That was the prime topic of conversation in town this morning as I made the rounds from the aerobics class at the YMCA to the post office and finally to the feed store to pick up sunflower seeds for the birds.
The forecast this morning for the weather this week is rather grim. Unlike other places in the north and east, where once winter sets in, it is pretty much there to stay, winter in this lower part of Missouri behaves in a rather manic-depressive sort of way. It was nearly 70 degrees on Saturday, we were running around in our shirt sleeves, sitting on the porch basking in the sun drinking coffee. Now the temperature is plunging and near-blizzard conditions are being forecast for some areas of the state, particularly north of the I-44 corridor that sort of divides the state in half. There is some strange atmospherics that go on in this state and often the weather north of I-44 is much worse than what happens down in this part of the state,
But then "much worse" is something of a relative term, isn't it? One wonders what is "much worse:" 2 feet of snow or 2 inches of solid ice? The ice, obviously.
At any rate, we may or may not get a bunch of snow, we may or may not get a lot of freezing rain and ice first -- which is purely horrible -- underneath a bunch of snow, but people this morning were sort of scurrying, realizing that if the bad stuff does hit, they are not prepared. I realized I was almost out of sunflower seed so I did a bit of scurrying myself.
Richard has been scurrying, charging up the laptop batteries, making sure we have water to flush the toilet in case an ice storm wipes out the power, putting concrete blocks in the back of truck to help with traction, making sure the generators have gas...
Just can't ever tell with the weather -- sometimes it happens exactly as it says and sometimes nothing happens at all. Just never know....
Monday, January 31, 2011
Saturday, January 29, 2011
Unintended humor... and it could be worse
One of the traits I admired most about our son was his compulsion to make sure he paid off his bills. Over the course of his sometimes-troubled life, he got himself in several major financial messes thanks to bad decisions about trying to help people who were taking advantage of him and the help of predatory lenders, but he managed to get all of those debts paid off before he got sick. Indeed, about a month before he was diagnosed with cancer, he made the last payment to the last predatory lender and was excited about the prospect of saving that money so he could move out on his own. Yes, he did have some help -- we were a safety net for him and let him live with us -- but he did not freeload. No need. Even though the “room and board” we charged him was a lot less than he would have paid on rent, food, and utilities had he been living on his own, he did pay us as well.
By the time he died, he owed nothing. He paid the cost of transporting his body to the research facility by selling his guns, and he paid off his credit card bill with January check he got from Social Security. But it now seems there may be some additional bills that neither he nor we were anticipating because of confusion with Medicaid, hospice, and the nursing home.
My mother often remarked that she thought she had an odd sense of humor, and I sometimes wonder if I have not also inherited a strange way of looking at the world. At any rate, gales of laughter rang out at our house this morning after I read the letter our son received yesterday from the Missouri Department of Social Services informing him, that “you are no longer eligible for…. the vendor nursing home program” due to the reason listed below, which is (cutting through government gobbledygook) “you are dead.”
And it goes on to inform him that, “if you disagree with this decision, you have the right to request a hearing…”
Obviously, of course, we would be the ones to fill out the form and request the hearing, but I had this sudden vision of our boy showing up at a hearing--as ghost--to protest the fact that they had cut him off on Jan 13, the day that he died.
The timing is sort of tricky. He was admitted to the nursing home on Dec 17, and he died on Jan 13, so he was a resident there a few days short of 1 month.
The nursing home arranged for an ultrasound examination that ended about 30 minutes before he died, and there is the possibility that the images from this were read by a radiologist later that day--after he died--or possibly the next day. So one wonders who is paying that bill? Medicaid?
Also, we may end up having to pay for part of his stay in the nursing home. We were told that hospice would bill Medicaid for the nursing home bill, and then pay the nursing home. And in December Nathaniel, had done the “pay down” for January that Medicaid required when his full Social Security benefit kicked in November. Yet another letter we received about a week ago indicates that because of a change in vendor status, he will owe about $1,000 for the time he stayed in the nursing home.
It is all very confusing, and we have decided to do nothing about any of this because we figure the parties involved (hospice, Medicaid, and the nursing home) will get it all sorted out. We think that perhaps he will actually owe about $500, which we will recoup when we sell his car. So, we are not stressing about this. It is sort of like standing back and watching a “Chinese fire drill,” a term my dad used to use, which was a gag I remembering seeing done in the silent movies, and “figuratively refers to a large, ineffective, and chaotic exercise—by a group of individuals that accomplishes nothing.”
And then on to less humorous matters…
Thursdays are going to be a minefield for us during lunchtime for a while, I think, and so we left the house at 10:45 on Thursday to eat out and shop at the discount grocery. Shortly after we got back, I received a phone call from a woman whose boys were friends with our son when they all attended a small one-room schoolhouse out in the country for about 4 years. She had three boys, and our son used to go to her house fairly regularly to play with her sons. She called to tell me that she had just found out that Nathaniel had died, and to express her condolences, and then she began sobbing as she told me that her middle son, who was about Nathaniel’s age, had killed himself within the last few days.
In the midst of one of my “pity parties,” I had thought that it couldn’t get much worse than losing a child (unless it might be that several of one’s children died at once), but then I realized, that yes, it certainly could get worse…
By the time he died, he owed nothing. He paid the cost of transporting his body to the research facility by selling his guns, and he paid off his credit card bill with January check he got from Social Security. But it now seems there may be some additional bills that neither he nor we were anticipating because of confusion with Medicaid, hospice, and the nursing home.
My mother often remarked that she thought she had an odd sense of humor, and I sometimes wonder if I have not also inherited a strange way of looking at the world. At any rate, gales of laughter rang out at our house this morning after I read the letter our son received yesterday from the Missouri Department of Social Services informing him, that “you are no longer eligible for…. the vendor nursing home program” due to the reason listed below, which is (cutting through government gobbledygook) “you are dead.”
And it goes on to inform him that, “if you disagree with this decision, you have the right to request a hearing…”
Obviously, of course, we would be the ones to fill out the form and request the hearing, but I had this sudden vision of our boy showing up at a hearing--as ghost--to protest the fact that they had cut him off on Jan 13, the day that he died.
The timing is sort of tricky. He was admitted to the nursing home on Dec 17, and he died on Jan 13, so he was a resident there a few days short of 1 month.
The nursing home arranged for an ultrasound examination that ended about 30 minutes before he died, and there is the possibility that the images from this were read by a radiologist later that day--after he died--or possibly the next day. So one wonders who is paying that bill? Medicaid?
Also, we may end up having to pay for part of his stay in the nursing home. We were told that hospice would bill Medicaid for the nursing home bill, and then pay the nursing home. And in December Nathaniel, had done the “pay down” for January that Medicaid required when his full Social Security benefit kicked in November. Yet another letter we received about a week ago indicates that because of a change in vendor status, he will owe about $1,000 for the time he stayed in the nursing home.
It is all very confusing, and we have decided to do nothing about any of this because we figure the parties involved (hospice, Medicaid, and the nursing home) will get it all sorted out. We think that perhaps he will actually owe about $500, which we will recoup when we sell his car. So, we are not stressing about this. It is sort of like standing back and watching a “Chinese fire drill,” a term my dad used to use, which was a gag I remembering seeing done in the silent movies, and “figuratively refers to a large, ineffective, and chaotic exercise—by a group of individuals that accomplishes nothing.”
And then on to less humorous matters…
Thursdays are going to be a minefield for us during lunchtime for a while, I think, and so we left the house at 10:45 on Thursday to eat out and shop at the discount grocery. Shortly after we got back, I received a phone call from a woman whose boys were friends with our son when they all attended a small one-room schoolhouse out in the country for about 4 years. She had three boys, and our son used to go to her house fairly regularly to play with her sons. She called to tell me that she had just found out that Nathaniel had died, and to express her condolences, and then she began sobbing as she told me that her middle son, who was about Nathaniel’s age, had killed himself within the last few days.
In the midst of one of my “pity parties,” I had thought that it couldn’t get much worse than losing a child (unless it might be that several of one’s children died at once), but then I realized, that yes, it certainly could get worse…
Saturday, January 22, 2011
We do something entirely unexpected
Yesterday afternoon we left for Town (and as I have explained in the past, Town is about 25 miles down the road) to run errands:
The day before, on Thursday, I had spoken to my friend Judy about whether she was going to attempt aerobics class yesterday morning because of the snowfall. They live about 5 miles out of town on a hilly, windy, gravel road and often get snowed in by not very much snow. She and Charlie are leaving early next week for a 2-week vacation at a resort in Mexico. For the past two weeks or so she has been my go-to woman for hugs and shoulder crying, so I am going to miss her. I told her if they were able to get out to see Charlie’s mom, who lives in the assisted-living wing of the nursing home, which is about 1 mile from our house, they should call and come by the house for a visit.
We normally eat dinner at 4 p.m. on the dot – I know that is very early for some people, but we both work at home so we can eat dinner whenever we want and that is when we want to eat. We got back at 3:45 and there was a message from Judy that they were at Charlie’s moms and we should call them there. I dialed the number and heard my stomach gurgling because it was expecting to be fed shortly – indeed, Richard was setting out the plates – and after a bit of conversation with Judy, I heard myself say, “Why don’t you and Charlie come over for dinner?”
So they did.
You have to understand I can probably count on one hand the number of times we have invited people for dinner at our house in the last 30 years. We are not antisocial people, but our house is not conducive for entertaining, I am very nervous about cooking for other people– I have no confidence at all in my skill as a cook–and entertaining in that way is just is something we have avoided doing.
Last night was “left over night.” Richard had only eaten half his dinner from Thursday night because Thursday was a very hard day for us and we didn’t have much of an appetite – his problem was compounded because earlier in the afternoon he spilled a bag of cherry-flavored licorice all over the floor, washed it off, and then felt compelled to eat it all because it was wet.
Richard refuses to even taste the tongue I cooked a few weeks ago, so I was going to eat a tongue sandwich made on the last onion roll in the package. Richard grabbed a bag of frozen pork loin, we threw some Yukon gold potatoes into the microwave, he hauled out several containers of various vegetables, put together a salad, and within about 15 minutes we had a rather tasty meal for our friends without any fretting or attacks of nerves or a anything else. It happened too fast for any of that.
We sat around the table trading funny stories – especially Judy’s funny story of chasing after her miniature dachshund, who was chasing a chicken, and they all ended up in the lake. Charlie, who was a chemist by profession, enlightened us on how certain proteins, which are composed of long building blocks of…. uhhh…stuff…fold in on themselves. Well, we laughed and enjoyed each other’s company and then they went home.
I am still reeling from the spontaneity of the situation yesterday. We just don’t do “spontaneity” very well, but I think we are going to try to make a habit of it.
- We had to pick up a generator that we had dropped off at a small engine repair place because it wasn’t working right. Turns out that “cheap off-brand” generators such as this one, which we bought from Big Name Tool Place That Shall Not Be Named cannot really be repaired because there are no parts available – not even a spark plug – says the repairman.
- Then we had to stop by the funeral home to pick up our son’s death certificate and talk with them about options for printing the handout for the memorial service, if we decided to have a hand out.
- Then we had to stop by the newspaper office to pick up copies of the newspaper that has his obituary in it.
- Then we had to stop by Sears to buy a high-efficiency front-loading washing machine that was on sale, which is supposed to save us money on our electric bill and do a better job of washing our clothes. Every time in the past we have bought an energy-efficient replacement for an older model our electricity bill has increased. We will not abate our breath to see what happens when we start using the new machine.
- Then we had to stop by Aldi to stock up on butter, bacon, and eggs, which as you all know, are the building blocks of a good, heart-healthy diet.
- And then we arrived home at about 3:45.
The day before, on Thursday, I had spoken to my friend Judy about whether she was going to attempt aerobics class yesterday morning because of the snowfall. They live about 5 miles out of town on a hilly, windy, gravel road and often get snowed in by not very much snow. She and Charlie are leaving early next week for a 2-week vacation at a resort in Mexico. For the past two weeks or so she has been my go-to woman for hugs and shoulder crying, so I am going to miss her. I told her if they were able to get out to see Charlie’s mom, who lives in the assisted-living wing of the nursing home, which is about 1 mile from our house, they should call and come by the house for a visit.
We normally eat dinner at 4 p.m. on the dot – I know that is very early for some people, but we both work at home so we can eat dinner whenever we want and that is when we want to eat. We got back at 3:45 and there was a message from Judy that they were at Charlie’s moms and we should call them there. I dialed the number and heard my stomach gurgling because it was expecting to be fed shortly – indeed, Richard was setting out the plates – and after a bit of conversation with Judy, I heard myself say, “Why don’t you and Charlie come over for dinner?”
So they did.
You have to understand I can probably count on one hand the number of times we have invited people for dinner at our house in the last 30 years. We are not antisocial people, but our house is not conducive for entertaining, I am very nervous about cooking for other people– I have no confidence at all in my skill as a cook–and entertaining in that way is just is something we have avoided doing.
Last night was “left over night.” Richard had only eaten half his dinner from Thursday night because Thursday was a very hard day for us and we didn’t have much of an appetite – his problem was compounded because earlier in the afternoon he spilled a bag of cherry-flavored licorice all over the floor, washed it off, and then felt compelled to eat it all because it was wet.
Richard refuses to even taste the tongue I cooked a few weeks ago, so I was going to eat a tongue sandwich made on the last onion roll in the package. Richard grabbed a bag of frozen pork loin, we threw some Yukon gold potatoes into the microwave, he hauled out several containers of various vegetables, put together a salad, and within about 15 minutes we had a rather tasty meal for our friends without any fretting or attacks of nerves or a anything else. It happened too fast for any of that.
We sat around the table trading funny stories – especially Judy’s funny story of chasing after her miniature dachshund, who was chasing a chicken, and they all ended up in the lake. Charlie, who was a chemist by profession, enlightened us on how certain proteins, which are composed of long building blocks of…. uhhh…stuff…fold in on themselves. Well, we laughed and enjoyed each other’s company and then they went home.
I am still reeling from the spontaneity of the situation yesterday. We just don’t do “spontaneity” very well, but I think we are going to try to make a habit of it.
Tuesday, January 18, 2011
In the presence of Greatness
Jackie and Todd were especially good to us over the holiday season. Jackie was the paramedic who Nathaniel worked with when he was training to be an EMT. Todd is the genius who fixes our computers. They have morphed into more than just business associates – they have become friends.
We spent time with them on Thanksgiving while Nathaniel went to a friend’s house. At Christmas, while he was in the nursing home, and we hadn’t even thought about Christmas dinner, they had us over for a lovely meal.
Jackie raises Great Pyrenees. Definitely not one of those infamous puppy mills. They live on a small farm, and their dogs live in a large fenced area with goats and chickens and shelter in bad weather with the goats in the pole barn. When they came by the day our son died, they brought this one with them.
His name is Beren, and for quite some time now, he has been traveling the dog show circuit with his handler.
He is a good dog. How good is he? So good that he will compete in the upcoming Wesminster Kennel Club dog show.
In the meantime, he is home for a visit, slumming with the other dogs in Jackie’s kennel and living with the goats she has to help remind them that their main job on earth is not to parade around a ring in front of a judge but to guard animals.
I have heard stories about dogs--and sometimes cats as well--having almost a “6th sense” when it comes to awareness of emotional suffering in the people they are with.
I was sitting on the floor trying to get an eye-level picture of this beautiful dog. Todd was on the couch next to me and took the camera and took the picture.
Then Beren looked at me sitting there, and within a few seconds of this picture, had walked over to me, laid his massive forehead on my shoulder, and just stood there.
I did what any normal human would do. I buried my nose against his neck (he smelled very much like dog and goat), and wrapped my arms around him and stroked his fur. I just sort of leaned into him and felt this amazing release of tension and a sense of peace. And he just stood there and stood there while the conversation around us ebbed and flowed, and Todd picked up my old guitar and began making it do amazing things, and finally Beren raised his head and backed up and wandered into the kitchen to see if there was anything edible on the counter.
We have noticed in the last few days that the cat is acting odd too. She wanders around the house meowing loudly. We called her Squeaker to begin with because she has such tiny, whimpy meow. She has always allowed us to scratch her head, but she does not like to be petted and is the sort of cat that when you reach to pet her, she slinks down to avoid being touched. Suddenly, she has become very demanding about getting her head scratched and allowing us to pet her too. I think she knows.
We spent time with them on Thanksgiving while Nathaniel went to a friend’s house. At Christmas, while he was in the nursing home, and we hadn’t even thought about Christmas dinner, they had us over for a lovely meal.
Jackie raises Great Pyrenees. Definitely not one of those infamous puppy mills. They live on a small farm, and their dogs live in a large fenced area with goats and chickens and shelter in bad weather with the goats in the pole barn. When they came by the day our son died, they brought this one with them.
His name is Beren, and for quite some time now, he has been traveling the dog show circuit with his handler.
He is a good dog. How good is he? So good that he will compete in the upcoming Wesminster Kennel Club dog show.
In the meantime, he is home for a visit, slumming with the other dogs in Jackie’s kennel and living with the goats she has to help remind them that their main job on earth is not to parade around a ring in front of a judge but to guard animals.
I have heard stories about dogs--and sometimes cats as well--having almost a “6th sense” when it comes to awareness of emotional suffering in the people they are with.
I was sitting on the floor trying to get an eye-level picture of this beautiful dog. Todd was on the couch next to me and took the camera and took the picture.
Then Beren looked at me sitting there, and within a few seconds of this picture, had walked over to me, laid his massive forehead on my shoulder, and just stood there.
I did what any normal human would do. I buried my nose against his neck (he smelled very much like dog and goat), and wrapped my arms around him and stroked his fur. I just sort of leaned into him and felt this amazing release of tension and a sense of peace. And he just stood there and stood there while the conversation around us ebbed and flowed, and Todd picked up my old guitar and began making it do amazing things, and finally Beren raised his head and backed up and wandered into the kitchen to see if there was anything edible on the counter.
We have noticed in the last few days that the cat is acting odd too. She wanders around the house meowing loudly. We called her Squeaker to begin with because she has such tiny, whimpy meow. She has always allowed us to scratch her head, but she does not like to be petted and is the sort of cat that when you reach to pet her, she slinks down to avoid being touched. Suddenly, she has become very demanding about getting her head scratched and allowing us to pet her too. I think she knows.
Monday, January 17, 2011
Remembering MLK
Today is the day we set aside to remember Martin Luther King, Jr. One needs to keep in mind that this great man was still just a man, he had feet of clay, and he was not perfect.
But he did have a dream, a vision about how things could be different in this country, and he did something about it. But he was not just a social activist, and despite occasional slips along the way, he loved God and had a personal relationship with Him, and he encouraged others to do the same. It was not just about social change and righting wrongs.
I have a little volume, The Words of Martin Luther King, Jr.: Selected by Coretta Scott King, and every year on this day I get it out and thumb through it to remind myself that here was a man who was willing to put his life on the line for what he believed.
The quote continues with MLK reminding us to
At the moment, of course, we are living through the process of grieving for the death of our son last Thursday, so we still feel very much surrounded by ashes, the sun doesn’t seem to be shining, and we do indeed seem to be going through the routine of daily life as though in a drama with “decisive scenes missing.” But there is also deep within my heart the knowledge that Christ has come to give us life, and give us live abundantly, and that as soon as this season of weeping ends, we will once again experience a daybreak of joy. Right now the presence of Christ within is weeping with us -- He was indeed a man of sorrows and acquainted with grief -- but soon it will become “joy unspeakable and full of glory."
And once again I am overwhelmed by the kind remarks and thoughts and prayers offered by those who have read this blog and have chosen to leave a remark, and also for those who are holding us up but have chosen not to leave a remark. Bless you all.
But he did have a dream, a vision about how things could be different in this country, and he did something about it. But he was not just a social activist, and despite occasional slips along the way, he loved God and had a personal relationship with Him, and he encouraged others to do the same. It was not just about social change and righting wrongs.
I have a little volume, The Words of Martin Luther King, Jr.: Selected by Coretta Scott King, and every year on this day I get it out and thumb through it to remind myself that here was a man who was willing to put his life on the line for what he believed.
So I say to you, seek God and discover Him and make Him a power in your life. Without Him all of our efforts turn to ashes and our sunrises into darkest nights, Without Him, life is a meaningless drama with the decisive scenes missing. But with Him we are able to rise from the fatigue of despair to the buoyancy of hope. With Him we are able to rise from the midnight of desperation to the daybreak of joy. St Augustine was right – we were made for God and we will be restless until we find rest in Him….
The quote continues with MLK reminding us to
...never forget that there is a first and even greater commandment. “Love the Lord thy God with all the heart and all they soul and all thy mind.” This is the height of life, and when you do this, you live the complete life.
At the moment, of course, we are living through the process of grieving for the death of our son last Thursday, so we still feel very much surrounded by ashes, the sun doesn’t seem to be shining, and we do indeed seem to be going through the routine of daily life as though in a drama with “decisive scenes missing.” But there is also deep within my heart the knowledge that Christ has come to give us life, and give us live abundantly, and that as soon as this season of weeping ends, we will once again experience a daybreak of joy. Right now the presence of Christ within is weeping with us -- He was indeed a man of sorrows and acquainted with grief -- but soon it will become “joy unspeakable and full of glory."
And once again I am overwhelmed by the kind remarks and thoughts and prayers offered by those who have read this blog and have chosen to leave a remark, and also for those who are holding us up but have chosen not to leave a remark. Bless you all.
Friday, January 14, 2011
Fly away in the morning
Some bright morning when this life is over,
I’ll fly away
To a land where joy will never end
I’ll fly away
I’ll fly away oh glory,
I’ll fly away, in the morning…
When I die, hallelujah by and by,
I’ll fly away…
Our boy left his body behind yesterday morning and his soul flew away to heaven.
We left him at about 11:00 am, after the ultrasound technician finished her examination, alert and playing on the laptop computer. We were called about 45 minutes later that he had taken a turn for the worse and we needed to come back. I arrived at the nursing home within 5 minutes of getting the call, and he had just died.
We had bad news from the ultrasound examination. The preliminary result showed there was no free fluid in his abdomen. There was nothing the doctors could do to reduce the size of his belly and make him more comfortable. Had he lived longer he would likely have had a very miserable death.
So, the Lord was merciful. We began our walk through the valley of the shadow of death in June, and it has come to an end. And now we will go on with our lives without him.
“The Lord gave, and the Lord has taken away
Blessed be the name of the Lord”
Farewell my boy....
Thursday, January 13, 2011
Failure to communicate
Our frustration and anger at the local doctors who are supposed to be supervising our son’s care at the local nursing home (except I am not sure exactly who is in charge -- hospice or the doctors?) has been increasing daily during the past week, complicated by the fact that our son is somewhat friggled in the head, as my father would say.
Being his parent has always been a very challenging and frustrating experience for us (that was a topic of many of the early posts on this blog) because he is just “different” – not mentally retarded, not mentally ill, but probably a very high-functioning person with Asperger syndrome. The fact that he is dying has not changed him in that respect. He is still a challenge and he is still frustrating.
Early on when he was discharged to hospice, with one of the doctors at the local medical clinic as the admitting physician to the nursing home, hospice arranged for us to sign a power of attorney that allows us to make medical decisions for him only in the event he becomes mentally incapacitated to make decisions for himself.
But he is not yet mentally incapacitated. He is still mentally competent and independent and capable of making decisions, and unless we are also present in the room when any of the medical people taking care of him are there, none of these people are under any obligation to inform us of what has been said or what decisions have been made – indeed, they were prohibited by the HIPPA rules from disclosing anything at all.
So. Last Thursday, because of the alarming size his belly has grown too, the nurse practitioner from the clinic and the hospice nurse agreed that the doctor should do a belly tap and drain fluid out of his abdominal cavity. We happened to be in the room when this discussion took place. We were left with the impression that once the equipment needed for this was collected, the doctor would come in on Monday morning and drain the fluid. Over the weekend, the hospice nurse collected all of the equipment needed for this procedure and brought it to the nursing home. We assumed everything was good to go.
On Friday, one of the doctors at the clinic who comes to the nursing home to see patients – but not the primary care doctor of record – came into our son’s room and said “Hold on a minute… we can’t just go sticking needles in your belly without first finding out what is going on in there… we think your colon might be distended, we are not sure where your intestines are and how big the tumors are, and we need to get an ultrasound so we don’t kill you….”
Which is a prudent thing to do. The only problem is that we were not in the room when this conversation took place and during the many conversations we had with our son on Friday and Saturday and Sunday, he never bothered to mention this conversation to us. Later on when Richard confronted him about it, he said, “I didn’t think it was relevant.”
He didn’t think it was relevant.
So, we waited on Monday for a telephone call from our son telling us that the doctor was there to do the procedure. And it never came…
We were very upset and Richard had a long discussion with the nursing staff at the nursing home and had them add our names to the HIPPA form, and had our son sign the form, so that we could be informed directly of medical decisions.
And then things got really wanky. We assumed he would be transported to the nearest hospital or to the imaging clinic for the ultrasound, but only later did we find out that the nursing home has a contract with a company that comes with a portable ultrasound unit.
Nobody arranged for the ultrasound.
The nurse practitioner who coordinates patient care at the nursing home for the clinic had jury duty on Monday and Tuesday so he was not even there to get the ball rolling -- and the clinic has no back up nurse practitioner to see patients -- and, so nothing was done. Finally, yesterday, arrangements were made for the ultrasound to be done this morning at the nursing home.
A week has gone by. Our son’s belly swells by several more centimeters each day. He is now back on oxygen because the pressure from this fluid build up against his diaphragm is making it hard for him to breathe and his oxygen saturation levels are dropping. Any sudden movement at all puts so much pressure on his stomach that he vomits – not because of nausea but because whatever is in there is forced out.
Hospice is doing a wonderful job. There have been a few hiccups at the nursing home but it too has done a wonderful job at caring for our boy. The doctors: not so much.
So, here we are…. wondering how long of a delay there will be before the radiologist evaluates the ultrasound images and reports back to the doctor…. and then how long it will take the doctor to show up to do the tap… and… trying to take a deep breath and calm down and move through the day with some semblance of calmness.
On another note, I feel so blessed to have had the wonderful comments from people who have read the blog and have added us to their prayers and have sent such kind and caring remarks. I appreciate you all so much.
Being his parent has always been a very challenging and frustrating experience for us (that was a topic of many of the early posts on this blog) because he is just “different” – not mentally retarded, not mentally ill, but probably a very high-functioning person with Asperger syndrome. The fact that he is dying has not changed him in that respect. He is still a challenge and he is still frustrating.
Early on when he was discharged to hospice, with one of the doctors at the local medical clinic as the admitting physician to the nursing home, hospice arranged for us to sign a power of attorney that allows us to make medical decisions for him only in the event he becomes mentally incapacitated to make decisions for himself.
But he is not yet mentally incapacitated. He is still mentally competent and independent and capable of making decisions, and unless we are also present in the room when any of the medical people taking care of him are there, none of these people are under any obligation to inform us of what has been said or what decisions have been made – indeed, they were prohibited by the HIPPA rules from disclosing anything at all.
So. Last Thursday, because of the alarming size his belly has grown too, the nurse practitioner from the clinic and the hospice nurse agreed that the doctor should do a belly tap and drain fluid out of his abdominal cavity. We happened to be in the room when this discussion took place. We were left with the impression that once the equipment needed for this was collected, the doctor would come in on Monday morning and drain the fluid. Over the weekend, the hospice nurse collected all of the equipment needed for this procedure and brought it to the nursing home. We assumed everything was good to go.
On Friday, one of the doctors at the clinic who comes to the nursing home to see patients – but not the primary care doctor of record – came into our son’s room and said “Hold on a minute… we can’t just go sticking needles in your belly without first finding out what is going on in there… we think your colon might be distended, we are not sure where your intestines are and how big the tumors are, and we need to get an ultrasound so we don’t kill you….”
Which is a prudent thing to do. The only problem is that we were not in the room when this conversation took place and during the many conversations we had with our son on Friday and Saturday and Sunday, he never bothered to mention this conversation to us. Later on when Richard confronted him about it, he said, “I didn’t think it was relevant.”
He didn’t think it was relevant.
So, we waited on Monday for a telephone call from our son telling us that the doctor was there to do the procedure. And it never came…
We were very upset and Richard had a long discussion with the nursing staff at the nursing home and had them add our names to the HIPPA form, and had our son sign the form, so that we could be informed directly of medical decisions.
And then things got really wanky. We assumed he would be transported to the nearest hospital or to the imaging clinic for the ultrasound, but only later did we find out that the nursing home has a contract with a company that comes with a portable ultrasound unit.
Nobody arranged for the ultrasound.
The nurse practitioner who coordinates patient care at the nursing home for the clinic had jury duty on Monday and Tuesday so he was not even there to get the ball rolling -- and the clinic has no back up nurse practitioner to see patients -- and, so nothing was done. Finally, yesterday, arrangements were made for the ultrasound to be done this morning at the nursing home.
A week has gone by. Our son’s belly swells by several more centimeters each day. He is now back on oxygen because the pressure from this fluid build up against his diaphragm is making it hard for him to breathe and his oxygen saturation levels are dropping. Any sudden movement at all puts so much pressure on his stomach that he vomits – not because of nausea but because whatever is in there is forced out.
Hospice is doing a wonderful job. There have been a few hiccups at the nursing home but it too has done a wonderful job at caring for our boy. The doctors: not so much.
So, here we are…. wondering how long of a delay there will be before the radiologist evaluates the ultrasound images and reports back to the doctor…. and then how long it will take the doctor to show up to do the tap… and… trying to take a deep breath and calm down and move through the day with some semblance of calmness.
On another note, I feel so blessed to have had the wonderful comments from people who have read the blog and have added us to their prayers and have sent such kind and caring remarks. I appreciate you all so much.
Friday, January 07, 2011
What’s the Evil Squeaker-do doing?
That is usually among the first of the questions our son asks me as I walk into his room for our morning visit.
What she is usually doing is annoying the heck out of us – either wanting out because she is tired of being cooped up in the house – or wanting in after she is outside for a few minutes and realizes it is simply just too cold for those precious little kitty paws.
But then she does what all cats seem to have knack for doing – melting your heart when you would like to strangle them. Under the sewing machine is a large basket full of balls of yarn and she has found one, hooked it out with her needle claws, and is demonstrating to an appreciative audience...
all of her skills as the great kitty hunter.
She will kill it dead, no doubt about it.
It escapes several times, and she chases it down.
After having sufficiently subdued it,
she wanders off to take a nap, leaving me to pick up the aftermath.
He misses his kitty, and we have loaded her up in the cat carrier and taken her to the nursing home several times. He gets to pet her a little and scratch her head, which she loves, but she is too frightened to do much more than cower at the back of the carrier or hide under the bed.
What she is usually doing is annoying the heck out of us – either wanting out because she is tired of being cooped up in the house – or wanting in after she is outside for a few minutes and realizes it is simply just too cold for those precious little kitty paws.
But then she does what all cats seem to have knack for doing – melting your heart when you would like to strangle them. Under the sewing machine is a large basket full of balls of yarn and she has found one, hooked it out with her needle claws, and is demonstrating to an appreciative audience...
all of her skills as the great kitty hunter.
She will kill it dead, no doubt about it.
It escapes several times, and she chases it down.
After having sufficiently subdued it,
she wanders off to take a nap, leaving me to pick up the aftermath.
He misses his kitty, and we have loaded her up in the cat carrier and taken her to the nursing home several times. He gets to pet her a little and scratch her head, which she loves, but she is too frightened to do much more than cower at the back of the carrier or hide under the bed.
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