Early Friday morning after I gave John his liquid meds, I tried to reposition his head a bit because he had started to lean over. I put the head of his bed down some, and he began to gag and cough, although not aware of what was going on. Mama grabbed me a mouth swab, and I raised the bed. It all cleared up, but I was scared. What if it happened again and I "killed" him??? The next dose I gave slower and kept a close eye on his reaction. Our home health aide arrived to bathe him and I was hesitant to put John through it. I was afraid he'd gag again or his arm/hand would be hurting. I was exhausted. Getting up every hour, half-hour, hour and a half was getting to me. I'd sleep hard between doses but with lots of interruptions.
His breathing was loud and close to sounding like his normal snore, and yet not.
The aide felt of John and thought he had a fever. Sure enough. His head was hot and face flushed. The thermometer read 102. Our nurse walked in and found me in flux about his bath. They both said it would help John feel better and cool him off. All went well until they turned him on his side to wash his back. He stopped breathing and when he was trying to breathe, it sounded like he was choking. I was a nervous wreck!! They worked quickly and got him on his back. He breathed better. They repositioned him with a pillow under one side and ice packs in six places around his body. His temp was now up to 103. We continued to wash him with cool water. His cath emptied 500 ml again.
The Hospice ladies could tell I was stressed and at my limit. The nurse said she would try to get me a crisis care nurse/continuous care until the end. Since he had a fever, his heart rate was 179, and very little air was actually getting into his lungs, she could justify constant care.
She couldn't claim "caretaker fatigue" as a reason for continuous care. The nurse's job is to get the patient comfortable and then leave. They can't just stay and stay.
John was breathing clearly since they repositioned him. I stayed in the room with him all the time now. Mama and Sharon were with me. A little later, we got the call that a crisis care nurse would be here at 4 p.m. and be relieved by another at 7 p.m. The second nurse would stay all night. We counted and verified pills and ml's of meds. John's breathing was hard but regular. Heartbeat/pulse 120+. Nothing in the cath. Temperature coming down. You could see the rapid heartbeat vibrating in his midsection.
John's brother sent him pictures of the kids for his birthday. The package came pretty early this morning. I told him "happy birthday" several times during the day.
I ate in the kitchen while the nurse sat with John. They will now dispense meds, wipe him with cool rags, monitor everything to give me a break. It was a weird feeling of freedom.
The second nurse came and the changing of the nurses took place; counting meds, giving info. They both told me there was a chance the request for them to be there would be denied. She would definitely stay for the night, but tomorrow could be a different story. After much discussion, we decided John's insurance would cover their service.
I dozed in bed while the nurse sat at the foot of my bed and used her computer. I hope she was playing cards or something fun. She said that people in John's condition with a few imminent symptoms could go for days. But I can't. I can't imagine days more of this for him or me.
Mama had been with us for about a week, and everyone was exhausted.
Midnight came and went. It was officially the day after his birthday. His breaths dropped from 16 per minute to 11. Around one a.m., the nurse said, "Here we go." John's breaths slowed, became more shallow, and I could hear gurgling between breaths. The sound came from deep within him. It was awful.
1:15 Mama came to the doorway. She got Sharon. The nurse started packing up her computer, notebook, and paperwork.
fewer breaths
I started counting John's breaths at some point, and made it to 65. I had my left hand under the back of his neck but I couldn't look at him. Every breath was with effort. I thought for sure every breath was his last. At 1:24, she pronounced him gone. There was one sharp breath that startled me. I yanked my hand away and maybe laughed....not sure...at my own jumping. What a jokester to the end.
I asked the nurse if she was positive that was the last breath and she assured me it was. His body may keep making noises but his heart had definitely stopped. John's biggest fear was for them to think he was dead but he really wasn't. He must have seen that episode on 'House.' He wanted me to be absolutely positive he was gone when they said it.
The nurse told me to do what I said I was going to at this time, and that was to go to the other end of the house while she took care of everything. I was shaking all over.
Mama put on a pot of coffee while Sharon talked more to the nurse. The funeral home was called and they said they'd be there within 30 minutes. small town service
The nurse closed the bedroom door and did her thing. A little while later, Sharon came out with a garbage bag. It had the catheter, bag, and bedpad. I told Sharon I'd take it to the outside trash can. The funeral home guys arrived, dressed in suits and ties, looking a little sleepy. I had to walk around the hurst to get to the trash. surreal. It was here for John.
I could hear the nurse telling Sharon and Mama to take care of the linens so I wouldn't have to deal with them. She brought in the left-over meds and destroyed them in kitty litter. We again had to sign to verify the count and that they were destroyed. Sharon bagged and trashed the linens.
A couple of cups of coffee later, I went to the extra bedroom where Sharon had been, and she and Mama slept in the living room. I slept hard, and when I woke up at one point, a heavy, heavy feeling set in on my chest when I 'remembered.' But I went back to sleep.
The day has been weirdly quiet. It's like everyone knows to be silent. One phone call, no visits. Sharon and I went to the funeral home to finalize paperwork. Daddy saw Sharon's car there while on the way to my house so he stopped.
John should be taken to Gainesville on Monday, and they'll let me know that he made it. Eventually he'll be taken to FSU for research.
We got lunch at Harvey's Deli. Mama finally went home after how many days here.......??.......Sharon is spending tonight. I called John's parents first this morning. Gave Tim an hour or so because of the time difference.
Sharon and I talked about the memorial service and wrote the obit. Facebook has a lot of wonderful posts about John/Dennis.
I'm sure I will think of more details and I'll add them. It's still very weird and unreal. I'm ready to be by myself and process.
Saturday, February 19, 2011
Thursday, February 17, 2011
Thursday morning
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.
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.
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.
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