Today was Dad's last visit with Dr A. He's moving to Johnson Regional in Tennessee. I sure hate to see him go since he is the one person who came up with a diagnosis and treatment plan for dad. But Dr. A feels like dad is out of the woods as far as the fungal infection goes.
This visit was much better than ones in the past! Dad's lab work showed a lower white count but his CRP (Cardio Reactive Protein) is elevated now. Dr. A ordered another blood test since CRP is an indicator (though not reliable) of infection. If the results indicate a change is needed, Dr. A will call us with the info,
As for the rest of the story, Dad's lungs sounded better than they have. His weight is 131 and his color is rosey. Really. Rosey. Not grey or pale. He's got a kick in his step. His memory comes and goes but he's pleasant more often than not. Dad will continue taking vfend for a long time to come.
At this point, Dad shared that Pfizer called yesterday to let him know his next courtesy shipment is on its way. I'm still amazed at their level of attention to detail once we got him approved.
Back to Dr. A... this physical exam indicated there is nothing new to be concerned about. Rather than referring dad to another infectious disease specialist, he'll leave him in the continuing care of Dr. Homsi. But, you may recall, Dr. Homsi might be leaving too. Dr. A shook his head when I asked about Dr. Homsi's departure date saying that it was a moving target but probably the end of June. Dad sees Dr. Homse on May 4 so we'll get an update then. Dr A was kind enough to tell us that if any doc -- Dr. Homsi or whomever -- needed to consult with him regarding Dad's care to feel free to call him at Johnsonville.
We stopped by the lab for dad's blood to be drawn. Andrew, the adorable phlebotomist, always treats "Mr Hall" like a king. He laughs at Dad's jokes and listens attentively to his stories. Andrew is leaving as well -- sometime mid summer -- to move to Texas with his girlfriend. Everyone moves on - I understand that. I just hope that we've got Dad's health on a good plateau by the time this happens.
Wednesday, April 20, 2011
Wednesday, April 6, 2011
Good day, sunshine. Good day, sunshine.
Today was another visit for Dad with Dr. Homsi, the pulmonologist. It was a bright sunny day with blustery winds. He had the customary chest x-ray before I met up with him. Dad has been in a really good mood the last few days -- a sign to me that he's feeling better. Yesterday he say his internal med doctor and got a good report (e.g. nothing to report so by default a good report). I plopped down next to Dad in the waiting room. He was thumbing through a magazine and started reading titles of articles to me. He came across one for muscadines and showed me some of the pictures. It was really cute of him. In that particular article, it said you could order them from such-and-such greenhouse company; Dad remarked "don't guess I ought to by them since they take a few years to mature." Then he chuckled. He found a recipe for a raspberry beverage and read it to me. I had to smile because others in the waiting room were hearing him. But I didn't care. -- it reminded me of the song "dance like nobody's watching." Who cares what those other people thought! The next recipe was for something like a grapefruit martini. Holy cow! We both laughed at the pucker power it'd take to get through a drink like that. He was intrigued by one ingredient "sweetened lime juice" and carried on and on "how in the sam hill do you get sweetened lime juice."
When Dad's name was called, he did his usual motion with his right index finger to "hurry on ahead of him." I smiled inside because I know in his mind I'm still his child -- just as my grown kids are to me. He was really chipper. Did I mention that before? As we approached the scale, Dad said 133. Nurse Kyra and I guessed his weight as well. He weighed 132.6. By rounding rules, that would be 133. Smarty pants.
I can't remember all his silliness in the exam room. But there was plenty. From his cold fingers not registering and the suggestion of warming one up in a body pocket (um, orifice) as well as other silly things.
When Dr. Homsi came in, he cut straight to the chase with us. The "legion" is smaller. There's been about at 70% reduction in density. WOW! Dr. Homsi was really pleased and said we'd repeat the x-ray and continue on the drug cocktail of prednisone, bactrim, and vfend for another 4 weeks. I asked Dr. Homsi if he'd had any successful interviews and was leaving. He said he was indeed leaving the end of June but he thought by then Dad will have turned the corner on this thing in his left lung. Dr. H and I locked our eyes for a moment. He gave me a mind-reading barely noticeable nod "yes" indicating that Dad was improving. This meant so much to me... Dr. H had promised to let me know when we needed to let Dad go and that he had a connection with Dad because he reminded him of his own father in Syria.
As we waited for Dr. H to return with the Rx info, Dad was swinging his legs. He kept saying "I can't believe this. I am getting better. This is such good news. Wow." It was so touching and wonderful and ... well I could go on and on.
Looking back at that visit now... I know it was good news. The pragmatic side of me says "slow down" and that Dad isn't out of the woods. He's a frail man and any number of setbacks could happen. But for today, we have a victory. As we walked out side by side, he was laughing and then commented "wonder if I can find the van." He knew, of course, he would. Today was the first day he's ever gotten the handicap spot by the front door. His luck was good today. Maybe he should go to the casino.
As we parted ways, I thought how beautiful the sky is today. The sun bright. The wind was swift and added a bit of craziness as my hair blew about my head. I looked up and said... good day, sunshine.
When Dad's name was called, he did his usual motion with his right index finger to "hurry on ahead of him." I smiled inside because I know in his mind I'm still his child -- just as my grown kids are to me. He was really chipper. Did I mention that before? As we approached the scale, Dad said 133. Nurse Kyra and I guessed his weight as well. He weighed 132.6. By rounding rules, that would be 133. Smarty pants.
I can't remember all his silliness in the exam room. But there was plenty. From his cold fingers not registering and the suggestion of warming one up in a body pocket (um, orifice) as well as other silly things.
When Dr. Homsi came in, he cut straight to the chase with us. The "legion" is smaller. There's been about at 70% reduction in density. WOW! Dr. Homsi was really pleased and said we'd repeat the x-ray and continue on the drug cocktail of prednisone, bactrim, and vfend for another 4 weeks. I asked Dr. Homsi if he'd had any successful interviews and was leaving. He said he was indeed leaving the end of June but he thought by then Dad will have turned the corner on this thing in his left lung. Dr. H and I locked our eyes for a moment. He gave me a mind-reading barely noticeable nod "yes" indicating that Dad was improving. This meant so much to me... Dr. H had promised to let me know when we needed to let Dad go and that he had a connection with Dad because he reminded him of his own father in Syria.
As we waited for Dr. H to return with the Rx info, Dad was swinging his legs. He kept saying "I can't believe this. I am getting better. This is such good news. Wow." It was so touching and wonderful and ... well I could go on and on.
Looking back at that visit now... I know it was good news. The pragmatic side of me says "slow down" and that Dad isn't out of the woods. He's a frail man and any number of setbacks could happen. But for today, we have a victory. As we walked out side by side, he was laughing and then commented "wonder if I can find the van." He knew, of course, he would. Today was the first day he's ever gotten the handicap spot by the front door. His luck was good today. Maybe he should go to the casino.
As we parted ways, I thought how beautiful the sky is today. The sun bright. The wind was swift and added a bit of craziness as my hair blew about my head. I looked up and said... good day, sunshine.
Tuesday, March 22, 2011
Looking to mellow
I'm relieved to report that I am getting my brain back in order. I'm accepting that I am middle aged. I'm actually taking a long look at many aspects of life. For instance, Steve has interviewed for a job in OKC. It would require us living apart until such time as I decided to pursue a job there. I don't know when -- or if -- that will ever happen. But I've decided I can't worry about that anyhow. I've got bigger fish to fry.
Today I took Dad to his appointment with Dr. A. We are so so sad that Dr. A is moving to Tennessee. But I digress. Dad called me shortly after 9 to tell me they'd called to say they could see him early. He was at Waffle House having his coffee -- something he rarely does these days. But he'd had his chest x-ray and time to kill so drove over to WH to drink with his buddies. I hurriedly left my office to meet him at the clinic. The temp was in the 70's and there was a pleasant breeze. I told Dad how good he looked. I meant it too. His color is back. He's gained a couple of pounds. He laughed and said it felt good to see his friends.
When Dr. A came in, it was the usual review. Dad told him about the incredibly painful leg cramps he's been having for the last couple of weeks. His potassium and other numbers all looked really good. Dr. A supposed it could be dehydration. He asked dad what he drinks at home during the day. Dad said Pepsi. Dr. A asked how many. Dad said around 4. I've never heard a doctor yell out before but Dr. A did it. I'm sure everyone in the clinic heard it. Then he started laughing. It was a contagious laugh from deep in his gut. He said that's why you're dehydrated. Caffeine is a diuretic and you take diuretics and you need to be drinking water or juice... not caffeinated drinks. He laughed and laughed. Then he told Dad to limit his soda to 2 a day. Dad laughed along. Then he stepped out to call the radiologist about the x-rays.
When he returned, he was beaming. It seems crazy to say that about a doc but he was. He told us that the mass had not grown any in the last 2 weeks and in fact, according to the radiologist, it was "fractionally smaller". He said it doesn't appear to be a cancer if this is the case. He was so pleased that the drug cocktail he and Dr. Homsi had contrived was working. I only wish he wasn't leaving now. Anyhow, he will see dad one more time in mid April before he relocates his family to Tennessee.
Dad returns to another x-ray and to see Dr. Homsi in 2 weeks. If it keeps going, I think his prognosis will imrprove. He was so happy as we were leaving. I knew it was a good day before the visit but he was on cloud 9 after it. And he swears he'll modify his soda intake. Dad admitted he wasn't truthful with Dr. A about the number -- and that it was more like 6 or 8 a day. He laughed again about it. And he was pleased that his gaffe made Dr. A laugh so darn hard. He's going to miss these doctors too. They've saved his life.
Looking back now over the last 5 months and 21 days since I first signed the papers to have dad resuscitated, I have wondered why I did that. And the doctors in ER were so grim about his prognosis. But he wanted (and wants) to live. Each time he came into consciousness he would proclaim he had to live to care for Mom. And live he did. My sisters and I went with our gut. It's been a long road -- and it will continue to be a hard road. But we'll take these little victories when we get them. Today was a victory.
Today I took Dad to his appointment with Dr. A. We are so so sad that Dr. A is moving to Tennessee. But I digress. Dad called me shortly after 9 to tell me they'd called to say they could see him early. He was at Waffle House having his coffee -- something he rarely does these days. But he'd had his chest x-ray and time to kill so drove over to WH to drink with his buddies. I hurriedly left my office to meet him at the clinic. The temp was in the 70's and there was a pleasant breeze. I told Dad how good he looked. I meant it too. His color is back. He's gained a couple of pounds. He laughed and said it felt good to see his friends.
When Dr. A came in, it was the usual review. Dad told him about the incredibly painful leg cramps he's been having for the last couple of weeks. His potassium and other numbers all looked really good. Dr. A supposed it could be dehydration. He asked dad what he drinks at home during the day. Dad said Pepsi. Dr. A asked how many. Dad said around 4. I've never heard a doctor yell out before but Dr. A did it. I'm sure everyone in the clinic heard it. Then he started laughing. It was a contagious laugh from deep in his gut. He said that's why you're dehydrated. Caffeine is a diuretic and you take diuretics and you need to be drinking water or juice... not caffeinated drinks. He laughed and laughed. Then he told Dad to limit his soda to 2 a day. Dad laughed along. Then he stepped out to call the radiologist about the x-rays.
When he returned, he was beaming. It seems crazy to say that about a doc but he was. He told us that the mass had not grown any in the last 2 weeks and in fact, according to the radiologist, it was "fractionally smaller". He said it doesn't appear to be a cancer if this is the case. He was so pleased that the drug cocktail he and Dr. Homsi had contrived was working. I only wish he wasn't leaving now. Anyhow, he will see dad one more time in mid April before he relocates his family to Tennessee.
Dad returns to another x-ray and to see Dr. Homsi in 2 weeks. If it keeps going, I think his prognosis will imrprove. He was so happy as we were leaving. I knew it was a good day before the visit but he was on cloud 9 after it. And he swears he'll modify his soda intake. Dad admitted he wasn't truthful with Dr. A about the number -- and that it was more like 6 or 8 a day. He laughed again about it. And he was pleased that his gaffe made Dr. A laugh so darn hard. He's going to miss these doctors too. They've saved his life.
Looking back now over the last 5 months and 21 days since I first signed the papers to have dad resuscitated, I have wondered why I did that. And the doctors in ER were so grim about his prognosis. But he wanted (and wants) to live. Each time he came into consciousness he would proclaim he had to live to care for Mom. And live he did. My sisters and I went with our gut. It's been a long road -- and it will continue to be a hard road. But we'll take these little victories when we get them. Today was a victory.
Thursday, March 10, 2011
It continues to grow
This week has been a doozy. I took dad for lab work, CT and a doc appointment. I don't think I've mentioned that his doctor, one of the 2 we really like, is leaving... and the other is in negotiations but expects to leave also. Today we saw the one who hasn't yet made up his mind.
The CT showed the mass in his lung has grown about a half inch since January. Dr. H said he isn't quite sure why. The biopsies have not shown cancer but it can't be ruled out. It may be that the fungal infection in his lung is masking a cancer. The only real way -- and we've known this all along -- is to do a surgical biopsy where a wedge of his lung is removed and tested. Dad won't likely survive such a procedure becuase his lung is too brittle. So the 3 options for now are to do surgery (yeah, well not really), do nothing (lt it grow and he'll die from it sooner rather than later), or continue to throw drugs at it and hope something stops it.
Last week, I finally got word from Pfizer that he was approved for the RSVP program and getting the $3k a month drug (60 pills) free through December. His co-pay was nearly $1000 a month so this saves him about $9000 this year.
Anyhow, he's taking vfend (mentioned above). The problem with this infection is that it could be bacterial as well. If that's the case, he needs a steroid. But steroids make fungi grow. So he is getting vfend and a steroid and a low dose antibiotic to help maintain balance. This will likely mess up his stomach in a week or so which means we have to be on the lookout and catch that early if/when it does.
I just called the doc's office a bit ago. Dr. H had said that normally in a lab, the petri dishes are grown 3 days then destroyed. In this case, he wants to grow it out longer to see if anything else shows up. So I was asked to call and remind them to tell the lab to save it. So that's done.
My oh my, life is throwing curve balls. Dad and I are in pretty good shape after all the poking and prodding. He goes home and I head back to work. I am pleased becuase we are ahead of schedule -- only missed 3 hours of work this time. I had forgotten to turn the volume up on my ringer so missed a call. It was mom calling for the doc's report. Unfortunately (or fortunately depending on how you look at it) she forgot to hang up the phone. So I heard the conversation that followed. She was crying and talking about personal things -- like moving to another house. This has been a point of contention with them since they sold their home and Kris sold hers and they all moved in together. It's something mom wanted. But now she wants their own place. And we can't figure out why. She is completely incapable of taking care of herself -- she can't effectively use a fork. She's still in denial about blindness and hoping to regain her vision. I let her hang on to that hope most of the time though sometimes I just want to yell at her to stop with it. But she has nothing else to really cling to. Except all the little nagging things that dad does.
One of those things has to do wtih an affair she has imagined him to have. Lord help us all, this affair supposed happened recently and with a lady from church. Lord help us, did I saw that already? Mom brings this delusion up regularly and it drives us all nuts. Somehow I am the one who told her about it and now I am denying it. Anyhow, she's afraid she's going to lose dad to this fictious person.
Rather than drive to work, I detoured to their house. I sat on the couch and told mom all teh things the doctor said. She thinks the doctor is incompetent though he has worked for MD Anderson. Conversations digress with her rather rapidly. But I hang on. When she gets mad, she gets up and uses her walker and walks to the potty chair in the bedroom. Sure enough, she raised her lift chair and did just that -- and griping about it all the way. She wants dad to have the surgery. I told her that was foolish since he would likely die. She's adamant. I left her on the toilet and went back to the den. I apologized to dad though I don't really know why. I guess I am just sorry that we are all in this mess. But they are so lucky to have me and my sisters. He knows it. Mom doesn't. I hope that if I am in their condition someday that there will be someone to take care of me. But I'm getting off topic here.
So I talked for a few more minutes with dad and then headed to work. I don't know if this welbutrin is starting to work though I think it is. I have anxiety issues at night still... they haven't calmed down yet. I am in a constant state of fog which I attribute to the meds slowly changing up the firing patterns of the synapses in my brain. I don't know if it's better to be dulling the edge or not. I'll give it another week.
The CT showed the mass in his lung has grown about a half inch since January. Dr. H said he isn't quite sure why. The biopsies have not shown cancer but it can't be ruled out. It may be that the fungal infection in his lung is masking a cancer. The only real way -- and we've known this all along -- is to do a surgical biopsy where a wedge of his lung is removed and tested. Dad won't likely survive such a procedure becuase his lung is too brittle. So the 3 options for now are to do surgery (yeah, well not really), do nothing (lt it grow and he'll die from it sooner rather than later), or continue to throw drugs at it and hope something stops it.
Last week, I finally got word from Pfizer that he was approved for the RSVP program and getting the $3k a month drug (60 pills) free through December. His co-pay was nearly $1000 a month so this saves him about $9000 this year.
Anyhow, he's taking vfend (mentioned above). The problem with this infection is that it could be bacterial as well. If that's the case, he needs a steroid. But steroids make fungi grow. So he is getting vfend and a steroid and a low dose antibiotic to help maintain balance. This will likely mess up his stomach in a week or so which means we have to be on the lookout and catch that early if/when it does.
I just called the doc's office a bit ago. Dr. H had said that normally in a lab, the petri dishes are grown 3 days then destroyed. In this case, he wants to grow it out longer to see if anything else shows up. So I was asked to call and remind them to tell the lab to save it. So that's done.
My oh my, life is throwing curve balls. Dad and I are in pretty good shape after all the poking and prodding. He goes home and I head back to work. I am pleased becuase we are ahead of schedule -- only missed 3 hours of work this time. I had forgotten to turn the volume up on my ringer so missed a call. It was mom calling for the doc's report. Unfortunately (or fortunately depending on how you look at it) she forgot to hang up the phone. So I heard the conversation that followed. She was crying and talking about personal things -- like moving to another house. This has been a point of contention with them since they sold their home and Kris sold hers and they all moved in together. It's something mom wanted. But now she wants their own place. And we can't figure out why. She is completely incapable of taking care of herself -- she can't effectively use a fork. She's still in denial about blindness and hoping to regain her vision. I let her hang on to that hope most of the time though sometimes I just want to yell at her to stop with it. But she has nothing else to really cling to. Except all the little nagging things that dad does.
One of those things has to do wtih an affair she has imagined him to have. Lord help us all, this affair supposed happened recently and with a lady from church. Lord help us, did I saw that already? Mom brings this delusion up regularly and it drives us all nuts. Somehow I am the one who told her about it and now I am denying it. Anyhow, she's afraid she's going to lose dad to this fictious person.
Rather than drive to work, I detoured to their house. I sat on the couch and told mom all teh things the doctor said. She thinks the doctor is incompetent though he has worked for MD Anderson. Conversations digress with her rather rapidly. But I hang on. When she gets mad, she gets up and uses her walker and walks to the potty chair in the bedroom. Sure enough, she raised her lift chair and did just that -- and griping about it all the way. She wants dad to have the surgery. I told her that was foolish since he would likely die. She's adamant. I left her on the toilet and went back to the den. I apologized to dad though I don't really know why. I guess I am just sorry that we are all in this mess. But they are so lucky to have me and my sisters. He knows it. Mom doesn't. I hope that if I am in their condition someday that there will be someone to take care of me. But I'm getting off topic here.
So I talked for a few more minutes with dad and then headed to work. I don't know if this welbutrin is starting to work though I think it is. I have anxiety issues at night still... they haven't calmed down yet. I am in a constant state of fog which I attribute to the meds slowly changing up the firing patterns of the synapses in my brain. I don't know if it's better to be dulling the edge or not. I'll give it another week.
Sunday, February 27, 2011
At long last...
Blogger is back up! I don't know what the problem was but any time I tried logging it I was redirecting to some other site. So today it seems to finally be working again. Maybe it was just user error.
Rather than recap what I might or might not have felt over the last couple of weeks, I'll just start fresh on this dreary day. Dark clouds overhead but no rain. Barometric pressure causing the usual spring head ache.
Beatriz, Gaby's sister from Peru, has been here a week. We'll take her back to OKC this coming weekend. In the meantime, it's crazy house as usual. Tonight we'll have the February birthday's at Mom and Dad's. house. That will be interesting. Mom wants us all over but she usually can't handle all the noise so we'll see how long it goes tonight. I hope she's up to it so we can all visit. Dad is doing so much better. He's learned to navigate the power wheelchair from behind so is loading her in the van. He took her for a haircut on Friday. I am glad they still feel like they have their independence a tiny bit. But man I wish he wasn't driving.
The most stressing them for them this week was learning they had to pay in taxes to the tune of $15k. Why? They have no money? Well, they withdrew $$$ from their 401k to pay for drugs and the CNA that comes over during the week. So now they have to take money out to pay taxes and pay taxes even on it. Double taxation without representation. I think maybe we should try to do a little TLC with our government as they are doing elsewhere in the world.
Speaking of the middle east, the price of oil going up is wreaking havor on our December trip to Peru. Air tickets went from $870 on Friday to $1200 today. We didn't buy them because I'm hoping things will calm down. I got a hunch this destination wedding is going to require a loan. Yuck!
And for me, I am having a midlife crisis about retirement. It freaks me out to think that I've passed through 47 years and haven't done half of what I'd thought I would in life. My CPR # is 17.3 and should be below 4. So I'm at high risk for cardiac event. Yay for me. Not. The doc put me on welbutrin to help with anxiety and stress. I don't know if it will work and I really don't want to take the dose the doc prescribed so am taking 2/3 the dose... 1 pill every 12 hours instead of 1 every 8 hours. Maybe it's silly but I don't want to have to wean myself off a med later on and have adverse effects.
Rather than recap what I might or might not have felt over the last couple of weeks, I'll just start fresh on this dreary day. Dark clouds overhead but no rain. Barometric pressure causing the usual spring head ache.
Beatriz, Gaby's sister from Peru, has been here a week. We'll take her back to OKC this coming weekend. In the meantime, it's crazy house as usual. Tonight we'll have the February birthday's at Mom and Dad's. house. That will be interesting. Mom wants us all over but she usually can't handle all the noise so we'll see how long it goes tonight. I hope she's up to it so we can all visit. Dad is doing so much better. He's learned to navigate the power wheelchair from behind so is loading her in the van. He took her for a haircut on Friday. I am glad they still feel like they have their independence a tiny bit. But man I wish he wasn't driving.
The most stressing them for them this week was learning they had to pay in taxes to the tune of $15k. Why? They have no money? Well, they withdrew $$$ from their 401k to pay for drugs and the CNA that comes over during the week. So now they have to take money out to pay taxes and pay taxes even on it. Double taxation without representation. I think maybe we should try to do a little TLC with our government as they are doing elsewhere in the world.
Speaking of the middle east, the price of oil going up is wreaking havor on our December trip to Peru. Air tickets went from $870 on Friday to $1200 today. We didn't buy them because I'm hoping things will calm down. I got a hunch this destination wedding is going to require a loan. Yuck!
And for me, I am having a midlife crisis about retirement. It freaks me out to think that I've passed through 47 years and haven't done half of what I'd thought I would in life. My CPR # is 17.3 and should be below 4. So I'm at high risk for cardiac event. Yay for me. Not. The doc put me on welbutrin to help with anxiety and stress. I don't know if it will work and I really don't want to take the dose the doc prescribed so am taking 2/3 the dose... 1 pill every 12 hours instead of 1 every 8 hours. Maybe it's silly but I don't want to have to wean myself off a med later on and have adverse effects.
Thursday, February 10, 2011
Mom's turn
You'd think that Dad is the only person we help out. That couldn't be anywhere near true! For the last 10.5 years we have a disabled mother. Her doctor's visits have been plentiful. I've taken her to 4 in the last month and Lori has taken her to the dentist and for shots prior to dental work.
Here's a recap of our doctor's visit this past Monday. First of all, I couldn'tCouldn’t use the drop off drive so had to park and push her up the hill and inside. Our first stop was the lab. Nobody told us she needed a urinalysis! Grrr! She'd already emptied her bladder before we loaded her up in the van AND collecting a urine sample from someone who can't stand very well or use a public stall very well is not easy. So we got the cup and label and will do it at home and return it. One stop down, one to go.
Why oh why don't these desks talk to each other! Every year every time we see a doc for the first time we have to do everything from scratch. They are in the same building and have computers. Come on, administrators, get with the program. Mom had difficulty with her phone number and address. She got the numbers transposed. Our wait wasn't too bad.
The nurse for the eye exam determined mom can see the outline of fingers/hands if held about 12 – 18 inches in front of her face – head level. Not side to side. Not up or down. She didn’t say anything just when testing that is where mom’s field of vision was. And she can’t distinguish much unless there is a contrast (dark/light).
Between the nurse and the doc, I was making small talk about a study I read this past week about brain function in Alzheimer’s patients. They study said playing brain games is helpful to keep from losing brain as quickly. Things like spelling bees and multiplication tables are popular with patients who have little ability to use their body. I told mom that’s something she could do to increase her brain power and stimulate her occipital nerves and lobes. She said she wants someone to read to her. I asked read what. She said the church bulletin but it is always thrown away before Mona can read it to her. She then said that’s all. I told her that Mona can read to her but she said Mona doesn’t like to read. I said oh well… listening to someone read is passive anyhow and won’t really do much for your brain.
Dr. Greer came in and reviewed her records then examined her eyes. She told him that everything is darker or dimmer than it used to be, that she tells dad the bedroom is too dark but he says it’s the same as it was. He told her as he did last time (but he was very polite) that the occipital lobes on both sides were impacted by the stroke (really, I just talked about the occipital lobes). Her eyes themselves are healthy. But the brain doesn’t read the signals that are transmitted to that part of her brain. She asked his nurse earlier and then asked him as well about stem cells. He told her that would be a question for her neurologist not him but as far as he knew there was no such treatment or research going on. He told her “I’m sorry, honey, but there isn’t any.” Very sweet to her and called her honey a few times. When he was about done, I interjected “Mom, you wanted to tell him about the feeling of sand in yours eyes since you are having to rub, use eye drops, and have dad blow in your eye.” She kind of snapped at me that does only blows in her eye when she thinks there is a hair in it. Dr. Greer said that is all dry eye issues and wrote down an OTC eye drop that she should use. He said if you get in the habit of doing them 4x daily, you don’t end up with the scratchy stuff as often. So he wrote it down and handed it to me. He told her he’d see her again in a year. And then he turned to me and said …. And I wish I had it on tape….. “thank you, you are a good caregiver.” I’ll be damned – someone other than the nail lady finally said that. He’s a saint now in my book!
I got mom’s jacket back on her, made her next appointment and all the other stuff related to going out. This time at least the push was down a hill rather than up. Much easier go down than up! When we arrived at the van some um... well.... stinker parked in the boxed/lined off section for ramps. The vehicle displayed a handicap tag and was full of crap cluttered but a decent model. I had to lift her over the edge (though she didn’t seem to notice) and lean on the car to push her in. I then got a Wal-Mart receipt out of my purse and wrote “sorry if I scratched your car but you parked too close and we couldn’t use the ramp properly.” Made me feel better and I think I left a wheel rub mark on the door. Anyhow, Mom then says – what did you put on the car? I said “you saw that – how?” She said my black coat against the white car gave her enough of an image. I told her it was a note not to park on the area for ramps.
I asked what she wanted for lunch and she hem hawed around about not wanting anything and then I asked what she would have at home and she said I don’t know. I said well I was getting you lunch so tell me what you’d like. She didn’t know and I told her all the places. I finally pulled over in a parking lot and called dad. He remember the big sandwich that Kris had bought and suggested it. Mom said she’d eat PB crackers and dad cursed in the phone when he heard it. So I asked him and he finally said a burger from Sonic. I asked about a chili cheese dog and he said oh, yeah, that sounds great. Mom said she’d eat onion rings. So I got to Sonic and get the order and their debit thing isn’t working but finally it did and we get home and I unload her. BLAH….. I bring in all the food and we all sit down. Mona with her rings, mom with her rings, dad with his coney and malt, and me with a burger and rings. First thing mom says is “they cooked these in fish oil.” I said “oh man, are they not good?” I bit into mine and they were find so I said so. She said no, they cooked them in fish oil but I’ll eat them.
She asked dad where he onion rings were. He put her hand on them. I asked her if she could see the onion rings if she held it out from her face. She said no. But she wasn’t looking down at them she was looking straight ahead. I said how about if you looked down so they are directly in your line of sight. She said she was not going to bend her head down because her neck hurt. I said ok, how about lifting up a ring and sticking it out from your face. She did it a few times but never answered me.
Then she asked dad if the chili on the coney was any good. He said not as good as the Sonic on Greenwood… I said well I didn’t know they were different so Mom said so and so’s relative worked there and they made their own chili and it was good. I said next time I’ll get the chili dog from that one then. Dad said it was pretty good. It’s the new quarter lb coney and he ate every bite. Then started on his malt. While sitting there, mom started in on purchasing a new van. I said “ you don’t need a new van… that one is perfectly fine.” She said she needed a lift. I told her that was foolish because we could load and unload. I told her she was like a kid at Christmas, as soon as she got a new toy it wasn’t good enough and she wanted something else. She said she wasn’t but that the van was no longer practical since she couldn't see. Mom thought she goes this week for protime and dad told her no. She was then saying she needed to call Dr. Swicegood to see if they have any cancellations so she can get her shot in her neck. I told her to be sure it was when Mona could load her or we could help or the kids could.
She then decided it was time to get her feet up so Dad scooted out of the way so she could get to the den. Mom calls out that she wanted to drink some of that tart cherry juice because Dr. Oz was talking about it again. So I made her a drink. I visited with Dad a bit and asked if he was full. He said ye was. I told him to be sure and get someone to help load mom if she goes to Swicegood sooner than next week. Mona was reading the obits to her when I left.
And that is how a good visit goes.
Here's a recap of our doctor's visit this past Monday. First of all, I couldn'tCouldn’t use the drop off drive so had to park and push her up the hill and inside. Our first stop was the lab. Nobody told us she needed a urinalysis! Grrr! She'd already emptied her bladder before we loaded her up in the van AND collecting a urine sample from someone who can't stand very well or use a public stall very well is not easy. So we got the cup and label and will do it at home and return it. One stop down, one to go.
Why oh why don't these desks talk to each other! Every year every time we see a doc for the first time we have to do everything from scratch. They are in the same building and have computers. Come on, administrators, get with the program. Mom had difficulty with her phone number and address. She got the numbers transposed. Our wait wasn't too bad.
The nurse for the eye exam determined mom can see the outline of fingers/hands if held about 12 – 18 inches in front of her face – head level. Not side to side. Not up or down. She didn’t say anything just when testing that is where mom’s field of vision was. And she can’t distinguish much unless there is a contrast (dark/light).
Between the nurse and the doc, I was making small talk about a study I read this past week about brain function in Alzheimer’s patients. They study said playing brain games is helpful to keep from losing brain as quickly. Things like spelling bees and multiplication tables are popular with patients who have little ability to use their body. I told mom that’s something she could do to increase her brain power and stimulate her occipital nerves and lobes. She said she wants someone to read to her. I asked read what. She said the church bulletin but it is always thrown away before Mona can read it to her. She then said that’s all. I told her that Mona can read to her but she said Mona doesn’t like to read. I said oh well… listening to someone read is passive anyhow and won’t really do much for your brain.
Dr. Greer came in and reviewed her records then examined her eyes. She told him that everything is darker or dimmer than it used to be, that she tells dad the bedroom is too dark but he says it’s the same as it was. He told her as he did last time (but he was very polite) that the occipital lobes on both sides were impacted by the stroke (really, I just talked about the occipital lobes). Her eyes themselves are healthy. But the brain doesn’t read the signals that are transmitted to that part of her brain. She asked his nurse earlier and then asked him as well about stem cells. He told her that would be a question for her neurologist not him but as far as he knew there was no such treatment or research going on. He told her “I’m sorry, honey, but there isn’t any.” Very sweet to her and called her honey a few times. When he was about done, I interjected “Mom, you wanted to tell him about the feeling of sand in yours eyes since you are having to rub, use eye drops, and have dad blow in your eye.” She kind of snapped at me that does only blows in her eye when she thinks there is a hair in it. Dr. Greer said that is all dry eye issues and wrote down an OTC eye drop that she should use. He said if you get in the habit of doing them 4x daily, you don’t end up with the scratchy stuff as often. So he wrote it down and handed it to me. He told her he’d see her again in a year. And then he turned to me and said …. And I wish I had it on tape….. “thank you, you are a good caregiver.” I’ll be damned – someone other than the nail lady finally said that. He’s a saint now in my book!
I got mom’s jacket back on her, made her next appointment and all the other stuff related to going out. This time at least the push was down a hill rather than up. Much easier go down than up! When we arrived at the van some um... well.... stinker parked in the boxed/lined off section for ramps. The vehicle displayed a handicap tag and was full of crap cluttered but a decent model. I had to lift her over the edge (though she didn’t seem to notice) and lean on the car to push her in. I then got a Wal-Mart receipt out of my purse and wrote “sorry if I scratched your car but you parked too close and we couldn’t use the ramp properly.” Made me feel better and I think I left a wheel rub mark on the door. Anyhow, Mom then says – what did you put on the car? I said “you saw that – how?” She said my black coat against the white car gave her enough of an image. I told her it was a note not to park on the area for ramps.
I asked what she wanted for lunch and she hem hawed around about not wanting anything and then I asked what she would have at home and she said I don’t know. I said well I was getting you lunch so tell me what you’d like. She didn’t know and I told her all the places. I finally pulled over in a parking lot and called dad. He remember the big sandwich that Kris had bought and suggested it. Mom said she’d eat PB crackers and dad cursed in the phone when he heard it. So I asked him and he finally said a burger from Sonic. I asked about a chili cheese dog and he said oh, yeah, that sounds great. Mom said she’d eat onion rings. So I got to Sonic and get the order and their debit thing isn’t working but finally it did and we get home and I unload her. BLAH….. I bring in all the food and we all sit down. Mona with her rings, mom with her rings, dad with his coney and malt, and me with a burger and rings. First thing mom says is “they cooked these in fish oil.” I said “oh man, are they not good?” I bit into mine and they were find so I said so. She said no, they cooked them in fish oil but I’ll eat them.
She asked dad where he onion rings were. He put her hand on them. I asked her if she could see the onion rings if she held it out from her face. She said no. But she wasn’t looking down at them she was looking straight ahead. I said how about if you looked down so they are directly in your line of sight. She said she was not going to bend her head down because her neck hurt. I said ok, how about lifting up a ring and sticking it out from your face. She did it a few times but never answered me.
Then she asked dad if the chili on the coney was any good. He said not as good as the Sonic on Greenwood… I said well I didn’t know they were different so Mom said so and so’s relative worked there and they made their own chili and it was good. I said next time I’ll get the chili dog from that one then. Dad said it was pretty good. It’s the new quarter lb coney and he ate every bite. Then started on his malt. While sitting there, mom started in on purchasing a new van. I said “ you don’t need a new van… that one is perfectly fine.” She said she needed a lift. I told her that was foolish because we could load and unload. I told her she was like a kid at Christmas, as soon as she got a new toy it wasn’t good enough and she wanted something else. She said she wasn’t but that the van was no longer practical since she couldn't see. Mom thought she goes this week for protime and dad told her no. She was then saying she needed to call Dr. Swicegood to see if they have any cancellations so she can get her shot in her neck. I told her to be sure it was when Mona could load her or we could help or the kids could.
She then decided it was time to get her feet up so Dad scooted out of the way so she could get to the den. Mom calls out that she wanted to drink some of that tart cherry juice because Dr. Oz was talking about it again. So I made her a drink. I visited with Dad a bit and asked if he was full. He said ye was. I told him to be sure and get someone to help load mom if she goes to Swicegood sooner than next week. Mona was reading the obits to her when I left.
And that is how a good visit goes.
Sunday, February 6, 2011
Another day, another set of biopsies
Thursday morning came and went without much fanfare. That is a miracle in a number of ways. The greatest of all was that Dad's lung didn't collapse. We were prepared for it to as it has for the last 3 years each time it gets a chance. But this time it didn't. I even parked on the other side of the hospital anticipating leaving from an in-patient room as has always been the case. Lucky for Dad and me, Lori was relieving me at noon and was able to take him home (and me to my car) instead of pulling a shift of doctor watching.
That's pretty remarkable. The other part of that whole miracle conversation is that we've had snow and ice every day except Thursday. So we managed to get Dad to the hospital and back home safely.
Mom is loopy today. Sometimes it's hard to tell though if she is really loopy or just trying to carry on a conversation when she isn't able to judge her surroundings. I take her to the Doc tomorrow for an eye test (seems odd since she is legally blind) then to get lab work done and then back to work.
I'm not looking for sympathy but I sure am tired of people whining about their situation when they've no idea how good they have it compared to me. To only have 1 seriously ill aging parent and a parent who can caregive would be a blessing. To have only 1 aging but pain-in-the-butt still living independently parent would be a blessing. But we all seem to think our own predicament is the worst. Ours is probably as bad a scenario as it can get -- my doc told me that much when discussing her own mother's death from Alzheimer's. But we dodged a bullet with my dad being released rather than admitted last Thursday. When you have 2 parents who need 24/7 care, life is hell. When those 2 parents are in 2 different places, it is inexplicably hard.
That's pretty remarkable. The other part of that whole miracle conversation is that we've had snow and ice every day except Thursday. So we managed to get Dad to the hospital and back home safely.
Mom is loopy today. Sometimes it's hard to tell though if she is really loopy or just trying to carry on a conversation when she isn't able to judge her surroundings. I take her to the Doc tomorrow for an eye test (seems odd since she is legally blind) then to get lab work done and then back to work.
I'm not looking for sympathy but I sure am tired of people whining about their situation when they've no idea how good they have it compared to me. To only have 1 seriously ill aging parent and a parent who can caregive would be a blessing. To have only 1 aging but pain-in-the-butt still living independently parent would be a blessing. But we all seem to think our own predicament is the worst. Ours is probably as bad a scenario as it can get -- my doc told me that much when discussing her own mother's death from Alzheimer's. But we dodged a bullet with my dad being released rather than admitted last Thursday. When you have 2 parents who need 24/7 care, life is hell. When those 2 parents are in 2 different places, it is inexplicably hard.
Saturday, January 29, 2011
Catching up
Rats! And thank goodness! I've been blocked out of this blog site for around 2 weeks. I finally broke in today thought I don't know how it happened. There was a redirect that was occurring as I tried logging in and I'd end up at some other sight. Not quite a virus or anything vulgar... just not the right place.
So catching my breath this Saturday morning. I think it's been 2 weeks or so since I posted. In that time, Dad has managed to stay reasonably healthy. Mom is having depression issues. They seem to be talking in code about dying but it's not hard to figure it out especially when Mom talks about "the plan." We're doing all we can to keep them comfortable and entertained but it isn't easy. Dad goes in for a needle biopsy on Feb 3 at 6:30 am. The docs expect his lung to collapse and to have to use a chest tube so we've been told to anticipate a 2 or 3 day hospital stay. Ok. I can deal with that as long as I know going in.
My doctoral work is challenging but I'm having trouble focusing. I have met all the deadlines so far this semester but have 2 papers due tomorrow so will be up late tonight working on them. I also have class today for our Peru trip. This weekend is a relief for me. This past week began my excruciatingly complex 10 week schedule of teaching for a Belgium company with locations here and north in Rogers AR. I start at 5 am on Tuesdays and finish at 8 pm on Thursdays. I felt bad for my students Thursday night because I was clearly spent and the energy they normally would get just wasn't anywhere to be found. I am taking off on Fridays 8 of the next 10 weeks since I'm also working Saturdays.
So my Friday yesterday was spectaculr. It was 70 degrees! Jill and her bf Adam took our 2 Westies and his Shitzu-Bichon to the dog park. I took Dad for a bit so he could see them in action. Our dog park is a wonderful 35 acre property with a small lake. The dogs have a great time though they always need a bath afterwards. He enjoyed sitting on a bench with Izzie up on the bench with him. Then we drove out through Fort Chaffee to see the new construction from Mitsubishi, Mars Petcare (Ceasar dog food), Umarex air guns, PRADCO outdoor brands and another new company. He'd hadn't been through there in years and seemed to enjoy the tour. I even had to slow down a few times for him to look at the construction project cutting the new interstate through the area. After we were done, we picked up Mom and went for manicure. Mom wanted Dad to have one as well. Then we picked up a new script at the pharmacy and went home. No bickering or whining or any of the sort. It was really a nice day.
I saw my own doc yesterday. Well, it wasn't the doc but the nurse practitioner. I told her my doc had said that I was stout enough to survive a nuclear blast in spite of being overweight. She said I AM surviving a nuclear blast every day with the stress I have. Ha! I told her that the emotions are barely able to be contained and always just under the surface. She suggested instead of taking a Lunesta at bed time I consider using an antidepressant for short term. So I'm going to pick up that script for me today. I hope it helps but doesn't make me foggy.
Today is to be a repeat of the weather yesterday but then rain and snow are back in the forecast this week.
Derek and Gaby have their save the date cards designed and will be printed and mailed by next weekend. When I go to OKC next Saturday, we'll go wedding dress shopping. Thank goodness I have the happiness around our May Inca trip to Peru, planning a wedding, and the wedding trip to Peru in December to give me happy thoughts. Oh, and that nice afternoon yesterday. Rare days like that surely are diamonds.
So catching my breath this Saturday morning. I think it's been 2 weeks or so since I posted. In that time, Dad has managed to stay reasonably healthy. Mom is having depression issues. They seem to be talking in code about dying but it's not hard to figure it out especially when Mom talks about "the plan." We're doing all we can to keep them comfortable and entertained but it isn't easy. Dad goes in for a needle biopsy on Feb 3 at 6:30 am. The docs expect his lung to collapse and to have to use a chest tube so we've been told to anticipate a 2 or 3 day hospital stay. Ok. I can deal with that as long as I know going in.
My doctoral work is challenging but I'm having trouble focusing. I have met all the deadlines so far this semester but have 2 papers due tomorrow so will be up late tonight working on them. I also have class today for our Peru trip. This weekend is a relief for me. This past week began my excruciatingly complex 10 week schedule of teaching for a Belgium company with locations here and north in Rogers AR. I start at 5 am on Tuesdays and finish at 8 pm on Thursdays. I felt bad for my students Thursday night because I was clearly spent and the energy they normally would get just wasn't anywhere to be found. I am taking off on Fridays 8 of the next 10 weeks since I'm also working Saturdays.
So my Friday yesterday was spectaculr. It was 70 degrees! Jill and her bf Adam took our 2 Westies and his Shitzu-Bichon to the dog park. I took Dad for a bit so he could see them in action. Our dog park is a wonderful 35 acre property with a small lake. The dogs have a great time though they always need a bath afterwards. He enjoyed sitting on a bench with Izzie up on the bench with him. Then we drove out through Fort Chaffee to see the new construction from Mitsubishi, Mars Petcare (Ceasar dog food), Umarex air guns, PRADCO outdoor brands and another new company. He'd hadn't been through there in years and seemed to enjoy the tour. I even had to slow down a few times for him to look at the construction project cutting the new interstate through the area. After we were done, we picked up Mom and went for manicure. Mom wanted Dad to have one as well. Then we picked up a new script at the pharmacy and went home. No bickering or whining or any of the sort. It was really a nice day.
I saw my own doc yesterday. Well, it wasn't the doc but the nurse practitioner. I told her my doc had said that I was stout enough to survive a nuclear blast in spite of being overweight. She said I AM surviving a nuclear blast every day with the stress I have. Ha! I told her that the emotions are barely able to be contained and always just under the surface. She suggested instead of taking a Lunesta at bed time I consider using an antidepressant for short term. So I'm going to pick up that script for me today. I hope it helps but doesn't make me foggy.
Today is to be a repeat of the weather yesterday but then rain and snow are back in the forecast this week.
Derek and Gaby have their save the date cards designed and will be printed and mailed by next weekend. When I go to OKC next Saturday, we'll go wedding dress shopping. Thank goodness I have the happiness around our May Inca trip to Peru, planning a wedding, and the wedding trip to Peru in December to give me happy thoughts. Oh, and that nice afternoon yesterday. Rare days like that surely are diamonds.
Friday, January 14, 2011
My what a difference a day can make
Just as I finished that last post, Dad was taken by Kris to ER. He had problems breathing and was very week. Turns out he is anemic and needed 2 unites of blood. He ended up staying until being discharged at 10:15 pm -- yes pm -- yesterday.
Dr. A conducted another bronchoscopy because the CT showed the mass in his lung had grown. It's now at 4.5 cm. The doc had a few samples and located the mass behind his airway. That makes it hard to get to. But Dad isn't a candidate for surgery anyhow.
Jill is being so so helpful. She took care of Mom last night putting her to bed. Today she's gotten the 5 new scripts filled, checked on problems with dad's pulse-ox reader, did their banking, and hung out a bit to be sure they were doing ok.
Wow our next week is scary! I teach for Owens Corning Monday - Friday from 8 - 5 with no lunch break. Lunches are in the classroom as part of a "working meeting." YUCK! But the really frustrating part is that I am the one who goes to the docs with Dad and he now has 1 lab and 2 doc appointments next week. Mom has 2 doc appointments but Lori takes her to those. The following Monday Mom has 1 more doc appointment and I take her to that doc.
People who don't have seriously or acutely ill parents have no comprehension of the strain it creates. I could talk about the emotional strain but I've done that now for weeks. I could mention the physical strain as well -- and that most of us end up in poor health (e.g. my Dad now) as a result. There's also the time strain as you figure out what in your old life you can eliminate to make time for the new demands. Then there is the financial strain. The cost of the illness can be measured in dollars for meds or dollars for co-pay's. But it can also be measured in lost productivity. I missed 11 hours of work this week. I'm salaried so technically my check won't be short. But I have a heavy workload. That trade off shows up on Saturday or Sunday when I'll work all day at the office or tote it all home and work from there.
On a lighter note, I am so happy to hear that Herman Cain is thinking about running for president. I love that man and could listen to him all day long. He's brilliant and business savvy and a man with a good heart. Now The Donald is not only list of exciting possible contenders. But it's shaping up to be an interesting election cycle. I look forward to hearing from Herman the next few months and hope the American voters will too.
The day is winding down. I should pack up so I can tote all that stuff home. I have 2 grueling weeks ahead. As I told Derek this morning, however, the 2 trips to Peru are the light in my day. And helping Gab plan a yet unannounced wedding is already shaping up to be loads of fun. Oh yeah, remember financial strain in that paragraph above? Um. Yeah.
Dr. A conducted another bronchoscopy because the CT showed the mass in his lung had grown. It's now at 4.5 cm. The doc had a few samples and located the mass behind his airway. That makes it hard to get to. But Dad isn't a candidate for surgery anyhow.
Jill is being so so helpful. She took care of Mom last night putting her to bed. Today she's gotten the 5 new scripts filled, checked on problems with dad's pulse-ox reader, did their banking, and hung out a bit to be sure they were doing ok.
Wow our next week is scary! I teach for Owens Corning Monday - Friday from 8 - 5 with no lunch break. Lunches are in the classroom as part of a "working meeting." YUCK! But the really frustrating part is that I am the one who goes to the docs with Dad and he now has 1 lab and 2 doc appointments next week. Mom has 2 doc appointments but Lori takes her to those. The following Monday Mom has 1 more doc appointment and I take her to that doc.
People who don't have seriously or acutely ill parents have no comprehension of the strain it creates. I could talk about the emotional strain but I've done that now for weeks. I could mention the physical strain as well -- and that most of us end up in poor health (e.g. my Dad now) as a result. There's also the time strain as you figure out what in your old life you can eliminate to make time for the new demands. Then there is the financial strain. The cost of the illness can be measured in dollars for meds or dollars for co-pay's. But it can also be measured in lost productivity. I missed 11 hours of work this week. I'm salaried so technically my check won't be short. But I have a heavy workload. That trade off shows up on Saturday or Sunday when I'll work all day at the office or tote it all home and work from there.
On a lighter note, I am so happy to hear that Herman Cain is thinking about running for president. I love that man and could listen to him all day long. He's brilliant and business savvy and a man with a good heart. Now The Donald is not only list of exciting possible contenders. But it's shaping up to be an interesting election cycle. I look forward to hearing from Herman the next few months and hope the American voters will too.
The day is winding down. I should pack up so I can tote all that stuff home. I have 2 grueling weeks ahead. As I told Derek this morning, however, the 2 trips to Peru are the light in my day. And helping Gab plan a yet unannounced wedding is already shaping up to be loads of fun. Oh yeah, remember financial strain in that paragraph above? Um. Yeah.
Monday, January 10, 2011
Nicer times
In spite of the circumstances, we had a good weekend. My mom's brother-in-law is headed to Duke for assessment for lung transplant. Saturday evening, Lori took Mom and Dad to Mass with this uncle and his wife as well as a handful of other family members. It did my parents wonders to get out of the house! Yesterday I ran by after Derek and his crew had headed back to OKC in the snow. I was visiting with everyone and sharing cookies from Peru. These little cookies were hand made and iced by 9-yr old Luciana who is adorable with a capital A. Mom really liked the flavor so we're going to get the recipe if Luciana will share it.
As I visited about the upcoming week, they ran out of Poppycock popcorn. The snow had started to come down pretty steadily so I offered to venture out to the one nearby store that sold it. I got 8 bags! I know they don't need that much today but I told Dad that if it made Mom happy to know she had that much on reserve, that's fine with me. I also found a great deal on another of their favorite candies. When I returned Dad was lighting the fireplace. Mom's started to have some visual sensations though we aren't sure exactly to what extent. The fireplace opening is a half moon (very pretty) so he had one side shut and asked if she could see a fire. And she correctly said there is light on that sad and pointed the right way! But she couldn't make out it was flames. But that's good!
We reviewed the plans for the doc visits for the week. Mom has a protime today but since it has snowed and many offices are closed, I think Lori will reschedule it. Dad has an appt tomorrow with Dr. A. I teach 6 am - 10 am in Van Buren so will drive like a bat out of you-know-where to get back to Fort Smith, pick him up, and get to the appointment. I'd planned to take Mom which would have added more time to the trip but the weather has caused her to opt out of going.
Mom and Dad were both very much in good spirits. They talked about Derek's wedding plans and that he'd given the wedding planner $8,000 (which comes to $24,000 Soles) and hoped that would cover all the stuff in Peru. Gaby asked me to shop with her for a dress here in the states so that she has it to take with her rather than trying to find one there on a short notice. We also have started working on the U.S. reception and started picking out cakes.
That kind of talk was fun for them.
So a good day...
As I visited about the upcoming week, they ran out of Poppycock popcorn. The snow had started to come down pretty steadily so I offered to venture out to the one nearby store that sold it. I got 8 bags! I know they don't need that much today but I told Dad that if it made Mom happy to know she had that much on reserve, that's fine with me. I also found a great deal on another of their favorite candies. When I returned Dad was lighting the fireplace. Mom's started to have some visual sensations though we aren't sure exactly to what extent. The fireplace opening is a half moon (very pretty) so he had one side shut and asked if she could see a fire. And she correctly said there is light on that sad and pointed the right way! But she couldn't make out it was flames. But that's good!
We reviewed the plans for the doc visits for the week. Mom has a protime today but since it has snowed and many offices are closed, I think Lori will reschedule it. Dad has an appt tomorrow with Dr. A. I teach 6 am - 10 am in Van Buren so will drive like a bat out of you-know-where to get back to Fort Smith, pick him up, and get to the appointment. I'd planned to take Mom which would have added more time to the trip but the weather has caused her to opt out of going.
Mom and Dad were both very much in good spirits. They talked about Derek's wedding plans and that he'd given the wedding planner $8,000 (which comes to $24,000 Soles) and hoped that would cover all the stuff in Peru. Gaby asked me to shop with her for a dress here in the states so that she has it to take with her rather than trying to find one there on a short notice. We also have started working on the U.S. reception and started picking out cakes.
That kind of talk was fun for them.
So a good day...
Monday, January 3, 2011
Nobody's home
Today was my first day back at work. It was one of those kind when the boss says nothing right and everything wrong. For instance, observing that my mother's quality of life is so poor that she'd be better off gone. You see, that's not something anyone else has a right to say. Sure, I can. My sisters might. But please, don't tell me that unless you're with me on the journey. To make matters worse, I think she tried to be empathetic by talking about how her own mother is driving her nuts. Her mothers is in her 80's and lives with my boss. She's had a small cancer remvoed from her leg and her vision in one of her eyes is greatly diminished. I couldn't help but finally say thank goodness for you that she can still move on her own and has vision. For Pete's sake, either one of those two life functions is monumental.
It had been planned for me to take my dad to the doc today and then on to another clinic for blood work. When I arrived to pick him up and help load my mother so she could go along, nobody answered the door. I knocked and rang the bell. All the while I was thinking how much I needed to do at work. I called the house number and it rang. I called my dad's cell and he answered as nonchalantly as ever saying they were at the doctor's office. I was stupefied. So I got in my car and headed over to the doc. They'd arrived nearly an hour early via my mom's brother. This brother hates established medicine and was a little vocal with"hell" and "shit" and such. He thinks most doctors are quacks and over prescribe meds. But my parents were in a jovial tone with him. He asked what I was doing there and I told him we always go to the appointments with them. I had my clipboard with all my dad's meds on it, his current medical issues, etc. I also had the sheet for his labwork orders.
Although my uncle was a dear for helping out, I got the impression I was the enemy. My parents started talking about ordering drugs from Canada, dad skipping his dose for a month or two until they got it worked out, and so on. This uncle wasn't aware that they were seeing a cardiologist for congestive heart failure but that he also needed the lab work for his pulmonologist who is treating his COPD and enphysemia as well as the infectious disease doc for the aspergilleosis. For God's sake, if it was just 1 doctor we wouldn't be exhausted!
I found it odd that as we sat in the waiting room, the 3 of them took to discussing the ills of others. This person has it so bad. That person is in poor health. I finally chimed in that if they truth was told, Dad was in at least as poor shape as the ones they were talking about. Oh no, they all added, that just wasn't the case.
I wanted to scream and cry. I'd watched my dad fight for his life and over these last 94 days, nearly 20 days of it was on ventilators and life support and over half of it in the hospital. What don't they get? Mom can't see so I give her a little slack. But my uncle? He saw my dad on the vent. I remember the frightening things Dad told me during his ICU psychosis. Maybe they are just trying to create a sensation of others having it worse. I don't know but I am tired of it.
When we were called back to the exam room, my parents were a cute old couple. The good doc told my dad that his peptides were up indicating he'd had a heart "event" while he was on the vent and probably had another "event" the week before last. He said that Dad's hear is still at 45% output but that is the same as it was in 2005. He told Dad that he would not survive any procedure to treat the leaky valve and that the lungs are the real issue. He looked at me and talked about Dad having been on the vent and in ICU so much and that "you've all been through so much" and how he wishes he could wave a magic wand and correct it all. How sweet -- someone finally acknowledged my sisters and me. He told Dad and Mom that both of them should be thankful for each day they wake up and live it to the fullest as best they can. He indicated the situation was grim. He told my dad that he had no restrictions other than avoiding extreme temperatures. I asked about pushing Mom up/down the ramp. The Doc said absolutely not because the would trigger a heart event. He then said anything that causes shortness of breath must be avoided.
The doc talked about Canadian meds. He's still licensed in Canada so can legally dispense such but said the exchange rate is no longer favorable enough to make it worthwhile AND that this is such a delicate issue (aspergilliosis) that it must be followed with lab work monthly. Before we left, Dad gave the doc a tin of high end holiday candy and nuts. It was so sweet. My parents always do that for the docs. Even this year when money is tight and minds are fleeting, they remembered the gifts for the docs.
We made the follow up appointments. I realized we are taking mom to the doctor every week for the next 4 weeks and then dad the 2 weeks that follow that.
Because my uncle had ridden along, we now had to go back to the house to drop him off and dropped Mom off as well. Then I took Dad to the lab for his bloodwork. We talked to Dr. A's nurse about the VFend refill as well as the Pfizer RSVP program. She's to call me tomorrow with updates. As we were leaving, Dad remarked how nice it was to be literally outside instead of in the house. Poor thing. He's so busy caring for mom and too weak to venture far. Pop didn't remember any of our plans for the day -- he's taken to keeping a paper calendar in his pocket. As he got in the car with his large O2 tank, I noticed he had a flashlight in his hip pocket. My poor Pop. I wonder what he thought he needed that for.
Thank you, God, for giving me Lori. When either of us melts we can count on the other to lift us up. And she was doing lots of heavy lifting today. She talked to me the whole way back to work and then called me when I was back at my office to talk some more. I had to stay late to make up the work I'd missed. But another day is in the record books. And Kris won't have to hear any of this. Her burden begins when she returns "home" from work each day. I hope she has a better night than I did day.
It had been planned for me to take my dad to the doc today and then on to another clinic for blood work. When I arrived to pick him up and help load my mother so she could go along, nobody answered the door. I knocked and rang the bell. All the while I was thinking how much I needed to do at work. I called the house number and it rang. I called my dad's cell and he answered as nonchalantly as ever saying they were at the doctor's office. I was stupefied. So I got in my car and headed over to the doc. They'd arrived nearly an hour early via my mom's brother. This brother hates established medicine and was a little vocal with"hell" and "shit" and such. He thinks most doctors are quacks and over prescribe meds. But my parents were in a jovial tone with him. He asked what I was doing there and I told him we always go to the appointments with them. I had my clipboard with all my dad's meds on it, his current medical issues, etc. I also had the sheet for his labwork orders.
Although my uncle was a dear for helping out, I got the impression I was the enemy. My parents started talking about ordering drugs from Canada, dad skipping his dose for a month or two until they got it worked out, and so on. This uncle wasn't aware that they were seeing a cardiologist for congestive heart failure but that he also needed the lab work for his pulmonologist who is treating his COPD and enphysemia as well as the infectious disease doc for the aspergilleosis. For God's sake, if it was just 1 doctor we wouldn't be exhausted!
I found it odd that as we sat in the waiting room, the 3 of them took to discussing the ills of others. This person has it so bad. That person is in poor health. I finally chimed in that if they truth was told, Dad was in at least as poor shape as the ones they were talking about. Oh no, they all added, that just wasn't the case.
I wanted to scream and cry. I'd watched my dad fight for his life and over these last 94 days, nearly 20 days of it was on ventilators and life support and over half of it in the hospital. What don't they get? Mom can't see so I give her a little slack. But my uncle? He saw my dad on the vent. I remember the frightening things Dad told me during his ICU psychosis. Maybe they are just trying to create a sensation of others having it worse. I don't know but I am tired of it.
When we were called back to the exam room, my parents were a cute old couple. The good doc told my dad that his peptides were up indicating he'd had a heart "event" while he was on the vent and probably had another "event" the week before last. He said that Dad's hear is still at 45% output but that is the same as it was in 2005. He told Dad that he would not survive any procedure to treat the leaky valve and that the lungs are the real issue. He looked at me and talked about Dad having been on the vent and in ICU so much and that "you've all been through so much" and how he wishes he could wave a magic wand and correct it all. How sweet -- someone finally acknowledged my sisters and me. He told Dad and Mom that both of them should be thankful for each day they wake up and live it to the fullest as best they can. He indicated the situation was grim. He told my dad that he had no restrictions other than avoiding extreme temperatures. I asked about pushing Mom up/down the ramp. The Doc said absolutely not because the would trigger a heart event. He then said anything that causes shortness of breath must be avoided.
The doc talked about Canadian meds. He's still licensed in Canada so can legally dispense such but said the exchange rate is no longer favorable enough to make it worthwhile AND that this is such a delicate issue (aspergilliosis) that it must be followed with lab work monthly. Before we left, Dad gave the doc a tin of high end holiday candy and nuts. It was so sweet. My parents always do that for the docs. Even this year when money is tight and minds are fleeting, they remembered the gifts for the docs.
We made the follow up appointments. I realized we are taking mom to the doctor every week for the next 4 weeks and then dad the 2 weeks that follow that.
Because my uncle had ridden along, we now had to go back to the house to drop him off and dropped Mom off as well. Then I took Dad to the lab for his bloodwork. We talked to Dr. A's nurse about the VFend refill as well as the Pfizer RSVP program. She's to call me tomorrow with updates. As we were leaving, Dad remarked how nice it was to be literally outside instead of in the house. Poor thing. He's so busy caring for mom and too weak to venture far. Pop didn't remember any of our plans for the day -- he's taken to keeping a paper calendar in his pocket. As he got in the car with his large O2 tank, I noticed he had a flashlight in his hip pocket. My poor Pop. I wonder what he thought he needed that for.
Thank you, God, for giving me Lori. When either of us melts we can count on the other to lift us up. And she was doing lots of heavy lifting today. She talked to me the whole way back to work and then called me when I was back at my office to talk some more. I had to stay late to make up the work I'd missed. But another day is in the record books. And Kris won't have to hear any of this. Her burden begins when she returns "home" from work each day. I hope she has a better night than I did day.
Sunday, January 2, 2011
Air filters
My mom has been obsessed over the air filter in the heating unit in the garage. The unit is old (if being made in the in 70's make it old) and none of us girls could figure out how to open or change it. Mom is convinced that is what has caused dad to get sick. Today my darling Steve finally figured out the old Lennox system and replaced the filter. Yay! As soon as we told her, she started harping about changing it monthly. Baby steps. I know. Baby steps. I suggested she consider reducing use of chemicals in the house as well -- the lady never met a potpourri, candle, scented soap, etc., she didn't like! In fact, Steve can't stay in the place very long without having to go out for fresh air. But her mind will probably forget this part of the conversation. So that's ok.
Tomorrow Dad has a follow up with the cardiologist and then bloodwork at a separate clinic for his infectious disease doc. Mom has bellyached about how she isn't allowed to go with him so I made sure today to tell her that if her CNA will load her in the van at 1:15, she can go with us. Even though I will have to miss more work than I would like, it will appease her. I realize he is her husband and she wants to know what the doctor says but I have little patience for the silly questions she repeatedly asks or her poor social skills in public. But tomorrow I will be a good daughter. I won't have time to run her home between the 2 appointments and I can't miss half a day of work. So she'll ride with us to the lab, I'll drop dad off and park the van with it still running, to in and check dad in with his lab sheets, then go sit in the van with mom. As soon as he's done will pull up to the door, pick him up, take them home, I'll unload her and get her into the house and then go back to work.
Silly me. I have a broken crown that needs immediate attention. It cracked NY Eve. My dentist said he'll work me in but I can't splurge the time on Monday with everything I am doing for my parents. So maybe I can get him to see my during a lunch break on Tuesday.
Jill and her bf Adam have returned today from Southaven, MS. It looks as those he is completely moved to Fort Smith. Even his dog Gizmo (shitz-on: shitzu and bichon frise) is in town. I'm so glad she is home and has no travel plans for a while. She's her own person but also helps keep me centered when this world around me is spinning out of control. Derek and Gaby called from Peru. They are headed back from her family's beach house to Lima. They return to the U.S. on Tuesday.
That's another grounding I have. A son with a great fiance and who have plans for their future. Her sister Beatriz is coming back with them and will spend 1 weekend with us (next weekend) and 2 weeks in February. She's going to be my guide when I take the students to Peru in May. So this is a great bonding opportunity. It will also be fun for us girls to work on planning a wedding.
And speaking of weddings, the idea of using the bed & breakfast jsut a few hundred yards away from the beach house for our family is out of the questions. The rooms go for $200 US a night! But Gaby's dad Julio thinks that the neighbors with houses on either side of theirs will rent to us. That has me stoked. I'd love to rent both and have plenty of space for the 3 nights we'd be at the beach. In total, that should provide us with enough sleeping capacity for 20 people... and about 6 bathrooms and 2 kitchens and living areas, 2 casitas... and we'd all be together for NY Eve. We could walk to the the beach chapel for church at 7 pm, return for the traditional dinner at 10 and then dance and eat lucky grapes on the terrace at midnight. I imagine such a splendid time for us all.
Let me explain a little more about beach houses... they are what we'd call condos. They are 2 stories with the lower level having a dining room and living room that open onto a paved/stamped/stone terrace. Just down 8 steps or so is the beach. Nothing stands between the bedroom windows upstairs and the waves crashing on the shore. No road. No towering hotels. Nothing.
These are the happy thoughts that help me remember today's challenges are temporary. I pray a miracle would happen that would permit one or both my parents to be healthy enough to travel to Peru with us next December. But if they aren't here, I'll be much happier in a foreign country away from the routine we've had for years as I learn to embrace holidays without my parents. So from a pragmatic view, this is smart.
So back to the real world. Tomorrow is a workday and shuttling parents to doctors. I'm tired just thinking about it. I love my parents immensely and will do what I can to ease their suffering. And God, if you're reading this, please send more lucid and happy moments their way. They are good people who have always played by the rules, worked hard, and cared for others. Please give them a little joy these next few weeks.
Tomorrow Dad has a follow up with the cardiologist and then bloodwork at a separate clinic for his infectious disease doc. Mom has bellyached about how she isn't allowed to go with him so I made sure today to tell her that if her CNA will load her in the van at 1:15, she can go with us. Even though I will have to miss more work than I would like, it will appease her. I realize he is her husband and she wants to know what the doctor says but I have little patience for the silly questions she repeatedly asks or her poor social skills in public. But tomorrow I will be a good daughter. I won't have time to run her home between the 2 appointments and I can't miss half a day of work. So she'll ride with us to the lab, I'll drop dad off and park the van with it still running, to in and check dad in with his lab sheets, then go sit in the van with mom. As soon as he's done will pull up to the door, pick him up, take them home, I'll unload her and get her into the house and then go back to work.
Silly me. I have a broken crown that needs immediate attention. It cracked NY Eve. My dentist said he'll work me in but I can't splurge the time on Monday with everything I am doing for my parents. So maybe I can get him to see my during a lunch break on Tuesday.
Jill and her bf Adam have returned today from Southaven, MS. It looks as those he is completely moved to Fort Smith. Even his dog Gizmo (shitz-on: shitzu and bichon frise) is in town. I'm so glad she is home and has no travel plans for a while. She's her own person but also helps keep me centered when this world around me is spinning out of control. Derek and Gaby called from Peru. They are headed back from her family's beach house to Lima. They return to the U.S. on Tuesday.
That's another grounding I have. A son with a great fiance and who have plans for their future. Her sister Beatriz is coming back with them and will spend 1 weekend with us (next weekend) and 2 weeks in February. She's going to be my guide when I take the students to Peru in May. So this is a great bonding opportunity. It will also be fun for us girls to work on planning a wedding.
And speaking of weddings, the idea of using the bed & breakfast jsut a few hundred yards away from the beach house for our family is out of the questions. The rooms go for $200 US a night! But Gaby's dad Julio thinks that the neighbors with houses on either side of theirs will rent to us. That has me stoked. I'd love to rent both and have plenty of space for the 3 nights we'd be at the beach. In total, that should provide us with enough sleeping capacity for 20 people... and about 6 bathrooms and 2 kitchens and living areas, 2 casitas... and we'd all be together for NY Eve. We could walk to the the beach chapel for church at 7 pm, return for the traditional dinner at 10 and then dance and eat lucky grapes on the terrace at midnight. I imagine such a splendid time for us all.
Let me explain a little more about beach houses... they are what we'd call condos. They are 2 stories with the lower level having a dining room and living room that open onto a paved/stamped/stone terrace. Just down 8 steps or so is the beach. Nothing stands between the bedroom windows upstairs and the waves crashing on the shore. No road. No towering hotels. Nothing.
These are the happy thoughts that help me remember today's challenges are temporary. I pray a miracle would happen that would permit one or both my parents to be healthy enough to travel to Peru with us next December. But if they aren't here, I'll be much happier in a foreign country away from the routine we've had for years as I learn to embrace holidays without my parents. So from a pragmatic view, this is smart.
So back to the real world. Tomorrow is a workday and shuttling parents to doctors. I'm tired just thinking about it. I love my parents immensely and will do what I can to ease their suffering. And God, if you're reading this, please send more lucid and happy moments their way. They are good people who have always played by the rules, worked hard, and cared for others. Please give them a little joy these next few weeks.
Saturday, January 1, 2011
Happy 2011
The holiday season has finally ended. Tonight's final gathering was at the home of my mom's brother Randy. There was a good turn-out... somewhere near close to half of the brood. Lori had gotten mom ready today and she was wearing a new shirt I'd bought for her. All was relatively well until Mom brought up that she couldn't go to Dad's appointment with him. I think our aunts and uncles think my sisters and I are cruel and forbid to let her go but the truth is that we take off work to get the appointments handled and having to add an additional half hour or more to load/unload then reload/unload Mom is often just impossible for us to manage. Mom pouts and gets huffy when she doesn't get her way. She was always a bit like this but her stroke-damaged brain has caused it be far worse. In fact, some have said they think her mental capacity is deterioriating. For that matter, both parents are. The crazy part is they can be perfectly lucid one moment and vicious or bonkers the next.
My cousin Shelly said something that only my sisters and I have whispered to each other. We are in the process of mourning the loss of both of our parents. How true! And thank you God, for having that articulated by someone other than us. We feel guilty for thinking such. It is helpful though painful to hear someone else say it. My mom's siblings are struggling as well. They see the decline in cognition and are at a loss how to help. The depictions of us are no doubt distorted. We encouraged each to go visit and listen. We'll manage the doc appointments though taking mom every other week for a pro-time is something someone can help us with.
I feel numb tonight. I don't want the rest of the family to think we are horrible. Yet they aren't walking in our shoes. I love and adore the parents I used to have. But quite frequently I can't tolerate the hateful woman who now occupies my mother's body. She'd never be like this if it were her real mind. She'd never want to be so incapacitated that she can't feed herself with a fork or spoon. She'd never want to speak to someone across the table only to find out that person has already left. She can't see. Her body has betrayed her. Her bitterness is justified but the brunt of it goes to my dad. My Pop is a saint. Yes, he is sick and has dementia but how many other men do you know who would put ointment on the rectum of another person day in and day out and change the pads in her panties... or jump up to get cold water because the water in the glass is warm... or change the remote control because she can't operate the buttons.... or look for a coat that she insists is in the closet but no longer can be found. That's my Dad. That's his role. He complains some but only because he no sooner sits than another order is barked at him. Yet she can't see that he's sitting. Oh, what a mess it is.
My prediction for 2011 is that I won't have my parents -- even in their current state -- at the end of this year. And if I can survive this year with the pressure of parenting my parents, working full time, going to school, being a partner and not just a spouse, and remembering I'm a mother and doing motherly things... well then 2011 will be it for me as well. Now I'm not getting all freaked out here but my mom had a stroke at 57, my aunt died from a stroke at 45. Face it, females in the family who live his stress lifestyles don't have a good track record.
Then you'd think New Year's resolutions would be important. Yes, they are. I had exercised dutifully until my dad collapsed October 1. In those 3 months and 1 day, I no longer have time for myself like I did before. I've gained 17 pounds and don't exercise at all. I make bad food choices because I'm too tired to make good ones and haven't the time to plan ahead.
My respite is thinking of the 2 trips to Peru. Yes, they'll be lots of work but what a comforting diversion they offer. And my dear husband, Steve, is becoming more and more dear to me with each passing day. Maybe losing his own brother to suicide 3 years ago has helped him to know that none of us can truly understand the road another walks upon. He's a great guy, that Steve. He'll hand me my coat and keys and help me find my phone. He helps me keep it between the lines as I journey on this dark lonely highway.
My cousin Shelly said something that only my sisters and I have whispered to each other. We are in the process of mourning the loss of both of our parents. How true! And thank you God, for having that articulated by someone other than us. We feel guilty for thinking such. It is helpful though painful to hear someone else say it. My mom's siblings are struggling as well. They see the decline in cognition and are at a loss how to help. The depictions of us are no doubt distorted. We encouraged each to go visit and listen. We'll manage the doc appointments though taking mom every other week for a pro-time is something someone can help us with.
I feel numb tonight. I don't want the rest of the family to think we are horrible. Yet they aren't walking in our shoes. I love and adore the parents I used to have. But quite frequently I can't tolerate the hateful woman who now occupies my mother's body. She'd never be like this if it were her real mind. She'd never want to be so incapacitated that she can't feed herself with a fork or spoon. She'd never want to speak to someone across the table only to find out that person has already left. She can't see. Her body has betrayed her. Her bitterness is justified but the brunt of it goes to my dad. My Pop is a saint. Yes, he is sick and has dementia but how many other men do you know who would put ointment on the rectum of another person day in and day out and change the pads in her panties... or jump up to get cold water because the water in the glass is warm... or change the remote control because she can't operate the buttons.... or look for a coat that she insists is in the closet but no longer can be found. That's my Dad. That's his role. He complains some but only because he no sooner sits than another order is barked at him. Yet she can't see that he's sitting. Oh, what a mess it is.
My prediction for 2011 is that I won't have my parents -- even in their current state -- at the end of this year. And if I can survive this year with the pressure of parenting my parents, working full time, going to school, being a partner and not just a spouse, and remembering I'm a mother and doing motherly things... well then 2011 will be it for me as well. Now I'm not getting all freaked out here but my mom had a stroke at 57, my aunt died from a stroke at 45. Face it, females in the family who live his stress lifestyles don't have a good track record.
Then you'd think New Year's resolutions would be important. Yes, they are. I had exercised dutifully until my dad collapsed October 1. In those 3 months and 1 day, I no longer have time for myself like I did before. I've gained 17 pounds and don't exercise at all. I make bad food choices because I'm too tired to make good ones and haven't the time to plan ahead.
My respite is thinking of the 2 trips to Peru. Yes, they'll be lots of work but what a comforting diversion they offer. And my dear husband, Steve, is becoming more and more dear to me with each passing day. Maybe losing his own brother to suicide 3 years ago has helped him to know that none of us can truly understand the road another walks upon. He's a great guy, that Steve. He'll hand me my coat and keys and help me find my phone. He helps me keep it between the lines as I journey on this dark lonely highway.
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