We slept well. Doubled John's morphine and still give it every hour. He isn't "waking up" or responding although when I talk to him, he'll raise his eyebrows and his breathing changes some. Since he can't swallow the applesauce, we're back to the original pill atavin {sp} crushed and in a drop of water under his tongue, instead of his regular seizure med in applesauce. The morphine is liquid. We're cutting back on the other two agitation drugs.
He drank quite a bit yesterday so his cath bag was at 500 ml for the third day.
There was a little "scare" in getting his morphine yesterday. On Tuesday, they put in another order for it because we were going to run out. Our Dr. Chemo, who is our prescribing physician still, faxed the order to our Publix at 5:30. The pharm was running behind, and when I asked the pharmacist about it at 6 p.m., he hadn't realized it was liquid. He didn't have any. Lake Ella Publix did. He'd have to fill out paperwork to get the Hospice order transfered there but "if I have to call every Publix in the State of Florida, I'll get you some tomorrow." Everything was approved and Daddy picked it up on Wednesday from Lake Ella. Only he didn't pass the test. Didn't know John's address [PO Box number], did know our phone number, didn't know something else....but they let him have it. Glad I didn't have to go crazy on them!!
love John's pharmacist
Thursday P.M.
Giving the morphine every hour and a half. Have given 2 doses of the drops to help with congestion.
This afternoon, John had a couple of coughing fits where he opened his eyes. Almost immediately they rolled back in his head. He will often wiggle his foot and this morning only, raised his eyebrows a couple of times. He's been non-responsive all day. The night on-call nurse from last Wednesday came again today. Our regular nurse was in a meeting all day. She helped me change John's bandage, and I'm constantly amazed at the changes in the bulge.
Daddy was our only visitor today, but we've had lots of phone calls. Haven't wanted to talk to people. Nothing new to say.
Tomorrow is John's birthday.
Thursday, February 17, 2011
Wednesday, February 16, 2011
Johnny Applesauce
I missed one of John's morphine doses because I slept through it. Around 5 a.m., John got restless and was having leg spasms. I gave him a dose, rubbed his head, arms, hand, and chest for about an hour, and so did Sharon. Another dose and some calming. Eventually he fell asleep and I crashed hard. Sharon and Mama stayed up and had coffee, showers, got dressed. Sharon left for work, but not before taking pictures of me and John in bed.
It was a good, quiet day. The home health aide gave John his bath. We discovered compression points on his elbow and wrist. Only red at this point, but tender. Between his middle and ring fingers on his right hand is a red spot, and when Ida washed between his fingers at that spot, John pulled away and grimaced. This is the arm he doesn't use any more. She was extra careful rinsing and drying his right arm.
I slept a lot while John napped. It was good. There were several calls, and Mama answered the phone. Daddy came for lunch and again later in the day. Gail dropped off fried chicken livers for dinner.
The nurse checked John and said his blood pressure was 160/100, lungs clear, urine has sediment and will be clear and then pink. She brought a huge syringe
John's parents sent him a beautiful bouquet of flowers with three large mylar balloons for his birthday on Friday. In the middle of the afternoon, John opened his eyes and tried to talk for about an hour. He gestured, huffed, made faces. It was fun to communicate with him. I told him about my nephew, Marshall, and other things going on. I put a "donut" shaped bean-filled cushion under his hurting elbow. Mama was standing on the other side of the bed when I lifted John's arm to place the cushion. He glared at her and she said, "I'm not the one doing it." He would look across the room and close his right eye to see how well he could focus with the left, something he used to do to watch tv or things at a distance.
I think all the action wore him out because for the next three hours, it was impossible to wake him. We tried everything: wet rag, putting his good arm in the air, shaking him gently, raising and lowering the bed. We'd get one spoonful of applesauce with meds in him and he'd fall asleep. I called Hospice to let them know we're having a hard time getting him to swallow the applesauce. The nurse answering the phone said it would be ok for tonight and that our primary nurse would call tomorrow with advice. We've also doubled the morphine doses because at the end of the hour, you can tell when it wears off. Getting up every hour tonight will be rough. But you do what you have to.
Don't know if his alertness today was the "burst of energy" people get right before they die. Consensus is that he is hanging on for his birthday Friday.
It was a good, quiet day. The home health aide gave John his bath. We discovered compression points on his elbow and wrist. Only red at this point, but tender. Between his middle and ring fingers on his right hand is a red spot, and when Ida washed between his fingers at that spot, John pulled away and grimaced. This is the arm he doesn't use any more. She was extra careful rinsing and drying his right arm.
I slept a lot while John napped. It was good. There were several calls, and Mama answered the phone. Daddy came for lunch and again later in the day. Gail dropped off fried chicken livers for dinner.
The nurse checked John and said his blood pressure was 160/100, lungs clear, urine has sediment and will be clear and then pink. She brought a huge syringe
John's parents sent him a beautiful bouquet of flowers with three large mylar balloons for his birthday on Friday. In the middle of the afternoon, John opened his eyes and tried to talk for about an hour. He gestured, huffed, made faces. It was fun to communicate with him. I told him about my nephew, Marshall, and other things going on. I put a "donut" shaped bean-filled cushion under his hurting elbow. Mama was standing on the other side of the bed when I lifted John's arm to place the cushion. He glared at her and she said, "I'm not the one doing it." He would look across the room and close his right eye to see how well he could focus with the left, something he used to do to watch tv or things at a distance.
I think all the action wore him out because for the next three hours, it was impossible to wake him. We tried everything: wet rag, putting his good arm in the air, shaking him gently, raising and lowering the bed. We'd get one spoonful of applesauce with meds in him and he'd fall asleep. I called Hospice to let them know we're having a hard time getting him to swallow the applesauce. The nurse answering the phone said it would be ok for tonight and that our primary nurse would call tomorrow with advice. We've also doubled the morphine doses because at the end of the hour, you can tell when it wears off. Getting up every hour tonight will be rough. But you do what you have to.
Don't know if his alertness today was the "burst of energy" people get right before they die. Consensus is that he is hanging on for his birthday Friday.
Tuesday, February 15, 2011
every breath
The night went well. I got up to give John his meds every couple of hours. He was restless only once. His mom woke us with her call. There were many calls for John today. Dave from Atlanta, Tim, his dad, Michelle, and Georgia called last night.
The nurse checked in and said John's lungs are clear, his blood pressure high, quite a bit of blood in the catheter, and she expects "the call" from us any time.
John takes a few breaths then doesn't breathe for ten seconds or so. Then he'll take a big breath again. She said the intervals of not breathing will increase. He has fussed about his catheter some. He discovered it in the night. He'll move his leg a lot if the cath is in the wrong position. He takes his crushed meds in applesauce quite well.
I've moved the morphine from every 3 hours to an hour and a half because he needs it sooner. One of the "Grandmas" made a cake and they both brought it over. Havana Pastor dropped by for a few minutes, and three teacher friends came by after school. I napped and read a little while John was awake. His eyes are slits if open at all. I swab out his mouth and he likes to squeeze the sponge for water. Yesterday he wasn't able to suck the straw to drink his water. But he swallows well.
Mama spent the night, and will again, along with Sharon. We had local Chinese for dinner. A nice break.
Couldn't wake him up for his 9 p.m. meds. Sleeping soundly, even breathing.
I'm sure there's more from the day, but I'm going to bed.
The nurse checked in and said John's lungs are clear, his blood pressure high, quite a bit of blood in the catheter, and she expects "the call" from us any time.
John takes a few breaths then doesn't breathe for ten seconds or so. Then he'll take a big breath again. She said the intervals of not breathing will increase. He has fussed about his catheter some. He discovered it in the night. He'll move his leg a lot if the cath is in the wrong position. He takes his crushed meds in applesauce quite well.
I've moved the morphine from every 3 hours to an hour and a half because he needs it sooner. One of the "Grandmas" made a cake and they both brought it over. Havana Pastor dropped by for a few minutes, and three teacher friends came by after school. I napped and read a little while John was awake. His eyes are slits if open at all. I swab out his mouth and he likes to squeeze the sponge for water. Yesterday he wasn't able to suck the straw to drink his water. But he swallows well.
Mama spent the night, and will again, along with Sharon. We had local Chinese for dinner. A nice break.
Couldn't wake him up for his 9 p.m. meds. Sleeping soundly, even breathing.
I'm sure there's more from the day, but I'm going to bed.
Monday, February 14, 2011
days
Called the nurse to come again Sunday afternoon. The meds weren't keeping John calm anymore. Started the morphine and another drug for restlessness. It's helping. His mouth is filmy and his eyes hardly open. He does nod his head and give his opinion about tastes and funny things. His customer, Shirley, brought over chicken salad, fruit salad, brownies, and green beans. He ate a good bit. Sharon came over, and Mama is staying the night.
Got up in the night Sunday to give him meds. He slept rather well. At one point he put his arm around me and opened his eyes like any normal night. He was especially aware.
Monday morning, today, I called the nurse for a catheter. It's wearing out John and me trying to get pull-ups on him. I also asked the nurse to have the walker picked up. She got out a med for the "death rattle" to help calm the congestion at the end.
just in case
She explained again the procedure they go throught to "pronounce" and when I wasn't in the room, she told Mama I shouldn't be left alone with John anymore. The shock of finding him gone would be too much for me alone. Our neighbor and church friend, Ruby, is here with me while Mama goes home and changes. Mama will stay through Wed. night and Sharon will come then. I have an erie feeling Wed will be "the day." Don't know why. John's b'day is Friday. His mom called yesterday and broke down on the phone and had to go. Mama broke down today trying to tell me I couldn't be alone.
I went to my class Valentine party. The sub has totally rearranged everything, but I didn't even care. The kids were glad to see me, and pretty well behaved. I gave them their cards, a pen, a hug, ate a little snack, collected my things and was exhausted.
It's more surreal than ever.
Got up in the night Sunday to give him meds. He slept rather well. At one point he put his arm around me and opened his eyes like any normal night. He was especially aware.
Monday morning, today, I called the nurse for a catheter. It's wearing out John and me trying to get pull-ups on him. I also asked the nurse to have the walker picked up. She got out a med for the "death rattle" to help calm the congestion at the end.
just in case
She explained again the procedure they go throught to "pronounce" and when I wasn't in the room, she told Mama I shouldn't be left alone with John anymore. The shock of finding him gone would be too much for me alone. Our neighbor and church friend, Ruby, is here with me while Mama goes home and changes. Mama will stay through Wed. night and Sharon will come then. I have an erie feeling Wed will be "the day." Don't know why. John's b'day is Friday. His mom called yesterday and broke down on the phone and had to go. Mama broke down today trying to tell me I couldn't be alone.
I went to my class Valentine party. The sub has totally rearranged everything, but I didn't even care. The kids were glad to see me, and pretty well behaved. I gave them their cards, a pen, a hug, ate a little snack, collected my things and was exhausted.
It's more surreal than ever.
Saturday, February 12, 2011
roller coaster
Today is Saturday. Yesterday was Friday. Rough Thursday night, early start to Friday. Back to bed after b'fast. Home health lady came. We enjoyed her very much. She spent a long time working on getting the gunk out of John's hair. Marvin visited again. John always enjoys when he comes. Mama came, then Miss Kathy from school, and her sister, Pastor from Havana and his wife. She made chicken and dumplins and brought a warm bowl for our dinner.
And it began again. Fidgets, mumbling, leg jerks. Took a pill, then another. Fought the battle for three hours. I called Hospice at 11:30 and within 10 minutes, John was finally asleep. The nurse came and took out a relaxer from our "comfort kit." Gave John 2 doses during the night. He fussed with his legs again during the night. Has now slept almost all day. It's 4 p.m. Saturday.
"Grandma" Causey from down the road brought him a burger and Valentine balloon, and me a flower to put in the yard. Mama is back, and Sharon came to cut John's hair, but he's been asleep the whole time. John's "pull-ups" are not holding the flood of urine. Mama and I changed his clothes and sheets. His home health lady would laugh at the time we had getting the sheets changed. Keeping the relaxer in his system so he'll stay relaxed.
PooPotpouri is a great product for "that" smell. I put it in the bedside potty and it covers odors.
**********************************************************************************
John finally woke up tonight around 6:30.
wide awake
He fussed around until time for his med. With it he ate a hamburger, banana, cookie, and diet coke. Mama picked up the namebrand Depends, and it worked much better tonight. He lets out such a flood that the pull-ups are not holding it all. Hopefully these will work better.
John has spoken very few words today. Even awake he isn't talking voluntarily. The responses he does give are quiet, short, and his usual weird language. His eyes focus for the most part, but when he's about to drift off the sleep, the blank stare comes back. He hasn't even tried to get out of bed today. This is the first day he's never gotten up. Mama and I decided to not put pajama bottoms back on him. It wears out John and me trying to get them under his bottom after having done the same with the pull-ups. He hasn't complained or acknowledged that he notices. Will talk with the nurse about getting him a catheter. She offered it as an option for "one day" and I know John hates them, but it would save a lot of grief for us both. The nurse can break the news to him!
It's been a quiet, sort of sad day. Another major marker passed.
And it began again. Fidgets, mumbling, leg jerks. Took a pill, then another. Fought the battle for three hours. I called Hospice at 11:30 and within 10 minutes, John was finally asleep. The nurse came and took out a relaxer from our "comfort kit." Gave John 2 doses during the night. He fussed with his legs again during the night. Has now slept almost all day. It's 4 p.m. Saturday.
"Grandma" Causey from down the road brought him a burger and Valentine balloon, and me a flower to put in the yard. Mama is back, and Sharon came to cut John's hair, but he's been asleep the whole time. John's "pull-ups" are not holding the flood of urine. Mama and I changed his clothes and sheets. His home health lady would laugh at the time we had getting the sheets changed. Keeping the relaxer in his system so he'll stay relaxed.
PooPotpouri is a great product for "that" smell. I put it in the bedside potty and it covers odors.
**********************************************************************************
John finally woke up tonight around 6:30.
wide awake
He fussed around until time for his med. With it he ate a hamburger, banana, cookie, and diet coke. Mama picked up the namebrand Depends, and it worked much better tonight. He lets out such a flood that the pull-ups are not holding it all. Hopefully these will work better.
John has spoken very few words today. Even awake he isn't talking voluntarily. The responses he does give are quiet, short, and his usual weird language. His eyes focus for the most part, but when he's about to drift off the sleep, the blank stare comes back. He hasn't even tried to get out of bed today. This is the first day he's never gotten up. Mama and I decided to not put pajama bottoms back on him. It wears out John and me trying to get them under his bottom after having done the same with the pull-ups. He hasn't complained or acknowledged that he notices. Will talk with the nurse about getting him a catheter. She offered it as an option for "one day" and I know John hates them, but it would save a lot of grief for us both. The nurse can break the news to him!
It's been a quiet, sort of sad day. Another major marker passed.
Friday, February 11, 2011
boxers or briefs? depends
woo hoo
We slept until 4:30 a.m. then until 6:30. It's 9 a.m. now and it's already been a full day. At 6:30, John needed to potty. He sat and sat again but nothing happened. When I started pulling up his pants, he touched them and said something was *jibberish*.
I felt of them and they were wet.
oh gosh....here we go
We changed into dry stuff. I asked him if he'd like to try one of the depends we had from Christmas. He said we might better.
He got back in bed and needed to go again. I could tell an urgency so we got him up quickly, and as he was pulling down his pants, he was saying oh, oh, oh. He was urinating a steady stream as he stood there. Luckily, almost every drop landed in the depends.
Cleaned him up again, got back in bed, ate 2 pieces of toast and rolled over to sleep. I started on my valentine cards for the kids but could hardly keep my eyes open. Took a nice nap. John's still snoring.
waiting for the home health lady to call
We slept until 4:30 a.m. then until 6:30. It's 9 a.m. now and it's already been a full day. At 6:30, John needed to potty. He sat and sat again but nothing happened. When I started pulling up his pants, he touched them and said something was *jibberish*.
I felt of them and they were wet.
oh gosh....here we go
We changed into dry stuff. I asked him if he'd like to try one of the depends we had from Christmas. He said we might better.
He got back in bed and needed to go again. I could tell an urgency so we got him up quickly, and as he was pulling down his pants, he was saying oh, oh, oh. He was urinating a steady stream as he stood there. Luckily, almost every drop landed in the depends.
Cleaned him up again, got back in bed, ate 2 pieces of toast and rolled over to sleep. I started on my valentine cards for the kids but could hardly keep my eyes open. Took a nice nap. John's still snoring.
waiting for the home health lady to call
Thursday, February 10, 2011
two week notice
John slept until 4:30 this morning! He slept most of the day.
A lady from the Dept. of Revenue came to audit and certify the sale of his business, another Hospice nurse made a follow-up visit, Havana pastor, Sarah from school, and Mama and
Daddy all came by today. Plus, the hospital bed was delivered. I put it next to our bed. Now I can be in the same room with John during the night. He's taken only one muscle relaxer today.
His eyes aren't focusing on much and he's urinated once. He's tried 3 times unsuccessfully.
victory on the 4th try
The Pastor had another good suggestion. If I start John in the bed with the rails up, he won't wonder later why I start putting them up. If that's the way at the beginning, there won't be a change later. John only complained about the rails once during the tries to urinate. He would sit on the pot for 5 minutes, get back in bed for 2 minutes, get up again to try. After the second time of trying to get up with the rail in the way, he shook it and asked why. I didn't answer him, just put it down and helped him up.
For me, there will be two dreaded markers. The first is when he can't say "I love you" anymore. In the past week, he has said it correctly about 60% of the time. When he messes up, it's "Good morning" or "Thank you". Most of the time he knows he's said it wrong, and will grin or roll his eyes. I'll say, "Yeah, that, too."
The other marker is when he won't remember my name. He's called me Mom several times, but it's usually when he's tired. One time I was trying to help him do something and he said, "Mom, Mom, Mom." I replied, "Laura." He said, "I meant please, please, please."
good answer
A lady from the Dept. of Revenue came to audit and certify the sale of his business, another Hospice nurse made a follow-up visit, Havana pastor, Sarah from school, and Mama and
Daddy all came by today. Plus, the hospital bed was delivered. I put it next to our bed. Now I can be in the same room with John during the night. He's taken only one muscle relaxer today.
His eyes aren't focusing on much and he's urinated once. He's tried 3 times unsuccessfully.
victory on the 4th try
The Pastor had another good suggestion. If I start John in the bed with the rails up, he won't wonder later why I start putting them up. If that's the way at the beginning, there won't be a change later. John only complained about the rails once during the tries to urinate. He would sit on the pot for 5 minutes, get back in bed for 2 minutes, get up again to try. After the second time of trying to get up with the rail in the way, he shook it and asked why. I didn't answer him, just put it down and helped him up.
For me, there will be two dreaded markers. The first is when he can't say "I love you" anymore. In the past week, he has said it correctly about 60% of the time. When he messes up, it's "Good morning" or "Thank you". Most of the time he knows he's said it wrong, and will grin or roll his eyes. I'll say, "Yeah, that, too."
The other marker is when he won't remember my name. He's called me Mom several times, but it's usually when he's tired. One time I was trying to help him do something and he said, "Mom, Mom, Mom." I replied, "Laura." He said, "I meant please, please, please."
good answer
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