At least he did yesterday. When Meg, Nate, Ev and I went to visit Dad after church yesterday, he seemed really good. Sitting up in his wheelchair, very alert and bright eyed, breathing sounded good, and no oxygen. While we were visiting, he made a statement like: "You can't always tell how things are going to work out. I always thought I would die before Mom. Now it looks like it might be the other way around." I wasn't sure exactly what information he had, so I just mostly let him talk on that subject. I did ask him if he had thought about his care if Mom were to pass away before him. After he ascertained that I was not asking him to commit to a permanent arrangement right then and there, he admitted that he liked the idea of what Grandpa Peycke had done, staying with different children.
Later, I asked Mom if she had been talking more with Dad about her cancer. She said she had because a friend had visited Dad and brought up the subject. When the friend realized that Dad didn't know about any of it, he suggested Dad ask Mom. He did ask and Mom did tell. I don't know how much Dad remembers day to day about it. Like this morning, when he called Mom five times at home, asking her to bring bananas. And making plans to take her out to breakfast. At least he's mostly sweet in his dementia. :) He was still pretty off when we visited him this afternoon. Mom was there too and she seemed especially down. As I told the kids in the truck, this is just a hard, sad part of their lives.
Monday, May 31, 2010
Saturday, May 29, 2010
Weekend
Yesterday Nate, Ev and I headed over to the folks' in the morning. Nate mowed and Ev blew. Grandma was pleased. :) We talked some about getting her banking set up online. She doesn't know how much money she has. :( Because of morning yardwork and my work schedule for the day, I didn't get over to see Dad. I left a message with Mom asking for a report, but she never called me back.
This morning, Dad left a message on my phone, looking for his wallet. That seems to be his new thing: He needs to get his wallet. Karis, Meg, Ev and I went over to visit him this evening. He looked great! He did have two coughing spells while we were there, but his breathing sounds so much better. He carried on a conversation without getting out of breath. He told us about his swallowing exercises and about his physical therapy exercises. He had eaten most of his dinner. And he didn't ask for his wallet. :)
This morning, Dad left a message on my phone, looking for his wallet. That seems to be his new thing: He needs to get his wallet. Karis, Meg, Ev and I went over to visit him this evening. He looked great! He did have two coughing spells while we were there, but his breathing sounds so much better. He carried on a conversation without getting out of breath. He told us about his swallowing exercises and about his physical therapy exercises. He had eaten most of his dinner. And he didn't ask for his wallet. :)
Thursday, May 27, 2010
Meanwhile, Back at the Ranch...er, Hospital
Dad is still struggling with his pneumonia. It's still there in the x-ray, still there in his labored breathing, wheezing, coughing, and out-of-breath speech. When I went to see Dad Wednesday evening, he couldn't remember much of his day. He couldn't remember if Mom had been by or not. (She had been in the morning.) He couldn't remember if he had gone for physical therapy. (He had not due to an a.m. plummet in blood pressure.) He was very interested in the Weather Channel and the reports of hail in Denver and flooding in St. Louis and KC. He knew me when I came in and he looked great. He'd had a shower and shampoo and was sitting up in a freshly made bed. He was drinking a can of Ensure, indicative of not eating dinner.
And now for a funny Dad story. His mind can go in and out during the same conversation, even the same sentence. The other day when I was visiting, Dad was telling me about who had come to see him. Lou and Peggy (my in-laws). Lou and Gerrie (old and dear friends). Jerry (church friend). Then Dad named some man he had worked with at the plant years and years ago. I thought, "Oh boy. Here we go." I said something like, "You have had really good co-workers over the years, haven't you?" He agreed and we moved on to talk about something else. Later, I was relating this to Mom and she said, "Oh yes. That man called the house and he went to visit Dad." I laughed so hard! Here I am thinking he's gone off to LaLa Land and Dad's just telling me what really happened. :)
And now for a funny Dad story. His mind can go in and out during the same conversation, even the same sentence. The other day when I was visiting, Dad was telling me about who had come to see him. Lou and Peggy (my in-laws). Lou and Gerrie (old and dear friends). Jerry (church friend). Then Dad named some man he had worked with at the plant years and years ago. I thought, "Oh boy. Here we go." I said something like, "You have had really good co-workers over the years, haven't you?" He agreed and we moved on to talk about something else. Later, I was relating this to Mom and she said, "Oh yes. That man called the house and he went to visit Dad." I laughed so hard! Here I am thinking he's gone off to LaLa Land and Dad's just telling me what really happened. :)
Wednesday, May 26, 2010
And Answers
*Exactly what stage is the cancer? Is it in the liver?
The cancer is Stage 4. It is not in the liver, just colon and lungs.
*Would surgery to remove the colon cancer now help ease Mom's pain on down the road? Not curative, but maybe palliative?
*Would taking chemo to shrink the tumor make Mom more comfortable on down the road?
Nope.
*Are there any stats on life expectancy with chemo? As opposed to the 6-8 mos. without?
Maybe extend life expectancy to a year.
*Planning--What to expect as Mom dies from this disease? What kind of care to plan for?
Varies.
Mom seems pretty set on not pursuing any treatment. Makes sense to me.
The cancer is Stage 4. It is not in the liver, just colon and lungs.
*Would surgery to remove the colon cancer now help ease Mom's pain on down the road? Not curative, but maybe palliative?
*Would taking chemo to shrink the tumor make Mom more comfortable on down the road?
Nope.
*Are there any stats on life expectancy with chemo? As opposed to the 6-8 mos. without?
Maybe extend life expectancy to a year.
*Planning--What to expect as Mom dies from this disease? What kind of care to plan for?
Varies.
Mom seems pretty set on not pursuing any treatment. Makes sense to me.
Questions
After talking to Dave and a couple of siblings, I have questions. I'm waiting for a call back from Dr. Kleinbaum, hoping to find out:
*Exactly what stage is the cancer? Is it in the liver?
*Would surgery to remove the colon cancer now help ease Mom's pain on down the road? Not curative, but maybe palliative?
*Would taking chemo to shrink the tumor make Mom more comfortable on down the road?
*Are there any stats on life expectancy with chemo? As opposed to the 6-8 mos. without?
*Planning--What to expect as Mom dies from this disease? What kind of care to plan for?
*Exactly what stage is the cancer? Is it in the liver?
*Would surgery to remove the colon cancer now help ease Mom's pain on down the road? Not curative, but maybe palliative?
*Would taking chemo to shrink the tumor make Mom more comfortable on down the road?
*Are there any stats on life expectancy with chemo? As opposed to the 6-8 mos. without?
*Planning--What to expect as Mom dies from this disease? What kind of care to plan for?
Tuesday, May 25, 2010
Oncologist Visit
Mom and I went to see Dr. Kleinbaum at 4:30 today. He told us that the tests showed Mom's cancer has spread to her lungs. Because the cancer is not contained, surgery is no longer an option. Dr. K told Mom her two remaining options are 1) try to shrink the cancer with oral chemo, or 2) do nothing. He gave an average time remaining of six to eight months.
I think Mom is in shock. She is happy that surgery is out. She is happy that Dr. K didn't tell her she has to take chemo. She completely missed that he gave her an average life expectancy. When I explained it to her, she said wonderingly: "It's like being on Death Row and I have a date. We'll see if he is right."
I'll find a good hospice care service. We need to plan how to care for Dad. I feel flattened.
I think Mom is in shock. She is happy that surgery is out. She is happy that Dr. K didn't tell her she has to take chemo. She completely missed that he gave her an average life expectancy. When I explained it to her, she said wonderingly: "It's like being on Death Row and I have a date. We'll see if he is right."
I'll find a good hospice care service. We need to plan how to care for Dad. I feel flattened.
Post Script to Monday
Mom called to say her visit with Dad was not so good. She stayed for a few hours in the afternoon and said Dad was in and out mentally. Seemed clear, then crazy talk. I'm sorry she didn't get the good visit. :(
Doctor's Thoughts
When we were leaving Dad's room yesterday, I stopped by the nurses' station to ask about the doctor. I had heard there was one, but had never seen him. I asked if he could give me a call. Dr. Sharpless did call and graciously gave me an update on Dad's condition. Dr. S is concerned that Dad sounds wheezier, has increased coughing, and that he is not eating. He has ordered a chest x-ray for today to check on the pneumonia and will consult with Dr. Xang, the pulmonologist. He is putting Dad on some steroids. He is also ordering a swallow test to see if Dad is aspirating when he eats/drinks. Vitals are still good, just not seeing progress as hoped.
Once again, I am thankful for good medical care for my parents! I love that every person I have seen at this extended care hospital treats my dad like a valuable person. Yesterday, we couldn't get the tube to stay in Dad's nose with his oxygen. I called for someone to help, and the lady who came in gently adjusted the cannula, then commented on Dad's pretty blue eyes. You know how when someone is kind to your children, it is like a kindness to you? Turns out it's the same way with aging parents.
Once again, I am thankful for good medical care for my parents! I love that every person I have seen at this extended care hospital treats my dad like a valuable person. Yesterday, we couldn't get the tube to stay in Dad's nose with his oxygen. I called for someone to help, and the lady who came in gently adjusted the cannula, then commented on Dad's pretty blue eyes. You know how when someone is kind to your children, it is like a kindness to you? Turns out it's the same way with aging parents.
Monday, May 24, 2010
Kything
Remember "kything" from the Madeline L'Engle books? It was something like telepathy, communicating without words, an intense empathy, sort of symbiotic, communing. Here's a picture of it.
(The photo is from ICU last week. I just figured out how to get pictures from my phone to my computer today. I am a technological genius.)
(The photo is from ICU last week. I just figured out how to get pictures from my phone to my computer today. I am a technological genius.)
Much Better Monday
Ev and I visited Grandpa this morning. He was so much better than yesterday! He was sleeping when we went in, but roused up and knew who we were right away. He asked for his teeth and I also put in his hearing aids, which I was happy to find in the box on his bedside table.
Dad seemed eager to visit and only fell asleep once while we were there. He asked Ev what she had been doing. He mentioned Gayle and Mark coming to visit next week. (Well, he called them Mark and Gwen and had the arrival date mixed up with this week, but still, he had the right idea.)
I mentioned that I had spoken with Ruth and that Matthew was about to graduate. Dad said they had received an announcement. I asked if Dad had any favorite verses or words of wisdom he would want to share with Matthew. His mind immediately went to Isaiah 26:3, which he quoted for us: Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Then Dad wished he had his Bible, but thought it was at home. Ev quickly retrieved it from the nightstand along with his glasses and Dad looked up the verse.
He wasn't satisfied with his Bible's version of the verse and said he preferred the sound of the KJV. Grandpa's words for Matthew: "If you stick with that verse, you can't get much better than that." Then he also quoted John 3:17, "For God sent not his Son into the world to condemn the world; but that the world through him might be saved." He was thinking it was the verse that came right after Is. 26:3 and felt that it added so much to the passage.
Lunch came and Dad ate a few bites and drank some iced tea. Lots of coughing. The physical therapist came in and recognized Dad from last year. I don't think it is a good thing for the hospital staff to recognize you. I do hope he will get Dad up and about.
Dad seemed eager to visit and only fell asleep once while we were there. He asked Ev what she had been doing. He mentioned Gayle and Mark coming to visit next week. (Well, he called them Mark and Gwen and had the arrival date mixed up with this week, but still, he had the right idea.)
I mentioned that I had spoken with Ruth and that Matthew was about to graduate. Dad said they had received an announcement. I asked if Dad had any favorite verses or words of wisdom he would want to share with Matthew. His mind immediately went to Isaiah 26:3, which he quoted for us: Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Then Dad wished he had his Bible, but thought it was at home. Ev quickly retrieved it from the nightstand along with his glasses and Dad looked up the verse.
He wasn't satisfied with his Bible's version of the verse and said he preferred the sound of the KJV. Grandpa's words for Matthew: "If you stick with that verse, you can't get much better than that." Then he also quoted John 3:17, "For God sent not his Son into the world to condemn the world; but that the world through him might be saved." He was thinking it was the verse that came right after Is. 26:3 and felt that it added so much to the passage.
Lunch came and Dad ate a few bites and drank some iced tea. Lots of coughing. The physical therapist came in and recognized Dad from last year. I don't think it is a good thing for the hospital staff to recognize you. I do hope he will get Dad up and about.
Sunday, May 23, 2010
Sunday
As we drove towards church today, I warned the children I would be practicing bad parenting. I was planning to drop them off for sunday school and go to visit Dad. They asked, "Why is that bad parenting?" So I had to explain the deal about parents dropping their kids off for church when they don't go themselves, sort of do-as-I-say-not-as-I-do.
Meg and Karis really wanted to come with me to visit their Grandpa, so after dropping off Nate and Ev, away we went. The girls looked awfully cute in their yellow gowns and blue gloves. Dad was eating his breakfast when we walked in. Yea for eating! It soon became evident that Dad's hearing aids were not in, even though he said they were. I found one on his bedside table. I couldn't find the other until Meg pointed it out on the floor. A little later, I stepped on the battery. They work so much better with batteries. I don't know why they were in such disarray. I asked to speak with Dad's nurse when we came in, but she never appeared.
It took Dad a while to realize he had visitors. He said he thought Mom came in earlier, but it turned out to be a nurse. And he said it was especially confusing because he couldn't remember Mom's name, but then he did. "Carrie." Oh boy. Dad didn't have coffee on his breakfast tray and said he would like some. When I went out to find some, he told Karis and Meg that his wife had gone to get him some coffee. I was telling Dad about the christian school high school graduation we had attended the day before. When I told him about a friend of Karis' college plans, he said, "Yes, she came by and told me about that."
Still lots and lots of coughing. Dad willingly showed the girls how he uses the breathing thing that is supposed to help break up the congestion. It's nice that he doesn't seem especially agitated or resistant, just confused and sick. Umm, that is a pretty pathetic attempt at optimism.
P.S.--I should add that Mom thought Dad seemed much improved this afternoon when she went to visit.
Meg and Karis really wanted to come with me to visit their Grandpa, so after dropping off Nate and Ev, away we went. The girls looked awfully cute in their yellow gowns and blue gloves. Dad was eating his breakfast when we walked in. Yea for eating! It soon became evident that Dad's hearing aids were not in, even though he said they were. I found one on his bedside table. I couldn't find the other until Meg pointed it out on the floor. A little later, I stepped on the battery. They work so much better with batteries. I don't know why they were in such disarray. I asked to speak with Dad's nurse when we came in, but she never appeared.
It took Dad a while to realize he had visitors. He said he thought Mom came in earlier, but it turned out to be a nurse. And he said it was especially confusing because he couldn't remember Mom's name, but then he did. "Carrie." Oh boy. Dad didn't have coffee on his breakfast tray and said he would like some. When I went out to find some, he told Karis and Meg that his wife had gone to get him some coffee. I was telling Dad about the christian school high school graduation we had attended the day before. When I told him about a friend of Karis' college plans, he said, "Yes, she came by and told me about that."
Still lots and lots of coughing. Dad willingly showed the girls how he uses the breathing thing that is supposed to help break up the congestion. It's nice that he doesn't seem especially agitated or resistant, just confused and sick. Umm, that is a pretty pathetic attempt at optimism.
P.S.--I should add that Mom thought Dad seemed much improved this afternoon when she went to visit.
Saturday, May 22, 2010
Saturday
Just spoke with Mom. Dad is talking out of his head and hallucinating today. And he fell while trying to get up from a chair without assistance. Solara does not provide sitters. What to do, what to do.
Friday, May 21, 2010
Friday Report
I got off work early today, and zipped over to visit Dad. Mom was there for her second visit of the day. Dad appeared content to be where he was and seemed pretty aware. His breathing was labored and even talking seemed to get him out of breath. He's not eating more than a few bites of each meal, since yesterday morning.
Mom seems good, but tired.
Mom seems good, but tired.
Thursday, May 20, 2010
Thursday Thrills
Dad is safely ensconced in the lovely long-term hospital. He seems to know where he is, why he's there, and is pretty pleased about it. He does sound really wheezy and does not have an appetite. He also is complaining of a pain in his right shoulder area. You know it hurts if he is mentioning it. The nurse asked what he usually takes for pain. Hah! I explained that he grew up in The Depression and served in WWII; he doesn't take anything for pain.
Mom had her PET scan today. Great technician and Mom handled it well. We had a tasty bowl of soup at Panera afterwards. :) No more appointments for Mom until Tuesday with the oncologist and Wednesday with the surgeon. She made it through the marathon. I think she is very tired.
A bright spot: When I called this evening to tell her Dad's new room number, she had just had a good visit with Aunt Helen. I'm sure they giggled like schoolgirls and enjoyed hearing each other's voices. My favorite quote Mom shared:
"Ann, you shouldn't go to the doctor. They are sure to find something wrong with you." -- Aunt Helen
Mom had her PET scan today. Great technician and Mom handled it well. We had a tasty bowl of soup at Panera afterwards. :) No more appointments for Mom until Tuesday with the oncologist and Wednesday with the surgeon. She made it through the marathon. I think she is very tired.
A bright spot: When I called this evening to tell her Dad's new room number, she had just had a good visit with Aunt Helen. I'm sure they giggled like schoolgirls and enjoyed hearing each other's voices. My favorite quote Mom shared:
"Ann, you shouldn't go to the doctor. They are sure to find something wrong with you." -- Aunt Helen
Wednesday, May 19, 2010
Medical News
Dr. Nish came by while I was still in Dad's room and said Dad's heart is stable. He said they are still watching Dad because any time there is something wrong with another organ or body system, it stresses the heart. He observed that since Dad's heart is weakened from previous damage, there is a smaller reserve or margin there for extra stress.
I still have never seen Dr. Lopez in real life. He is the attending physican for Dad while he is in the hospital. I called his office this morning on my way to get Mom and he called right back. He said they have identified the bacteria in Dad's blood and it is one he had last year. Pseudo something maybe? Anyway, they are trying different antibiotics on the bacteria culture now to see which one is the most effective, then they will start the antibiotic on Dad. Dr. Lopez said he would call me if anything new developed and I thought, "Yeah, yeah."
But he called this afternoon to say the pulmonologist wants Dad to have 3 weeks on antibiotics, so he will likely be moved to Solara. Yea for Solara! Dad will really think he's moved from hell to heaven now. I missed a call from the case worker, so I'll let you know more when I hear back from her.
I asked Dr. Lopez if the antibiotics could be administered at home. He said yes, depending on the frequency needed and other factors. If Dad does not do well in Solara, we can investigate that option. Frankly, as long as he's doing okay, it is nice to have him taken care of while Mom and I work through her appointments. We can reassess next week after we have treatment options for Mom.
Mom had her CT scan in the morning, then went home to recupe and nap. She visited Dad by herself in the afternoon. (I went home to nap too.) He had just had a shower and shampoo. He combed his own hair. :) An OT came in and had him sit on the edge of the bed and put his socks on. The sitter was still there and Mom liked having her.
We go tomorrow for Mom's PET scan, then will be done with appointments until Tuesday. Whew!
I still have never seen Dr. Lopez in real life. He is the attending physican for Dad while he is in the hospital. I called his office this morning on my way to get Mom and he called right back. He said they have identified the bacteria in Dad's blood and it is one he had last year. Pseudo something maybe? Anyway, they are trying different antibiotics on the bacteria culture now to see which one is the most effective, then they will start the antibiotic on Dad. Dr. Lopez said he would call me if anything new developed and I thought, "Yeah, yeah."
But he called this afternoon to say the pulmonologist wants Dad to have 3 weeks on antibiotics, so he will likely be moved to Solara. Yea for Solara! Dad will really think he's moved from hell to heaven now. I missed a call from the case worker, so I'll let you know more when I hear back from her.
I asked Dr. Lopez if the antibiotics could be administered at home. He said yes, depending on the frequency needed and other factors. If Dad does not do well in Solara, we can investigate that option. Frankly, as long as he's doing okay, it is nice to have him taken care of while Mom and I work through her appointments. We can reassess next week after we have treatment options for Mom.
Mom had her CT scan in the morning, then went home to recupe and nap. She visited Dad by herself in the afternoon. (I went home to nap too.) He had just had a shower and shampoo. He combed his own hair. :) An OT came in and had him sit on the edge of the bed and put his socks on. The sitter was still there and Mom liked having her.
We go tomorrow for Mom's PET scan, then will be done with appointments until Tuesday. Whew!
Whacky Wednesday
And I do mean whacky.
Tuesday night around 10:30, Loren texted that he had not been able to reach Dad by phone in his hospital room. I called up to the nurses' desk to check on things. Oh my. I spoke with a woman named Melanie who was clearly not a native English speaker, so our communication was difficult. She told me that she was about to call me because Dad was giving them a hard time. He was getting out of bed and trying to walk around. They were concerned about him falling. Plus he really was not dressed appropriately for walking around. (snicker-me, not Melanie) She also conveyed that Dad was not entirely lucid.
I asked about a bed alarm. Melanie said he was taking it off. I asked about providing a bed in which the bed sensor worked instead of using a clip on alarm. Melanie either did not understand or did not like that idea. I explained that Dad seems to get hospital dementia and said we just need to get him the medicine he needs and get him home. Melanie suggested it might just be his age. I reminded her that he was diagnosed with sepsis and pneumonia, was she saying that was caused by old age? No, no, she meant the dementia. I asked if the doctor had ever been by. She didn't know. I asked if the blood work results were in. She said the blood work was clear. I exclaimed incredulously that there was something growing the day before and now it was clear? Yes, it is clear. Oh my. Melanie asked if a family member could come spend the night with Dad.
We had a quick family meeting, I kissed everyone goodbye, and headed for the hospital. In my head was playing the music from Wizard of Oz, when Almira Gulch is riding her bike down the road to get Toto. Dave suggested I ask for the charge nurse when I arrived, so I did. And guess who it was? Yup, Melanie. Not a good sign. I was not happy with the whole situation.
Some positives: Dad had just returned from a CT scan. His room was much cleaner than earlier in the day. His bed was freshly made up. He knew who I was most of the time. His gown was still dirty, but when a tech came in to get Dad's vitals, she asked if he wanted a clean gown. He demurred, I accepted. The staff was really, really nice and accomodating all night long.
When I walked in and greeted Dad, my new friend Melanie was with me. I told Dad I had come to spend the night with him. (He thought I was there for a test with Mom.)
Gwen: Dad, I talked to Melanie. Guess what she told me?
Dad: (pause) That I'm getting out of bed.
Stinker!
Really, he had a good night. He slept lightly for most of the night, only tried to get out of bed once and that was to go to the bathroom. At one point, he thought he was at home, so I asked him to tell me where he was.
Dad: Well, if I was consigned to hell, I'd say this was hell.
Gwen: (laughing) You're not going to hell, so where are you?
Dad: Heaven.
Gwen: How about somewhere in between?
Dad: Earth.
Gwen: Where on earth?
Dad: The ground. Not really. The concrete.
Gwen: What is this room?
Dad: The hospital.
Dad coughed vigorously all through the night. Around five in the morning, Dad started feeling nauseous. He threw up several times, not huge amounts. I stayed til 9:15, when I needed to go pick up Mom for her CT scan.
One great benefit of this whole episode is that the hospital is now providing a sitter for Dad. This person just sort of, well, sits, and keeps an eye on Dad. She will talk to him if he gets confused and keep him where he is supposed to be.
Tuesday night around 10:30, Loren texted that he had not been able to reach Dad by phone in his hospital room. I called up to the nurses' desk to check on things. Oh my. I spoke with a woman named Melanie who was clearly not a native English speaker, so our communication was difficult. She told me that she was about to call me because Dad was giving them a hard time. He was getting out of bed and trying to walk around. They were concerned about him falling. Plus he really was not dressed appropriately for walking around. (snicker-me, not Melanie) She also conveyed that Dad was not entirely lucid.
I asked about a bed alarm. Melanie said he was taking it off. I asked about providing a bed in which the bed sensor worked instead of using a clip on alarm. Melanie either did not understand or did not like that idea. I explained that Dad seems to get hospital dementia and said we just need to get him the medicine he needs and get him home. Melanie suggested it might just be his age. I reminded her that he was diagnosed with sepsis and pneumonia, was she saying that was caused by old age? No, no, she meant the dementia. I asked if the doctor had ever been by. She didn't know. I asked if the blood work results were in. She said the blood work was clear. I exclaimed incredulously that there was something growing the day before and now it was clear? Yes, it is clear. Oh my. Melanie asked if a family member could come spend the night with Dad.
We had a quick family meeting, I kissed everyone goodbye, and headed for the hospital. In my head was playing the music from Wizard of Oz, when Almira Gulch is riding her bike down the road to get Toto. Dave suggested I ask for the charge nurse when I arrived, so I did. And guess who it was? Yup, Melanie. Not a good sign. I was not happy with the whole situation.
Some positives: Dad had just returned from a CT scan. His room was much cleaner than earlier in the day. His bed was freshly made up. He knew who I was most of the time. His gown was still dirty, but when a tech came in to get Dad's vitals, she asked if he wanted a clean gown. He demurred, I accepted. The staff was really, really nice and accomodating all night long.
When I walked in and greeted Dad, my new friend Melanie was with me. I told Dad I had come to spend the night with him. (He thought I was there for a test with Mom.)
Gwen: Dad, I talked to Melanie. Guess what she told me?
Dad: (pause) That I'm getting out of bed.
Stinker!
Really, he had a good night. He slept lightly for most of the night, only tried to get out of bed once and that was to go to the bathroom. At one point, he thought he was at home, so I asked him to tell me where he was.
Dad: Well, if I was consigned to hell, I'd say this was hell.
Gwen: (laughing) You're not going to hell, so where are you?
Dad: Heaven.
Gwen: How about somewhere in between?
Dad: Earth.
Gwen: Where on earth?
Dad: The ground. Not really. The concrete.
Gwen: What is this room?
Dad: The hospital.
Dad coughed vigorously all through the night. Around five in the morning, Dad started feeling nauseous. He threw up several times, not huge amounts. I stayed til 9:15, when I needed to go pick up Mom for her CT scan.
One great benefit of this whole episode is that the hospital is now providing a sitter for Dad. This person just sort of, well, sits, and keeps an eye on Dad. She will talk to him if he gets confused and keep him where he is supposed to be.
Tuesday, May 18, 2010
Insight
I was up at school for a bit today. As I sat in my boss's office, gathering my thoughts and jotting notes in my planner, I commented about writing: Get gun from garage. I mean, how often do you get to write that on your to-do list? I was telling my boss that Dad has been looking for his knife and planning to clean his gun so he can take out intruders.
She said immediately: He feels vulnerable.
Yes.
She said immediately: He feels vulnerable.
Yes.
Tuesday Tango
Step One: I picked Mom up this morning around 7:00 to head over for her chemical stress test. She was in good spirits. What a trouper. We asked about an earlier Echo (I've been calling it an EKG, wrong) and were able to move it to 11:00.
Step Two: Once she got started around 7:30, I went over to visit Dad. Oh my. What a contrast with ICU. ICU at our local hospital is wonderful, full of attentive, skilled and knowledgeable people. Clean, bright and roomy. Shift to the regular room. Small, dirty and cluttered with a tiny shuttered window. Understaffed, complete with a nurses' desk that is either clueless or disinterested or both. The Oasis vs. The Third World Country
When I walked in, Dad was sprawled on his bed, uncovered, in a dirty hospital gown, not even hooked up to his i.v. I gowned and gloved and went in. Dad woke up after a bit and was happy to see me. I checked through his stuff to make sure it had all arrived with him. (It had.) When I picked up his false teeth tub, Dad said: "We've been keeping turtles in that. The postman brought it by to keep sharp knives in."
Gwen: "I thought it was for your teeth."
Dad: "Well, I was just telling you the different uses for it."
The doctor had not been in.
Step Three: Back over to get Mom from her Stress Test. She had had very loose bowels and needed to go home to change. I was so sorry for the indignity of it all. :(
Step Four: I ran errands so Mom could have a bit of time alone at home before we went back up for the Echo at 11:00. (She hasn't spent this much time with me since I was a toddler and I'm sure it is wearing thin.) Checked Mom in on 2nd floor for Echo.
Step Five: Over to visit Dad again. He was sitting in a chair! Which is great, except he got out of bed and was trying to walk around. He then reportedly got very upset with all the people rushing to his room to tell him to sit. When I told Mom this later, she said: "He's getting better!" Still very loopy, saying off the wall things, and I think confusing me for Mom. Definitely hospital dementia, which we have seen before. Still no doctor. We need to get him well and get him out of there!
Step Six: Back over to get Mom after her Echo, then we are to head downstairs for one more image for the stress test. Unfortunately, I waited in the downstairs waiting room while Mom was upstairs. Fortunately, the sweet girl who did Mom's stress test came out and saw me and then it clicked that I was in the wrong place. Mom and I reunited upstairs and went downstairs for the last image.
Step Seven: Mom took me out for a bowl of soup at Panera. She was determined to visit Dad on her own in the afternoon. She also needed to pick up her prep for the contrast abdominal CT tomorrow. I'm so sorry she has to drink more. :(
Step Eight: I did family stuff and Mom made a successful trek alone to the hospital. She doesn't know how she arrived at Dad's room or radiology, but she was pleased that she somehow got to the right places.
And that's how you do the Tuesday Tango!
Step Two: Once she got started around 7:30, I went over to visit Dad. Oh my. What a contrast with ICU. ICU at our local hospital is wonderful, full of attentive, skilled and knowledgeable people. Clean, bright and roomy. Shift to the regular room. Small, dirty and cluttered with a tiny shuttered window. Understaffed, complete with a nurses' desk that is either clueless or disinterested or both. The Oasis vs. The Third World Country
When I walked in, Dad was sprawled on his bed, uncovered, in a dirty hospital gown, not even hooked up to his i.v. I gowned and gloved and went in. Dad woke up after a bit and was happy to see me. I checked through his stuff to make sure it had all arrived with him. (It had.) When I picked up his false teeth tub, Dad said: "We've been keeping turtles in that. The postman brought it by to keep sharp knives in."
Gwen: "I thought it was for your teeth."
Dad: "Well, I was just telling you the different uses for it."
The doctor had not been in.
Step Three: Back over to get Mom from her Stress Test. She had had very loose bowels and needed to go home to change. I was so sorry for the indignity of it all. :(
Step Four: I ran errands so Mom could have a bit of time alone at home before we went back up for the Echo at 11:00. (She hasn't spent this much time with me since I was a toddler and I'm sure it is wearing thin.) Checked Mom in on 2nd floor for Echo.
Step Five: Over to visit Dad again. He was sitting in a chair! Which is great, except he got out of bed and was trying to walk around. He then reportedly got very upset with all the people rushing to his room to tell him to sit. When I told Mom this later, she said: "He's getting better!" Still very loopy, saying off the wall things, and I think confusing me for Mom. Definitely hospital dementia, which we have seen before. Still no doctor. We need to get him well and get him out of there!
Step Six: Back over to get Mom after her Echo, then we are to head downstairs for one more image for the stress test. Unfortunately, I waited in the downstairs waiting room while Mom was upstairs. Fortunately, the sweet girl who did Mom's stress test came out and saw me and then it clicked that I was in the wrong place. Mom and I reunited upstairs and went downstairs for the last image.
Step Seven: Mom took me out for a bowl of soup at Panera. She was determined to visit Dad on her own in the afternoon. She also needed to pick up her prep for the contrast abdominal CT tomorrow. I'm so sorry she has to drink more. :(
Step Eight: I did family stuff and Mom made a successful trek alone to the hospital. She doesn't know how she arrived at Dad's room or radiology, but she was pleased that she somehow got to the right places.
And that's how you do the Tuesday Tango!
Regular Room
Dad was moved to a regular room last night. His night nurse was kind enough to call and let us know. And then he called to tell us they had changed room numbers. This was truly very considerate, but two late night calls are a little unnerving in the current health climate!
I do think lots of phone calls would be great for Dad.
I do think lots of phone calls would be great for Dad.
Monday, May 17, 2010
Well That Explains A Lot
Mom was exclaiming how suddenly Dad's illness came on. She was asked if Dad had felt ill or uncomfortable earlier in the day or week.
Mom: Either he didn't feel bad or he didn't say. I've never been able to figure him out!
Short Pause.
Mom: But if I did figure him out, I wouldn't say.
There you have it.
Mom: Either he didn't feel bad or he didn't say. I've never been able to figure him out!
Short Pause.
Mom: But if I did figure him out, I wouldn't say.
There you have it.
Monday Madness
Mom and I went down to 1960 today to meet with the oncologist, Dr. K. We both liked him a lot. Again, we are blessed with a doctor that talks to Mom clearly and respectfully, giving time for questions and generally treating Mom like a valuable person. He ordered a PET scan, a CT scan, and some blood work (CBC, CEA and something else). We did the blood draw there in the office and scheduled the scans. After the appointment, Mom treated me to a bowl of soup at Panera and we debriefed some. This is becoming a tradition for us, which is nice. We are both fed, we rehash the appointment, and then Mom can go home and nap. :)
Schedule Changes:
Wednesday, May 19 -- CT Scan (small bowel cancelled for now, on the back burner)
Thursday, May 20 -- PET Scan
Tuesday, May 25 -- Dr. K again
Mom and I didn't get by to see Dad this morning, but made the 5:00 visiting hour. We were surprised to learn we needed to don gowns and gloves to go in his room. Seems Dad has staph in his nose. There is something growing in his blood sample too, but it is too soon to tell what it is. Maybe tomorrow? Dad's blood pressure is at a good level with no intervention. His lungs are responding to the antibiotics. Physically, Dad is doing well and they are hoping to move him to a regular room soon.
Mentally, Dad is starting to wander. He said some odd things while we were there. He thought he saw his glasses on the floor. The nurse said he thought he heard something outside and needed to go check it out. I know it is disorienting to be in the hospital, it is just hard to watch. I will try to visit more often with Dad tomorrow. Mom and I will be next door for her Stress Test and EKG, so I should be able to pop over during visiting hours. Maybe that will help him keep oriented.
Schedule Changes:
Wednesday, May 19 -- CT Scan (small bowel cancelled for now, on the back burner)
Thursday, May 20 -- PET Scan
Tuesday, May 25 -- Dr. K again
Mom and I didn't get by to see Dad this morning, but made the 5:00 visiting hour. We were surprised to learn we needed to don gowns and gloves to go in his room. Seems Dad has staph in his nose. There is something growing in his blood sample too, but it is too soon to tell what it is. Maybe tomorrow? Dad's blood pressure is at a good level with no intervention. His lungs are responding to the antibiotics. Physically, Dad is doing well and they are hoping to move him to a regular room soon.
Mentally, Dad is starting to wander. He said some odd things while we were there. He thought he saw his glasses on the floor. The nurse said he thought he heard something outside and needed to go check it out. I know it is disorienting to be in the hospital, it is just hard to watch. I will try to visit more often with Dad tomorrow. Mom and I will be next door for her Stress Test and EKG, so I should be able to pop over during visiting hours. Maybe that will help him keep oriented.
Sunday, May 16, 2010
Sunday Update
Definitely pneumonia in lower left lung. CT scan today confirmed it.
Nish's associate came by. Nish will appear tomorrow.
Waiting for blood and urine results.
Nish's associate came by. Nish will appear tomorrow.
Waiting for blood and urine results.
Sunday Sunday
Mom and I went to visit Dad this morning. I was wrong about CCU, he's actually in ICU. Dad looked really good and was pretty alert and coherent. He remembered that Dave visited him last night and he didn't insist on going home. He did tell Mom he wanted to go home when I was out of the room. Sneaky!
Dad's blood pressure is good, but it is being elevated with medicine. While we were there, a girl came in with an ultrasound machine and looked at Dad's heart. Amazing and very cool! Dad won't see the hospital cardiologist and is waiting for Dr. Nish to weigh in. I'm not sure when that will happen.
After we saw Dad, Mom wanted to go to church. We went together and she was showered with love and care from her friends. Then Mom was ready to go home for a nap. I'm planning to go back up to see Dad in the 5-6 visiting hours tonight. I'll call Mom and see if she wants to come. I think she is still reeling.
Dad's blood pressure is good, but it is being elevated with medicine. While we were there, a girl came in with an ultrasound machine and looked at Dad's heart. Amazing and very cool! Dad won't see the hospital cardiologist and is waiting for Dr. Nish to weigh in. I'm not sure when that will happen.
After we saw Dad, Mom wanted to go to church. We went together and she was showered with love and care from her friends. Then Mom was ready to go home for a nap. I'm planning to go back up to see Dad in the 5-6 visiting hours tonight. I'll call Mom and see if she wants to come. I think she is still reeling.
Saturday, May 15, 2010
I'm Not Making This Up
Dad went to the ER today in an ambulance. *sigh* I asked Mom, "What happened to you all taking turns?" We've always laughingly observed that they take turns having medical emergencies. No fair going at the same time!
When Mom came out from her short nap this afternoon, Dad asked for a blanket. He was in his chair, shaking, chilled and weak. Mom called me (yea!) and Dave (yea!) and the visiting nurse, Brenda. I was at work, scheduled through 4:00. Mom called at 1:51 and I miraculously got off at 2:00 and got her message. Since I was already in town, I probably arrived at the folks' house sooner than if I had been at home for her original call. When I walked in, Dad was still in his chair, with labored breathing. He didn't feel feverish at first, but then got hotter and hotter as we waited for Nurse Brenda. He started to get disoriented and began his routine about needing to get up. (Remember that?) He threw up once.
Brenda arrived around 2:45 and quickly determined that Dad needed to go in for medical attention. His temperature was up to 103.5 and his blood pressure was down to 100/74. We tried to load Dad into his wheelchair, but it was impossible. Brenda called for an ambulance. The paramedics arrived around 3:30 and Dad's bp was down to 88 over something. They were not the best paramedics I've ever seen and had a hard time understanding why we had called. Just take my dad to the hospital, please!
By the time the boys delivered Dad to the hospital, his bp was down to 60 over something. (How is it we left the house at the same time, took different routes, I didn't speed, and we got to the hospital before them? We watched them wheel Dad across the parking lot as we looked out the waiting room window.) He received prompt and attentive care in the ER. Mom really liked the ER doctor and the nurse. Dad was amazingly alert and cooperative. Physical exam, chest x-ray, 6 vials of blood draws, urine sample. Dad wanted a blanket. Mom wanted a blanket. Then Mom wanted to go home and could not wait for Dave, so I left and took her home. She needs to eat and rest. We will go back in the morning.
While we were there, the ER doctor (Dr. Becker) ordered antibiotics through the IV. His theory is that Dad has some sort of infection, we just don't know what yet. Dave texted to say they were also giving lovinox. Odd, isn't it, to be giving a blood thinner to a man already on plavix? Then Dave texted to say Dad is being moved to CCU Room 16. He has an infection, possible early onset pneumonia, and a possible heart attack according to some bloodwork.
That's all I know. Good thing we buckled our seatbelts.
When Mom came out from her short nap this afternoon, Dad asked for a blanket. He was in his chair, shaking, chilled and weak. Mom called me (yea!) and Dave (yea!) and the visiting nurse, Brenda. I was at work, scheduled through 4:00. Mom called at 1:51 and I miraculously got off at 2:00 and got her message. Since I was already in town, I probably arrived at the folks' house sooner than if I had been at home for her original call. When I walked in, Dad was still in his chair, with labored breathing. He didn't feel feverish at first, but then got hotter and hotter as we waited for Nurse Brenda. He started to get disoriented and began his routine about needing to get up. (Remember that?) He threw up once.
Brenda arrived around 2:45 and quickly determined that Dad needed to go in for medical attention. His temperature was up to 103.5 and his blood pressure was down to 100/74. We tried to load Dad into his wheelchair, but it was impossible. Brenda called for an ambulance. The paramedics arrived around 3:30 and Dad's bp was down to 88 over something. They were not the best paramedics I've ever seen and had a hard time understanding why we had called. Just take my dad to the hospital, please!
By the time the boys delivered Dad to the hospital, his bp was down to 60 over something. (How is it we left the house at the same time, took different routes, I didn't speed, and we got to the hospital before them? We watched them wheel Dad across the parking lot as we looked out the waiting room window.) He received prompt and attentive care in the ER. Mom really liked the ER doctor and the nurse. Dad was amazingly alert and cooperative. Physical exam, chest x-ray, 6 vials of blood draws, urine sample. Dad wanted a blanket. Mom wanted a blanket. Then Mom wanted to go home and could not wait for Dave, so I left and took her home. She needs to eat and rest. We will go back in the morning.
While we were there, the ER doctor (Dr. Becker) ordered antibiotics through the IV. His theory is that Dad has some sort of infection, we just don't know what yet. Dave texted to say they were also giving lovinox. Odd, isn't it, to be giving a blood thinner to a man already on plavix? Then Dave texted to say Dad is being moved to CCU Room 16. He has an infection, possible early onset pneumonia, and a possible heart attack according to some bloodwork.
That's all I know. Good thing we buckled our seatbelts.
Friday, May 14, 2010
Warp Speed
I feel like we hit warp speed today. Mom and I went at 11:30 for the pathology report with Dr. Kvapil. The mass is indeed cancer, the medical embodiment of evil. The multiple polyps Dr. K removed were pre-cancerous. Mom asked about her small bowel blockage in February and Dr. K ordered a small bowel series to see what is going on in there.
Mom was hesitant to commit to seeing a surgeon. Dr. K explained that if she did not have the mass removed, it would cause nausea and pain, and would eventually necessitate emergency surgery. He did ask us if we had a surgeon and oncologist we preferred. I explained that our general physician was not available to advise us. Dr. K did a great segue, pointing out that Dr. Caperton had recommended him, and so in essence was trusting his recommendations. Good move!
Mom was not thrilled with the prospect of the tests Monday and even asked me to call the surgeon to make sure they were necessary. The answer was, "Definitely!" It took a bit of schedule juggling, but we arrived at:
Monday, May 17, 12:00 Dr. Kleinbaum (oncologist)
Tuesday, May 18, 7:30 Stress Test, 1:45 EKG
Wednesday, May 19, 10:30 Small Bowel Series
Wednesday, May 26, Dr. Newton (surgeon)
Buckle your seat belts.
Mom was hesitant to commit to seeing a surgeon. Dr. K explained that if she did not have the mass removed, it would cause nausea and pain, and would eventually necessitate emergency surgery. He did ask us if we had a surgeon and oncologist we preferred. I explained that our general physician was not available to advise us. Dr. K did a great segue, pointing out that Dr. Caperton had recommended him, and so in essence was trusting his recommendations. Good move!
Mom was not thrilled with the prospect of the tests Monday and even asked me to call the surgeon to make sure they were necessary. The answer was, "Definitely!" It took a bit of schedule juggling, but we arrived at:
Monday, May 17, 12:00 Dr. Kleinbaum (oncologist)
Tuesday, May 18, 7:30 Stress Test, 1:45 EKG
Wednesday, May 19, 10:30 Small Bowel Series
Wednesday, May 26, Dr. Newton (surgeon)
Buckle your seat belts.
Thursday, May 13, 2010
New Style and Background
Can everyone read this okay? Our computer screen has gone very dim for some mysterious reason and my old blog format was too, too dark on the monitor. Let me know if this new format is blinding or illegible for you. And can anyone tell me how to get the words off Dad's head?
Preparations and Concerns
Dr. Kvapil instructed us to call Mom's cardiologist. He wanted us to let Dr. Nish know that Mom will be off of all blood thinners at least until Friday. He also wanted us to let Dr. Nish know that Mom will likely be having surgery soon, so he (Dr. N) can do any necessary tests. I called Tuesday and left a message.
Dr. Nish called me Wednesday. He said he had just talked to Mom but didn't get anywhere because Mom didn't know why he was calling or what they would need to talk about. This bothers me. Dr. N asked if Mom had been showing signs of senility. I do think she is getting foggier, forgetting details. For instance, Mom couldn't remember how long ago she last had cancer. She thought maybe 14 years ago. That seems a pretty big thing to forget. I think for now, especially with everything relating to the cancer, I will need to force myself into the middle of Mom's business. I don't want to. Mom definitely doesn't want me to. But I think for now it is necessary.
And about Dr. Nish. He will be "out" (I don't know for how long) after Wednesday. He went ahead and scheduled Mom to have a chemical stress test and an EKG on Monday so he can get her results before he leaves. I haven't told Mom yet. Dr. N also assured me that Mom's blood pressure and atrial fib can be controlled in a hospital environment, so that is not an overriding concern. Good to know.
Mom called today to let me know her appointment has been changed from 9:15 to 11:30 Friday. We will get pathology results then and hopefully make appointments to get things rolling with an oncologist and surgeon. Northwest Cancer Center has been recommended by Dr. Kvapil and by a friend currently being treated for cancer. We'll see.
Tuesday, May 11, 2010
Mother Knows Best
And it turns out she knew she had cancer. Dr. Kvapil found what he is sure is cancer in Mom's colon up by the liver. We are going Friday for the biopsy report. Mom and Dad are stoic. As usual. :)
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