again, he was no longer breathing.
He rearranged him to look more peaceful, closed his eyes, and let Connie know.
Con called the paramedics -
I was in the back bathroom still trying to put the sink back together - heard con's voice and came to check - Uncle Gabriel told me.
Yes, Uncle Gabriel blew the horn.
He got this one on all of us.
Thank you for your gentleness and sense of humour thru this.
Dad's at peace now.
Parametics pronounced him - spoke with his Doctor Itkonen, Con explained he was a DNR and had the paperwork for them.
I think Burbank emptied out it's police & fire dept to come here - about 6 or 7 guys running about.
They took down all the info, contacted the Coroner's office and gave approval to release the body.
Con contacted the Cremation Society and they should be here within the hour.
Dad is dead.
Dad is at peace.
His body is no longer hurting him.
He was struggling all morning, fighting the pain and the pain killers.
Gabriel, Vic & I ran out to lunch at Vic's favorite restaurant (Taco Bell) and when we came back we all checked in on him.
Dad was half asleep, breathing hard, so Gabriel made a couple phone calls, and when he checked on him again, he was no longer breathing.
He rearranged him to look more peaceful, closed his eyes, and let Connie know.
Con called the paramedics -
I was in the back bathroom still trying to put the sink back together - heard con's voice and came to check - Uncle Gabriel told me.
Yes, Uncle Gabriel blew the horn.
He got this one on all of us.
Thank you for your gentleness and sense of humour thru this.
Dad's at peace now.
Parametics pronounced him - spoke with his Doctor Itkonen, Con explained he was a DNR and had the paperwork for them.
I think Burbank emptied out it's police & fire dept to come here - about 6 or 7 guys running about.
They took down all the info, contacted the Coroner's office and gave approval to release the body.
Con contacted the Cremation Society and they should be here within the hour.
Dad is dead.
Dad is at peace.
His body is no longer hurting him.
A call last night
Morning all -
Last night Vic called me around 8pm
Vic: 'hey aunt boug - what ya up to?'
J: "Watching Lost"
V: "well, yea, uh, (con) mom wants to talk to you"
J: "okay...."
Con - 'Um, yea, dad's not doing well, he's throwing up.'
J: 'So, what are ya thinking?'
Con: 'You might want to head over here, cause this could be it'
J: okay....
C: 'Plan on staying the night'
J: ok.
So, Dad is still alive at this point. (not to drag out the suspence) but he's really not doing well.
Gabriel was sleeping When I got here around 9:30 - resting up for the night
Con was up, and we sat and talked a bit.
He's fighting the Ativan (anti Seizure) medication still - nighttime brings out the fighter in him.
He's still afraid to die.
He threw up a couple times before I went to bed - once with con there, and then, he seemed to know she walked into the other room and threw up again when it was just me & Vic.
J: 'Is he throwing up???'
V: 'Yup!'
We have to lift him up, cause right now he's lying back in the bed, and you don't want him to aspirate it.
Dying is not a pretty business.
Con is still talking with him, asking what he wants and getting him to respond by nodding or shaking his head.
Pretty much all the time he is making noises of pain. It's very sad.
Con's giving him the different pain medications as allowed by the doc's - so some of it is just the fighting he is doing. He is not relaxing into the pain relief. He's not ready to from the sounds of him.
His stats are still all about the same. heartbeat strong & fast (due to the lower blood pressure, due to thicker blood cause he's dehydrating)
So right now it's just waiting.
Altho - to continue with dad's acadamy award performance of scenes never nominated... He kinda sounds like the Monster from Young Frankenstein.
Just a little chuckle. But ya gotta laugh or you sit around and cry.
When I left home last night to come over here, I called a couple neighbors cause I know how they worry about me -
Cari - warned me not to speed (after checking to see that I was okay to drive) and where the local traps were currently (Thanks Cari!) Also made sure I had a book on cd or music to keep me sane. Yes, she knows me.
Strange (julie)- yelled at me for not having her come with me (ok, so the fact that I was crying and couldn't talk as I was driving & talking on the fone, maybe she had a point...) But I was okay, just couldn't talk. and when I hung up I concentrated on the book and on the driving.
did you know that people driving that route at night average 60mph? What the heck is that???
Oh well, so it goes. I'll let you know more as we hear it.
Last night Vic called me around 8pm
Vic: 'hey aunt boug - what ya up to?'
J: "Watching Lost"
V: "well, yea, uh, (con) mom wants to talk to you"
J: "okay...."
Con - 'Um, yea, dad's not doing well, he's throwing up.'
J: 'So, what are ya thinking?'
Con: 'You might want to head over here, cause this could be it'
J: okay....
C: 'Plan on staying the night'
J: ok.
So, Dad is still alive at this point. (not to drag out the suspence) but he's really not doing well.
Gabriel was sleeping When I got here around 9:30 - resting up for the night
Con was up, and we sat and talked a bit.
He's fighting the Ativan (anti Seizure) medication still - nighttime brings out the fighter in him.
He's still afraid to die.
He threw up a couple times before I went to bed - once with con there, and then, he seemed to know she walked into the other room and threw up again when it was just me & Vic.
J: 'Is he throwing up???'
V: 'Yup!'
We have to lift him up, cause right now he's lying back in the bed, and you don't want him to aspirate it.
Dying is not a pretty business.
Con is still talking with him, asking what he wants and getting him to respond by nodding or shaking his head.
Pretty much all the time he is making noises of pain. It's very sad.
Con's giving him the different pain medications as allowed by the doc's - so some of it is just the fighting he is doing. He is not relaxing into the pain relief. He's not ready to from the sounds of him.
His stats are still all about the same. heartbeat strong & fast (due to the lower blood pressure, due to thicker blood cause he's dehydrating)
So right now it's just waiting.
Altho - to continue with dad's acadamy award performance of scenes never nominated... He kinda sounds like the Monster from Young Frankenstein.
Just a little chuckle. But ya gotta laugh or you sit around and cry.
When I left home last night to come over here, I called a couple neighbors cause I know how they worry about me -
Cari - warned me not to speed (after checking to see that I was okay to drive) and where the local traps were currently (Thanks Cari!) Also made sure I had a book on cd or music to keep me sane. Yes, she knows me.
Strange (julie)- yelled at me for not having her come with me (ok, so the fact that I was crying and couldn't talk as I was driving & talking on the fone, maybe she had a point...) But I was okay, just couldn't talk. and when I hung up I concentrated on the book and on the driving.
did you know that people driving that route at night average 60mph? What the heck is that???
Oh well, so it goes. I'll let you know more as we hear it.
Thursday, February 28, 2008
Yoga - it does a body good.
Yes, even on your deathbed - yoga helps...
Seems what woulda been a deathbed, is now a day at the gym.
Here's the back story.
Dad is getting even more restless at night, and without any balance and having the shakes, he's half falling out of bed. So to stop that, Con & Gabriel secured him in using blankets, crossing his body with a blanket tightly to hold him into place.
Keep in mind his left side is the one having trouble. He's been dragging that leg for awhile.
Dad somehow, manages to maneuver his left leg above the restraining blanket. He has not been that flexible EVER that I can remember. As a child I remember helping him put on his shoes. He wore slip on's cause he couldn't reach down and tie his laces!!
He ended up on the floor in basically, a yoga Child Pose,
http://www.abc-of-yoga.com/yogapractice/childpose.asp
And now - he's much more flexible! When they helped him into the rolling chair to move him to the toilet this morning, he bent & moved much better. Not sure if it is prescribed by the doctor, but yoga seems to help...
Picture dad in the shower, trying to move stiff legged into the tub (step up, wait, your leg doesn't bend.) In a very small space (have you seen the bathroom in that house?) with a sick invalid, (shaking & stiff legged) and Con & Gabriel??
Brings to mind Gumby somehow...
Big question is where is the urine & swollen ankles coming from? Dad has not been drinking water since Monday the 25th. He still has swollen ankles.
Dr. Mark Kozloff of Ingalls Hospital did not show up on Wednesday as he said he would. As well as not showing up on Monday (due to the 20" of snow.)
3 weeks later, and dad still hasn't had follow up by his oncologist.
Thank God for Dr Itkonen - his primary care - a VERY caring doctor who Nurse Con recommends highly for South Siders...
PHOTOS NEEDED PLEASE!!
Michael has most of the old family photos - Have you started going thru them for Dad's memorial?
Anyone else - especially our south of the border relatives - if you have more recent shots, photos of Dad down in Colombia - would you be able to post them for us to download & print? Personally, I use both Snapfish & Kodak - but could sign up or find them on other photo services if you send me the link.
Seems what woulda been a deathbed, is now a day at the gym.
Here's the back story.
Dad is getting even more restless at night, and without any balance and having the shakes, he's half falling out of bed. So to stop that, Con & Gabriel secured him in using blankets, crossing his body with a blanket tightly to hold him into place.
Keep in mind his left side is the one having trouble. He's been dragging that leg for awhile.
Dad somehow, manages to maneuver his left leg above the restraining blanket. He has not been that flexible EVER that I can remember. As a child I remember helping him put on his shoes. He wore slip on's cause he couldn't reach down and tie his laces!!
He ended up on the floor in basically, a yoga Child Pose,
http://www.abc-of-yoga.com/yogapractice/childpose.asp
And now - he's much more flexible! When they helped him into the rolling chair to move him to the toilet this morning, he bent & moved much better. Not sure if it is prescribed by the doctor, but yoga seems to help...
Picture dad in the shower, trying to move stiff legged into the tub (step up, wait, your leg doesn't bend.) In a very small space (have you seen the bathroom in that house?) with a sick invalid, (shaking & stiff legged) and Con & Gabriel??
Brings to mind Gumby somehow...
Big question is where is the urine & swollen ankles coming from? Dad has not been drinking water since Monday the 25th. He still has swollen ankles.
Dr. Mark Kozloff of Ingalls Hospital did not show up on Wednesday as he said he would. As well as not showing up on Monday (due to the 20" of snow.)
3 weeks later, and dad still hasn't had follow up by his oncologist.
Thank God for Dr Itkonen - his primary care - a VERY caring doctor who Nurse Con recommends highly for South Siders...
PHOTOS NEEDED PLEASE!!
Michael has most of the old family photos - Have you started going thru them for Dad's memorial?
Anyone else - especially our south of the border relatives - if you have more recent shots, photos of Dad down in Colombia - would you be able to post them for us to download & print? Personally, I use both Snapfish & Kodak - but could sign up or find them on other photo services if you send me the link.
Wednesday, February 27, 2008
Mom / more details about dads physical condition
Just general notes re: Mom - she's still very possessive of dad. Likes to be between her boys - insisted on sitting between Dad & Gabriel when both were there able to sit.
She likes to be in the middle of everything - part of the group when people stop by.
Sunday when Aunt Linda, Judy & I were there, we got Browns Chicken to eat, and mom stood waiting because Gabriel sat in her chair - till she got the seat she wanted. Then ate like a trooper.
Lawyer is suggesting to keep mom in the house at least a month after dad passes away - so that it is not so disruptive to her - to lose dad and then to move would be tough.
on the lighter side - Gabriel calls Connie Master - she corrects him to 'Boss'(hog?)
He is the unskilled labor (and a huge help)
He's learning - getting much better.
Con's realizing how much nurses know about moving & caring for people. to reposition sick people is not easy - nurses work as a team to maneuver patients as needed.
She has to explain where he should stand, where he needs to position himself / Dad / arms legs, etc.
Bodies are heavy - I've learned that from watching the Mythbusters try to maneuver Buster (the crash test dummy) around. and if the person is incapable or fighting against what you are saying, it is not easy.
When dad sits up now, he no longer has the capability to sit on his own or to hold himself upright - he has muscle spasms.
Almost appears as if he's dancing... still got rhythm at least. (If only the rest of us had some rhythm...)
That's part of what makes Con think it has spread to his brain.
She likes to be in the middle of everything - part of the group when people stop by.
Sunday when Aunt Linda, Judy & I were there, we got Browns Chicken to eat, and mom stood waiting because Gabriel sat in her chair - till she got the seat she wanted. Then ate like a trooper.
Lawyer is suggesting to keep mom in the house at least a month after dad passes away - so that it is not so disruptive to her - to lose dad and then to move would be tough.
on the lighter side - Gabriel calls Connie Master - she corrects him to 'Boss'(hog?)
He is the unskilled labor (and a huge help)
He's learning - getting much better.
Con's realizing how much nurses know about moving & caring for people. to reposition sick people is not easy - nurses work as a team to maneuver patients as needed.
She has to explain where he should stand, where he needs to position himself / Dad / arms legs, etc.
Bodies are heavy - I've learned that from watching the Mythbusters try to maneuver Buster (the crash test dummy) around. and if the person is incapable or fighting against what you are saying, it is not easy.
When dad sits up now, he no longer has the capability to sit on his own or to hold himself upright - he has muscle spasms.
Almost appears as if he's dancing... still got rhythm at least. (If only the rest of us had some rhythm...)
That's part of what makes Con think it has spread to his brain.
The Long Stretch Home
Dad's afraid to sleep - even after getting his powerful painkiller shot, he sleeps for 20 minutes, fighting it the whole time.
He knows he's on the home stretch, but Con's not sure how much longer.
Cheryl didn't stop by yet to remove the port.
The social worker stopped by to see if dad wanted to start hospice - but Gabriel & Con feel they would do the same as them so are okay so far.
Aunt Linda called & checked in - much appreciated...
Con's heading out to the cemetery in Joliet today - Dave the bookkeeper wants everything in order - Mom's wish has always been to be buried in Joliet next to her mom & dad (they have a 3 plot space). It's close to Aunt Jerry's house and all mom's Galli relatives. I know it is well cared for, if we don't make it there to plant flowers, Ray & Aunt Jerry usually do. At both Grandma & Grandpa's and the Great's (Nonna & Nonno's)sites. They are all four buried in that cemetery.
Hey - whoever is reading this - if you could post a comment just to say hi - that'd be great. I've talked to people on the fone about it, but just want to be sure everyone is getting this.
He knows he's on the home stretch, but Con's not sure how much longer.
Cheryl didn't stop by yet to remove the port.
The social worker stopped by to see if dad wanted to start hospice - but Gabriel & Con feel they would do the same as them so are okay so far.
Aunt Linda called & checked in - much appreciated...
Con's heading out to the cemetery in Joliet today - Dave the bookkeeper wants everything in order - Mom's wish has always been to be buried in Joliet next to her mom & dad (they have a 3 plot space). It's close to Aunt Jerry's house and all mom's Galli relatives. I know it is well cared for, if we don't make it there to plant flowers, Ray & Aunt Jerry usually do. At both Grandma & Grandpa's and the Great's (Nonna & Nonno's)sites. They are all four buried in that cemetery.
Hey - whoever is reading this - if you could post a comment just to say hi - that'd be great. I've talked to people on the fone about it, but just want to be sure everyone is getting this.
Tuesday, February 26, 2008
Shower Time
Con & Gabe helped Dad shower up in the tub - today it was con's turn to be in there with him. So lots of fun getting him there & back to bed.
Dads not making eye contact when talking to people - maybe the pain killer?
Shots of pain killer - no, not able to swallow very well, so going in thru the IV
Despite being off the TPN, he's not completely dehydrated.
He's fighting despite physical deterioration.
He's very very slowly dying at this point. Fighting death.
Continues to fight everything. Brushing his teeth. the pain medication.
Up every hour last nite. Everyone asleep last night by 9:30pm, he was up at 10:15pm
up multiple times, but did manage to sleep from 5 to 8am
Must be weird dreams - cause dad wanted to go outside & try his camera.
Another time, wanted his pliers.
Cheryl (traveling Nurse) may be coming to remove the port today.
Dads not making eye contact when talking to people - maybe the pain killer?
Shots of pain killer - no, not able to swallow very well, so going in thru the IV
Despite being off the TPN, he's not completely dehydrated.
He's fighting despite physical deterioration.
He's very very slowly dying at this point. Fighting death.
Continues to fight everything. Brushing his teeth. the pain medication.
Up every hour last nite. Everyone asleep last night by 9:30pm, he was up at 10:15pm
up multiple times, but did manage to sleep from 5 to 8am
Must be weird dreams - cause dad wanted to go outside & try his camera.
Another time, wanted his pliers.
Cheryl (traveling Nurse) may be coming to remove the port today.
Monday, February 25, 2008
Tired - strong heart
Dad had another restless night last night
His body is getting weaker -but he's not giving up
All his vitals are still the same - holding steady
But he's having more problems digesting - his pills may not be working.
Con got his prescription changed to by shot - so he can have an injection and get pain relief.
His body is getting weaker -but he's not giving up
All his vitals are still the same - holding steady
But he's having more problems digesting - his pills may not be working.
Con got his prescription changed to by shot - so he can have an injection and get pain relief.
Sunday, February 24, 2008
Aunt Linda & Judy
Sunday, Aunt Linda, Judy, Vic, & Me stopped by for a visit.
We grabbed Browns chicken for dinner & I brought leftovers for Con & Gabriel to try - from my neighbor's squash festival.
Had a little confusion on the phones - Mina called to stop by on a visit (Dad's hair stylist) but Unc Gab. told her he was feeling tired & not to stop by.
But he also talked to Kathy who had helped out earlier - and told her to stop by.
She did, and took mom for a walk, but I think it irritated dad.
Oh well - now we know. We weren't sure if she was the one he was angry with - and seems that she was.
Wondering if anyone has any pictures of dad they'd like to share for his memorial. Starting to plan toward that. I found a few upstairs, but not many.
We grabbed Browns chicken for dinner & I brought leftovers for Con & Gabriel to try - from my neighbor's squash festival.
Had a little confusion on the phones - Mina called to stop by on a visit (Dad's hair stylist) but Unc Gab. told her he was feeling tired & not to stop by.
But he also talked to Kathy who had helped out earlier - and told her to stop by.
She did, and took mom for a walk, but I think it irritated dad.
Oh well - now we know. We weren't sure if she was the one he was angry with - and seems that she was.
Wondering if anyone has any pictures of dad they'd like to share for his memorial. Starting to plan toward that. I found a few upstairs, but not many.
Visit from Gaby
Very nice & helpful -
Gaby stopped by for a visit on Saturday - hung out with her dad (Gabriel) for awhile.
Gave Con a chance to go out and get some shopping done.
Dad's got a lot of fluid retention - his ankles & feet are swollen and his insulateds were too tight.
Con ran to the store(s) and found some sweats for him. Quite dashing.
Con & Gabriel had Dad up a few times - just standing.
Seems like he's getting some facial drooping on the left side and his left leg is dragging a bit. He's not walking very well - so they take him for a ride on one of the wheeled chairs to move him about.
They brought a bed down and set it up in the living room - maybe a bit more comfortable. Only up about three times last night.
Gaby stopped by for a visit on Saturday - hung out with her dad (Gabriel) for awhile.
Gave Con a chance to go out and get some shopping done.
Dad's got a lot of fluid retention - his ankles & feet are swollen and his insulateds were too tight.
Con ran to the store(s) and found some sweats for him. Quite dashing.
Con & Gabriel had Dad up a few times - just standing.
Seems like he's getting some facial drooping on the left side and his left leg is dragging a bit. He's not walking very well - so they take him for a ride on one of the wheeled chairs to move him about.
They brought a bed down and set it up in the living room - maybe a bit more comfortable. Only up about three times last night.
Friday, February 22, 2008
Better night yet
Vic got Uncle Gabriel from the airport just fine - he's staying in Burbank with Dad.
Dad decided to discontinue the TPN for right now - and had a great nights sleep for a change. Toilet break at midnight, but slept till 8am - quite the blessing!
Gabriel was dragged to Taco Bell (Vic's enticement - her favorite restaurant, but not sure if he actually ate there.
Con sounded much more positive and cheerful - lack of sleep makes people cranky and we all know how sweet she is to start (JIMMY!)
lol
Dad's been eating soup & cream of wheat cereal and baby food.
Seems like he's getting his tastebuds back - could tell it was apricot babyfood - his choice & he enjoyed it.
He still has a fair amount of fluid retention - so hopefully without the TPN that may help or maybe the Lasix will work better now. (but that's my conjecture - so many things going on in his body, who knows what effects what.)
Hospice has been discussed, but at this point they would just come in to take out the port. Con feels dad may change his mind about the TPN and this way they still have the option to go back easily.
Day by day.
Dad decided to discontinue the TPN for right now - and had a great nights sleep for a change. Toilet break at midnight, but slept till 8am - quite the blessing!
Gabriel was dragged to Taco Bell (Vic's enticement - her favorite restaurant, but not sure if he actually ate there.
Con sounded much more positive and cheerful - lack of sleep makes people cranky and we all know how sweet she is to start (JIMMY!)
lol
Dad's been eating soup & cream of wheat cereal and baby food.
Seems like he's getting his tastebuds back - could tell it was apricot babyfood - his choice & he enjoyed it.
He still has a fair amount of fluid retention - so hopefully without the TPN that may help or maybe the Lasix will work better now. (but that's my conjecture - so many things going on in his body, who knows what effects what.)
Hospice has been discussed, but at this point they would just come in to take out the port. Con feels dad may change his mind about the TPN and this way they still have the option to go back easily.
Day by day.
Thursday, February 21, 2008
Uncle Gabriel
Vic is showing off that new drivers license & is going to O'Hare to pickup Uncle Gabriel. (dad's brother)
Brave girl.
He's planning to stay with Dad in Burbank from my understanding.
Dad's doing impressions of various comedic actors - occasionally acting like rainman or a dirty rotten scoundrel. But maybe it's just our sick sense of humor - enjoy life to the end and keep laughing.
Life is definitely the silliest think we can do.
Take ourselves too seriously and all ya do is cry.
Brave girl.
He's planning to stay with Dad in Burbank from my understanding.
Dad's doing impressions of various comedic actors - occasionally acting like rainman or a dirty rotten scoundrel. But maybe it's just our sick sense of humor - enjoy life to the end and keep laughing.
Life is definitely the silliest think we can do.
Take ourselves too seriously and all ya do is cry.
Wednesday, February 20, 2008
Sleeping still better
So the anti-anxiety meds seem to be working -
Dad slept better thru the night
Con still hasn't heard back from the Oncologist - despite bad results from his lab tests
Dad slept better thru the night
Con still hasn't heard back from the Oncologist - despite bad results from his lab tests
Tuesday, February 19, 2008
Cancer doc & test results
36000 on White Blood Count
Hemoglobin is 8.6 (transfuse at 8)
Travel nurse is calling cancer doc with this today - Hopefully he will give her more info, like, put him on antibiotics or some such....
Lasix appears to be working some
Liver enzymes out of wack, but he does have liver cancer - which could be affecting his wbc
Hemoglobin is 8.6 (transfuse at 8)
Travel nurse is calling cancer doc with this today - Hopefully he will give her more info, like, put him on antibiotics or some such....
Lasix appears to be working some
Liver enzymes out of wack, but he does have liver cancer - which could be affecting his wbc
A better nights sleep
Dad's sleeping a little better - only woke up every two hours instead of every 30 to 45 minutes.
Con will be talking with the visiting nurse Cheryl about her conversations with the Oncologist -
Concerns currently are swollen feet, lack of results from the Lasix, bad sleeping habits, poor test results on potassium & such. and a few others.
Con didn't want to double call the doc - if Cheryl was unable to schedule an appt for dad with the oncologist, Con will call and schedule it.
The Onc was very short with Cheryl when she first talked to him - he answered while with a patient, so Cheryl had to call back when he actually 'had time'. DUH!
Darn Arrogant Doctors!
I spoke with a friend (Angie) who is a nun last night about dad's concerns that if he doesn't continue treatment, the Catholic church will view it as a mortal sin - suicide.
She reassured me that that is NOT the churches position.
It all goes back to quality of life.
Hospice is an option.
I did not know fully what Hospice was, and this is how I understood it - where they remove all supports except pain medication.
So they would remove TPN, tubes, etc - all outside forms of help to keep the body alive.
Medication for pain is administered not in lethal doses, but to keep the person comfortable until the body fails.
A chance for him to pass on without heroic measures.
This is fully supported by the Catholic church and if a councilor or a priest were to say it isn't, they would be lying.
But it all goes back to quality of life.
Dad's at this point is nil.
But it is up to him.
If anyone knows of a good councilor or dad requested a 'young, with-it priest' to discuss these things who would travel to Burbank to talk with him, let us know.
Helen goes to St Alberts, and she is going to check in there.
(my friend Angie lives in Milwaukee, and doesn't know anyone for sure in the area who would be good.)
Con will be talking with the visiting nurse Cheryl about her conversations with the Oncologist -
Concerns currently are swollen feet, lack of results from the Lasix, bad sleeping habits, poor test results on potassium & such. and a few others.
Con didn't want to double call the doc - if Cheryl was unable to schedule an appt for dad with the oncologist, Con will call and schedule it.
The Onc was very short with Cheryl when she first talked to him - he answered while with a patient, so Cheryl had to call back when he actually 'had time'. DUH!
Darn Arrogant Doctors!
I spoke with a friend (Angie) who is a nun last night about dad's concerns that if he doesn't continue treatment, the Catholic church will view it as a mortal sin - suicide.
She reassured me that that is NOT the churches position.
It all goes back to quality of life.
Hospice is an option.
I did not know fully what Hospice was, and this is how I understood it - where they remove all supports except pain medication.
So they would remove TPN, tubes, etc - all outside forms of help to keep the body alive.
Medication for pain is administered not in lethal doses, but to keep the person comfortable until the body fails.
A chance for him to pass on without heroic measures.
This is fully supported by the Catholic church and if a councilor or a priest were to say it isn't, they would be lying.
But it all goes back to quality of life.
Dad's at this point is nil.
But it is up to him.
If anyone knows of a good councilor or dad requested a 'young, with-it priest' to discuss these things who would travel to Burbank to talk with him, let us know.
Helen goes to St Alberts, and she is going to check in there.
(my friend Angie lives in Milwaukee, and doesn't know anyone for sure in the area who would be good.)
Monday, February 18, 2008
More Bloodwork
Dad's going in for more bloodwork today.
Con's frustrated with his oncologist - main cancer doc - who has NOT called back with results from blood tests.
Dad's seeming confused - woke Con up to tell her he was tired and wanted to lie down & go to sleep - he was lying down.
He's going back & forth between acceptance and struggle.
Con's frustrated with his oncologist - main cancer doc - who has NOT called back with results from blood tests.
Dad's seeming confused - woke Con up to tell her he was tired and wanted to lie down & go to sleep - he was lying down.
He's going back & forth between acceptance and struggle.
Sunday, February 17, 2008
17 Feb 08 Jo Report
Dad's being cantankerous.
Not listening - even after asking about it, and despite being told not to get up when attached to his IV because air could get in the system - he is being a little kid and doing it anyway.
Lots of fun.
He's allowing his impatience out again.
I was over there Saturday, managed to install the New Shower head (adjustable!) and found a handle to attach to the tub - which installed much easier (& safer I think) for him to hold onto.
Con had gotten a shower bench.
and changed the toilet seat to a nice soft cushiony one for his tushiony.
Also, brought wood and set up the sink in a new position in Mom's bathroom - but, not being a genius at plumbing, I was not able to re-plumb it. I brought home a drawing and will check it with my neighbor to confirm how to actually set it up. So the sink is there, but no water hooked up to it.
Anyone an expert??
Mom seems to be eating pretty well these days.
Last weekend when Dan & I visited, we all sat down and had Brown's chicken. Mom picked up her fork & ate like a trooper. (Con did cut the chicken to bite size pieces for her.)
She didn't eat the chicken nose (cartilage on the breast bone) despite doing it her whole life. She used to always love that... make us cringe to hear the crunch, but she enjoyed it. But this time, she didn't do it. Musta thought we were crazy offering it to her...
She enjoyed the baked beans & Tangy Coleslaw - yes - a south side thing. Tangy coleslaw - yummo!
Mom gave Helen a bit of a hard time, has been fighting her about the washroom.
I'm guessing it's a control issue - maybe she feels she has no control over anything, and tries to control this. by not controlling it... who knows.
Helen sits there with mom, and counts numbers and talks to her about her family & kids - going over the names, telling her who we are, asking mom her name, asking mom our names.
It's so sad.
Aunt Linda was talking of coming for a visit today - I hope the weather co-operates.
Con was hoping to take vic for her drivers license tomorrow, but state is closed for yet another presidents birthday.
Not listening - even after asking about it, and despite being told not to get up when attached to his IV because air could get in the system - he is being a little kid and doing it anyway.
Lots of fun.
He's allowing his impatience out again.
I was over there Saturday, managed to install the New Shower head (adjustable!) and found a handle to attach to the tub - which installed much easier (& safer I think) for him to hold onto.
Con had gotten a shower bench.
and changed the toilet seat to a nice soft cushiony one for his tushiony.
Also, brought wood and set up the sink in a new position in Mom's bathroom - but, not being a genius at plumbing, I was not able to re-plumb it. I brought home a drawing and will check it with my neighbor to confirm how to actually set it up. So the sink is there, but no water hooked up to it.
Anyone an expert??
Mom seems to be eating pretty well these days.
Last weekend when Dan & I visited, we all sat down and had Brown's chicken. Mom picked up her fork & ate like a trooper. (Con did cut the chicken to bite size pieces for her.)
She didn't eat the chicken nose (cartilage on the breast bone) despite doing it her whole life. She used to always love that... make us cringe to hear the crunch, but she enjoyed it. But this time, she didn't do it. Musta thought we were crazy offering it to her...
She enjoyed the baked beans & Tangy Coleslaw - yes - a south side thing. Tangy coleslaw - yummo!
Mom gave Helen a bit of a hard time, has been fighting her about the washroom.
I'm guessing it's a control issue - maybe she feels she has no control over anything, and tries to control this. by not controlling it... who knows.
Helen sits there with mom, and counts numbers and talks to her about her family & kids - going over the names, telling her who we are, asking mom her name, asking mom our names.
It's so sad.
Aunt Linda was talking of coming for a visit today - I hope the weather co-operates.
Con was hoping to take vic for her drivers license tomorrow, but state is closed for yet another presidents birthday.
15 Feb 08 - Dr Visit Results
Well, Dad has some new medications to take.
He's been experiencing swollen feet - so he received a diuretic -Lasix
The worry with that is it could damage his kidneys.
Normally it works for 1 to 2 hours, so he receives it a while before his TPN.
( http://en.wikipedia.org/wiki/Total_parenteral_nutrition )
He got some more pain medications - but the kind that takes a few days to start giving good relief - needs to build up in his system.
They talked about the fact it might have spread further (to his brain?) but dad did not want to have more tests done for it. Not really anything they could do for it.
The prostate cancer is not the problem. It was the one they found, but it is a very slow one - and still is not far advanced. The bad ones are in the liver and in the esophagus/stomach. Dad has had GERD (Gastroesophageal reflux disease) for years - this can lead to esophageal cancer.
Dad's looking for a few adjustments in the house - a bar above the tub to help him get in & out of the tub.
An adjustable height hand held shower sprayer.
A cushioned toilet seat.
I picked those items up at the store, now just have to install them. Anyone have a screwdriver/ drill/ saw/ time & skills??
He's been experiencing swollen feet - so he received a diuretic -Lasix
The worry with that is it could damage his kidneys.
Normally it works for 1 to 2 hours, so he receives it a while before his TPN.
( http://en.wikipedia.org/wiki/Total_parenteral_nutrition )
He got some more pain medications - but the kind that takes a few days to start giving good relief - needs to build up in his system.
They talked about the fact it might have spread further (to his brain?) but dad did not want to have more tests done for it. Not really anything they could do for it.
The prostate cancer is not the problem. It was the one they found, but it is a very slow one - and still is not far advanced. The bad ones are in the liver and in the esophagus/stomach. Dad has had GERD (Gastroesophageal reflux disease) for years - this can lead to esophageal cancer.
Dad's looking for a few adjustments in the house - a bar above the tub to help him get in & out of the tub.
An adjustable height hand held shower sprayer.
A cushioned toilet seat.
I picked those items up at the store, now just have to install them. Anyone have a screwdriver/ drill/ saw/ time & skills??
15 Feb 08 - The Jo Report
Hello all -
First time trying this new set up.
Instead of emailing a message & forgetting people or sending something ucky at a bad time or the wrong place,
I'm just gonna start updating here. Haven't used this blog in awhile, so I'll get some use out of it.
Latest on Dad:
He's going in to his regular doctor today - Dr Ipkonen.
Con's hoping he'll get some pain medication for the cancer.
Strangely enough, the cancer doctor, failed to prescribe any for that.
Dad's getting a little squirrelly -Not quite with it at times. Could be he's dehyrating,
could be the cancer. Not sure.
He's acting like he refused to let us act as kids.
Whining and bratty, doing what he is told not to do.
Currently still getting his IV during the night of the TPN (nutrition) and that is attached to a hook in the wall. Dad is sleeping in the front-room on the couch - His choice.
He will fall asleep shortly after being hooked up - around 9pm - sleep till midnight, then start waking up every half hour, attempting to get up and wander around.
Now, he's attached to the wall by the IV so this is a bad idea.
Con gets up each time & tries to convince him to go back to sleep.
He doesn't have to go to the toilet, more like confusion.
He had Con call Sid Caesar up - she did, handed him the phone, and he told Sid that Con was being mean to him and to call Susanne up for her to come take care of him. Sid asked to talk to Con.
He seemed better later, and apologized to con for being mean to her, so maybe it is just dehydration. He was arguing with her about water. He had a water cup, but kept saying he couldn't reach it (he could) or couldn't drink out of the straw - it was drowning him (it wasn't)
Con got a sippy cup for him - luckily it has oz marked on the outside - and was able to prove to him, he was getting liquid. or at least the level went down after he drank.
He's still his usual self - nicer to strangers than to us kids. So feel free to stop by for a visit.
First time trying this new set up.
Instead of emailing a message & forgetting people or sending something ucky at a bad time or the wrong place,
I'm just gonna start updating here. Haven't used this blog in awhile, so I'll get some use out of it.
Latest on Dad:
He's going in to his regular doctor today - Dr Ipkonen.
Con's hoping he'll get some pain medication for the cancer.
Strangely enough, the cancer doctor, failed to prescribe any for that.
Dad's getting a little squirrelly -Not quite with it at times. Could be he's dehyrating,
could be the cancer. Not sure.
He's acting like he refused to let us act as kids.
Whining and bratty, doing what he is told not to do.
Currently still getting his IV during the night of the TPN (nutrition) and that is attached to a hook in the wall. Dad is sleeping in the front-room on the couch - His choice.
He will fall asleep shortly after being hooked up - around 9pm - sleep till midnight, then start waking up every half hour, attempting to get up and wander around.
Now, he's attached to the wall by the IV so this is a bad idea.
Con gets up each time & tries to convince him to go back to sleep.
He doesn't have to go to the toilet, more like confusion.
He had Con call Sid Caesar up - she did, handed him the phone, and he told Sid that Con was being mean to him and to call Susanne up for her to come take care of him. Sid asked to talk to Con.
He seemed better later, and apologized to con for being mean to her, so maybe it is just dehydration. He was arguing with her about water. He had a water cup, but kept saying he couldn't reach it (he could) or couldn't drink out of the straw - it was drowning him (it wasn't)
Con got a sippy cup for him - luckily it has oz marked on the outside - and was able to prove to him, he was getting liquid. or at least the level went down after he drank.
He's still his usual self - nicer to strangers than to us kids. So feel free to stop by for a visit.
8 Feb 08 - update
8 Feb 08 - Update
Hello All -
Dad has finally been released from the hospital.
He asked Connie - okay, actually he spoke to Maruja, who called Gabriel who called Con and asked her to either hire someone or care for dad herself (and he would call back in two hours for her answer...!)
LOL
so yea, family communication at it's finest.
Anyway -
Con brought him home to Burbank - and was able to get things set up for him somewhat.
He receives the TNP (IV feeding) overnite - a visiting nurse is supposed to come & start him at 8pm and take him off at 8am. Nurse was running late, Con had it set up & ready to go when she got there at 10pm, and finished it for him at 10am. The finishing nurse ran late also, so it was good she was there.
The medications I spoke about in the last email are actually for at home. Dad's been feeling very nauseous, so Con found out how often he can take it from the pharmacist & will increase to allowable.
Vic may get her fondest wish - could be she's going to get her drivers license so she will have access to a vehicle. Sounds like Con will be in Burbank for the next couple of weeks at least.
Helen is doing a good job with mom - mom was a little freaked by all these 'new people' - just four days short of a month that day was away, and Con being there now - but she should settle back down.
Found out - Mom still likes Doritoes! and she was eating granola bars too that con offered to her as 'candy'
Dad is set up in the front room, and if anyone needs the home fone # there -
seven o eight six three six four eight nine three will get you thru.
Hello All -
Dad has finally been released from the hospital.
He asked Connie - okay, actually he spoke to Maruja, who called Gabriel who called Con and asked her to either hire someone or care for dad herself (and he would call back in two hours for her answer...!)
LOL
so yea, family communication at it's finest.
Anyway -
Con brought him home to Burbank - and was able to get things set up for him somewhat.
He receives the TNP (IV feeding) overnite - a visiting nurse is supposed to come & start him at 8pm and take him off at 8am. Nurse was running late, Con had it set up & ready to go when she got there at 10pm, and finished it for him at 10am. The finishing nurse ran late also, so it was good she was there.
The medications I spoke about in the last email are actually for at home. Dad's been feeling very nauseous, so Con found out how often he can take it from the pharmacist & will increase to allowable.
Vic may get her fondest wish - could be she's going to get her drivers license so she will have access to a vehicle. Sounds like Con will be in Burbank for the next couple of weeks at least.
Helen is doing a good job with mom - mom was a little freaked by all these 'new people' - just four days short of a month that day was away, and Con being there now - but she should settle back down.
Found out - Mom still likes Doritoes! and she was eating granola bars too that con offered to her as 'candy'
Dad is set up in the front room, and if anyone needs the home fone # there -
seven o eight six three six four eight nine three will get you thru.
5 Feb 08 update
Hi all -
Just a bit more info:
Family news - Uncle Gabriel & Aunt Pilar are supposed to fly out today - not sure if they made it out before the snow storm or not.
Dad News:
Most of this info I have gotten from Connie - Dad gave his doctor's permission to talk to her - needed for family to receive info other then thru the patient. She lucked out & the doc was making rounds as she was visiting so she found out what he was planning and let me know. Here is a semi quick synopsis:
Dad is still in the hospital. They had installed a J-tube for feeding, but after trying an adjustment, they could not get it to work, so they have pulled it out. It was for feeding. Instead, they are using a 'TPN' Cyclic - basically a bag of nutrition, that is run for 13 hours every night - via IV.
Their plan is to use this to fatten him up (or build him back up, that sounds nicer) - he will be able to do that from home. Dad is getting in touch with a visiting nurse and social worker to help him return home. Dad is hoping for a hospital bed at home to keep himself more comfortable.
Once they get him back in better shape they will begin traditional chemo on an outpatient basis.
Con's not sure if they will be able to do the first treatment before he leaves the hospital or not. But she has seen good results with the TPN as far as getting nutrition into patients before.
No definite dates have been set yet for his release or beginning chemo.
The doc has him on an anti-nausea medication that is taken under the tongue. And a liquid form of morphine.
He hasn't been eating solid food, but today he did try some cream of wheat - in a very liquid state.
Con explained to him, the TPN will fulfill his nutritional need, but normally he would still feel hungry. but with the tumor in his stomach, that would tend to cancel the hunger feeling. He responded with 'I have a tumor in my stomach??' So not quite sure what that is about.
I did go visit dad last Friday after the storm cleared out of the streets. con & vic came too - safety in numbers!
From what I hear, Mom is doing well with Helen.
That's the latest I have - please keep passing on info as you receive it.
love -
joules
Just a bit more info:
Family news - Uncle Gabriel & Aunt Pilar are supposed to fly out today - not sure if they made it out before the snow storm or not.
Dad News:
Most of this info I have gotten from Connie - Dad gave his doctor's permission to talk to her - needed for family to receive info other then thru the patient. She lucked out & the doc was making rounds as she was visiting so she found out what he was planning and let me know. Here is a semi quick synopsis:
Dad is still in the hospital. They had installed a J-tube for feeding, but after trying an adjustment, they could not get it to work, so they have pulled it out. It was for feeding. Instead, they are using a 'TPN' Cyclic - basically a bag of nutrition, that is run for 13 hours every night - via IV.
Their plan is to use this to fatten him up (or build him back up, that sounds nicer) - he will be able to do that from home. Dad is getting in touch with a visiting nurse and social worker to help him return home. Dad is hoping for a hospital bed at home to keep himself more comfortable.
Once they get him back in better shape they will begin traditional chemo on an outpatient basis.
Con's not sure if they will be able to do the first treatment before he leaves the hospital or not. But she has seen good results with the TPN as far as getting nutrition into patients before.
No definite dates have been set yet for his release or beginning chemo.
The doc has him on an anti-nausea medication that is taken under the tongue. And a liquid form of morphine.
He hasn't been eating solid food, but today he did try some cream of wheat - in a very liquid state.
Con explained to him, the TPN will fulfill his nutritional need, but normally he would still feel hungry. but with the tumor in his stomach, that would tend to cancel the hunger feeling. He responded with 'I have a tumor in my stomach??' So not quite sure what that is about.
I did go visit dad last Friday after the storm cleared out of the streets. con & vic came too - safety in numbers!
From what I hear, Mom is doing well with Helen.
That's the latest I have - please keep passing on info as you receive it.
love -
joules
30 Jan 08 update
He's still in the hospital.
There is some leakage around the tube.
Connie said the tube is working, they tested and food is going in, but they are also getting leakage around the tube - the doctors are discussing what to do about it. This could cause more problems - it is stomach acid that is leaking from that hole.
Gabriel & Pilar got to town Tues to visit - for one to two weeks
Staying with Gaby right now - Christy picked them up from the airport.
Dad from what Connie tells me feels hopeful and is ready to get out of the hospital and back home.
Michael is back in Florida
Mom is being cared for in Burbank by Helen (I think) a woman who cared for a friend of Michael's.
Just a brief one to say whats happened so far.
There is some leakage around the tube.
Connie said the tube is working, they tested and food is going in, but they are also getting leakage around the tube - the doctors are discussing what to do about it. This could cause more problems - it is stomach acid that is leaking from that hole.
Gabriel & Pilar got to town Tues to visit - for one to two weeks
Staying with Gaby right now - Christy picked them up from the airport.
Dad from what Connie tells me feels hopeful and is ready to get out of the hospital and back home.
Michael is back in Florida
Mom is being cared for in Burbank by Helen (I think) a woman who cared for a friend of Michael's.
Just a brief one to say whats happened so far.
13 Jan 08 - Dad in Hospital
Onto the news we received Sunday:
Michael called while I was over at the neighbor & left a message that I 'needed to call him back'
He also called Connie - she spoke with him.
I called Susanne, and from all the conversations, this is the basics of what is going on.
Dad is in the hospital since Friday the 11th.
Susanne
or Michael
have the contact info (possibly Connie)
His cancer has progressed - the tumors have not gotten smaller, so he will be discontinuing treatment.
Michael is planning on coming in later this week to go over things with Dad, and get mom set up - either in a nursing home here until he can find a place for her down in Florida, or, he's hoping to set her up with in-home care with a woman who used to care for his good friend Ray's mom. (you met Ray, he had the going away party for Michael)
I'm not sure of dad's wishes in this matter, I have not spoken to him directly, but rather than leave anyone in the dark, I thought I would let you all know this info.
He is down in Ingalls hospital - the same hospital Connie works at.
http://www.ingallshealthsystem.org/locations/harvey.asp
Susanne thinks he is going to get a feeding tube installed Monday into his stomach (not thru his throat, he will still be able to speak)
She did speak to him on Sunday.
Mom is currently being cared for in her house in Burbank by a woman who has helped dad out before daysitting. She lives by Midway airport, and is actually the Realtor who is helping to sell his properties.
That's the gist of what I have heard.
Vicki has emailed Gabriel & Pilar.
I feel communication & information dispersal is a good thing. Gives everyone a chance to decide what they would like to do.
Michael called while I was over at the neighbor & left a message that I 'needed to call him back'
He also called Connie - she spoke with him.
I called Susanne, and from all the conversations, this is the basics of what is going on.
Dad is in the hospital since Friday the 11th.
Susanne
or Michael
have the contact info (possibly Connie)
His cancer has progressed - the tumors have not gotten smaller, so he will be discontinuing treatment.
Michael is planning on coming in later this week to go over things with Dad, and get mom set up - either in a nursing home here until he can find a place for her down in Florida, or, he's hoping to set her up with in-home care with a woman who used to care for his good friend Ray's mom. (you met Ray, he had the going away party for Michael)
I'm not sure of dad's wishes in this matter, I have not spoken to him directly, but rather than leave anyone in the dark, I thought I would let you all know this info.
He is down in Ingalls hospital - the same hospital Connie works at.
http://www.ingallshealthsystem.org/locations/harvey.asp
Susanne thinks he is going to get a feeding tube installed Monday into his stomach (not thru his throat, he will still be able to speak)
She did speak to him on Sunday.
Mom is currently being cared for in her house in Burbank by a woman who has helped dad out before daysitting. She lives by Midway airport, and is actually the Realtor who is helping to sell his properties.
That's the gist of what I have heard.
Vicki has emailed Gabriel & Pilar.
I feel communication & information dispersal is a good thing. Gives everyone a chance to decide what they would like to do.
Moving & beginning.
Due to some family politics, I decided to start a new blog for these posting about dad.
Backstory is as follows -
Dad was diagnosed with prostate cancer.
Probably one to 2 years ago.
He had already planned a trip to Colombia with Mom, so checked with the doc, and the doc said, it's fine, we'll treat when you return.
When he got back, the doctor had retired.
So, he found a new doc but when he went in finally, turns out he also had cancer in the liver, stomach & esophagus.
Backstory is as follows -
Dad was diagnosed with prostate cancer.
Probably one to 2 years ago.
He had already planned a trip to Colombia with Mom, so checked with the doc, and the doc said, it's fine, we'll treat when you return.
When he got back, the doctor had retired.
So, he found a new doc but when he went in finally, turns out he also had cancer in the liver, stomach & esophagus.
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