Reached a breaking point
On October 28, 2018 I had reached a breaking point that even a week later I still can't figure out how to get past. It is that hopelessness that is inherent when caring for someone who, while they aren't perpetually negative, they for sure aren't an optimist...
Let me introduce the main characters of this very real story. I am a 37 year old husband of an extremely wonderful, beautiful (even if she doesn't see it), and intelligent wife, herself of 37 years. She is going to school to retake some prerequisites that she needs to be able to get into PA school. She has always dreamed of being a doctor. When we started our family (very early and unexpectedly), she had given that up for the time, and now sees being a PA as a great way to get back into what she loves doing best. Our boys are old enough that she has the time to be able to go to school, and my job allows me to work from home, so the time is ripe for her to pursue her ambition.
It has been a year now since my wife has felt "whole". This is not your typical 'caregiver/family member-in-need story'. It isn't a mother who had a stroke and now is difficult to understand what she says, feels, or needs. It isn't an aging person, reaching death's door. It isn't a quadriplegic who has need of assistance for even the most basic functions. No, no, it isn't that severe, so what do I have to complain about? Well, please, please hear me out... Fine, if you don't want to, then feel free to leave. This blog isn't private, but it is also not required reading, at least not from the author's perspective.
A year. I wonder if that is what has made her more frustrated lately. I suppose that could be why she talks like everything is so hopeless right now. But because of all of her self-pity, the one person whom I should always be able to rely on, who even on her bad days is still my better half, isn't meeting my emotional needs.
Okay, let me go back a bit. On second thought, maybe to get a better perspective, I need to go back a LOT. My wife (we will call her S for convenience) has been through the wringer. Nine years ago, while she was pregnant with our second son, S had such severe Hyperemesis Gravidarum, that she couldn't keep anything down, even sips of water or her favorite calming beverage: Mountain Dew. Because of this, the doctors decided she needed a permanent IV line, so she could do IVs at home. This didn't last long, as she started having pain near where the IV line output was, deep inside her veins, right near her heart. The MDs feared the PICC line was too close to her heart valves causing the discomfort, and did an ultrasound to verify its placement.
This ultrasound shook our world. It was a 7 on the Richter scale size shake: she had a tumor near her Thyroid gland. The biopsy the next week revealed it to be Thyroid Cancer. She was pregnant, and the doctors decided to leave it in until she delivered. The PICC line was removed because regardless of the positioning, it just still hurt. Then she had to go get IV fluids 2x a week until she delivered. Oh, and she had Hip Dysplasia while she was pregnant too, which in itself is common enough, but just remember that for later.
After S delivered a beautiful but colicky boy, who wouldn't fall asleep unless I drove him around listening to 80s music, she had that first surgery of what would be a string of surgeries for the next 8 years. They removed the tumor and her thyroid, because it was abnormal as well. Then she had to be kept hypothyroidic and on a very strict low iodine diet (you have no idea how frustratingly difficult that is) to starve the remaining cancer cells, so that they would jump at the radioactive iodine that she was later treated with. It was a simple pill, inside a small metal canister, inside of a larger metal ammo can-sized box, which she couldn't open until the tech was on the completely other side of the room.
When you are radioactive, you have to be isolated for 7-10 days, depending on how strong the radiation is. S got bored, but made it through. This had to occur again 6 months later, but after that, she has not had a reemergence of Thyroid Cancer since.
The next summer, S had some sudden attacks of pain that were making it hard to breathe, and two or three separate times at the ER were wasted by MDs just deciding it was pleurisy, and even one time an ER MD said that it was just a panic attack! Then at another ER visit that a friend drove her to, the friend asked the MD if it could have been Gall Stones, and sure enough, the MD listened to S's friend, and ran the tests, and sure enough, Gall Stones. The Gall Bladder surgery took longer to recover, because she had some additional Gall Stones stuck in the Common Bile Duct, which were quite unpleasant to remove.
Only a year or two later, S had Appendicitis and had her Appendix removed. This time, it fortunately was identified early and taken care of quickly. Still, S doesn't recover from injury or surgery following the average patient time span, and the long recovery time ensued.
Then some time later, to help her with weight control, S had Gastric Bypass surgery, which came with its own complications: two Strictures, which is scar tissue that prevents almost anything from exiting the tiny pouch that was now her stomach. Eventually she recovered, but now she can't take NSAIDs, because Gastric Bypass heavily increases the likelihood of Ulcers from NSAIDs.
Fast-forward only 2 more years to mid-2017. S's periods were so horrible that the Ablation that her OB/GYN initially performed to provide S relief had little lasting effect, so a Hysterectomy was in order. This was just as horrible to recover from as the Gastric Bypass surgery, and for an inexplicable cause, while she was still recovering from that, her hip started hurting severely.
This is where everything stopped being straightforward. This is when she essentially never fully recovered. Up to this point, each medical need was mostly clear as to what was the problem. But now, things started being less sure. S went to several doctors to figure out what was wrong with her hip, and they started with treatment for Bursitis, which had little effect, and then they treated her for a neurological problem in her hip, which also only made a little improvement. This is why I had you remember the Hip Dysplasia back when she was pregnant. Hip problems on that one hip now began to be omnipresent.
About six months after the hip pain started, they finally ordered an MRI, where they discovered that S's Labrum was 75% torn, and it needed to be surgically repaired. They didn't get to this surgery until March 2018, and if you have ever had hip surgery, even orthoscopic, it takes quite some time to recover. She was stuck in the bed for quite some time.
When S finally started experiencing some improvement on how much weight she could put on the hip and it was starting to feel a bit better, she passed out in her Anatomy Lab. She was only out for a second or two, but that was long enough to fall off the tall stool she was sitting on and land heavily on her recovering hip... Fractured. She stayed off of it for a few weeks, and it seemed to be improving (again), but the number of times she would pass out started increasing, up until the point that she would be laying in bed and still passed out. The day that I drove her to work (as a Medical Assistant at a primary care physician's office) and she passed out just as getting through the door, we realized this was serious and she needed to have this sorted out.
She was first referred to a Cardiologist, where they orded an Echo Cardiogram and a 48-hour Holter monitor, and declared it to be Postural Orthostatic Tachycardia Syndrome, or POTS. We were frustrated because it sounded like he was just throwing her in some 'can't tell what's wrong with you' bucket. Just like when she was diagnosed with IBS several years before. We wanted more information.
We started by looking online, and talking to S's primary care physician, which actually both gave us lots of hope, and a bit of an idea what this entails and what to do next. So we made an appointment with a neurologist, where we hoped to get more specifics and further her treatment plan.
At the neurology appointment, while I was checking her in, she went to the ground and began writhing and crying from excruciating pain in her abdomen. The Drs. came up from the back to check on her, and they had the front desk assistants call 911. This office was directly across from the ER, so we got her over there, and pain medicine helped, but the real cause couldn't be identified, so they prescribed her medicine that stops intestinal spasms per our suggestion that it might be related to POTS, which gradually helped her out.
We finally got her to see the neurologist, who ordered a tilt-table test and EEG. This all confirmed that she had POTS, and not a worse neurological issue that first presents the same.
And once again, things seemed to begin improving. She got back to working part time. She could sense when she was about to pass out so she could get on the ground, but even those occurrences began waning. We were finally winning the battle! But then a new problem began to arise. S started having stomach discomfort again, but while it wasn't acute pain this time, it was accompanied by significant nausea, which caused food to start coming up frequently. Her GI ordered an endoscopy and revealed an ulcer, which takes time to heal.
This whole time, her hip was still sore, but not getting any worse, until she passed out again, and landed on it... again.
By now you would think that everything I have mentioned above is the real reason this caregiver had reached a breaking point: that I had had enough of medical problems and doctor appointments, and needing to make sure she doesn't overdo it on the days she is feeling mildly better. There is where you would be wrong. I can handle helping her with even the most basic of needs. I am always happy to drive her places when she needs it. I am happy to bring her things from the kitchen that might even be only a dozen steps from where S is sitting, because that means that I can keep her from doing something that will be uncomfortable for her.
What I can't handle very well, is not being able to help her see the positive side of things. I can't just sit idly by and see her be unhappy and feel completely helpless at comforting her. Next comes my breaking point.
By now, you can see that S has gone through a lot, and that she has seen her share of pain med needs. However, since the problems aren't all in one specific area of specialty, she has had pain meds prescribed by several different doctors. Remember how I told you she shouldn't have NSAIDs because of her Gastric Bypass? Because of that, when she is in significant pain, there isn't an over the counter option she can take to help with it. The only help is Percocet, or another opioid. Now as far as I knew, she wouldn't use opioids to completely remove the pain, she would just use it to get the pain down to a bearable level. Unfortunately, the doctors don't care about that any more. They are starting to get stingy on who they prescribe opioids to, in part thanks to legislation that penalizes the overprescription of opioids, which essentially makes doctors want to just pass the 'problem patient' on to another doctor.
S went to her orthopedic specialist about the pain, and he just referred her to an orthopedic surgeon. The orthopedic surgeon said that she had to see his practice's pain management specialist. The pain doctor said that she had to do a drug test for illicit substances first, which takes a week to get the results. S provided the sample, and the very next day, the pain doctor's assistant called to say that he decided not to prescribe S anything, even though the drug test results haven't come back yet. Something about 'red flags', but the doctor claimed he wasn't required to give an explanation. S went to her primary care physician, and since he hasn't been the one that has been treating her for the hip pain, he couldn't prescribe anything. He suggested she go to (surprise!!) her orthopedic specialist for pain management.
The circle is now complete, every single one of S's doctors now won't prescribe her anything for pain. This has resulted in S either having to suffer with such significant pain, or to take NSAIDs, but with a recovering ulcer, that isn't a good idea.
S has gotten so frustrated with this, that she is ready to give up on everything. She is ready to give up on the doctors possibly being able to help improve her quality of life. She is ready to give up on her life-long dream of going to PA school and be someone who can help others with their problems. She is ready to give up on our boys and making sure she is there to watch them get married and finally be able to have 'daughters of her own' and hold her grandchildren in her arms, and she is ready to give up on us, even after our over 15 years of marital bliss. She has contemplated suicide.
I pointed out to S that this is just one hurdle, not the end of the world, but she isn't buying my positive spin on events any longer. She has never been great at separating problems she is going through and handling them one at a time. But this. This abject refusal by the medical world to take care of her when she is in a time of need has resulted in me no longer being effective as a caretaker. All I can do now is help her with things that she needs, when she asks it (which is rarely because of her pride and stubbornness), and watch and wait, and hope. Hope she will get through this. Hope she recovers from this hip discomfort. Hope the doctors can find a way to help her. Hope I will still have another 53 wonderful years with her. Hope. Hope. hope.
I am mad at the legislation that caused all of these problems, I am mad at the doctors for not working inside of the legislation to still at least get her some relief. I am mad at S for not being receptive to my ministrations, and not being open to hope. I am mad at myself for not being able to do anything about this. I am even perhaps mad at God for allowing so much bad to happen to one single person. I am silently screaming out!!!
Silent Care
Let me introduce the main characters of this very real story. I am a 37 year old husband of an extremely wonderful, beautiful (even if she doesn't see it), and intelligent wife, herself of 37 years. She is going to school to retake some prerequisites that she needs to be able to get into PA school. She has always dreamed of being a doctor. When we started our family (very early and unexpectedly), she had given that up for the time, and now sees being a PA as a great way to get back into what she loves doing best. Our boys are old enough that she has the time to be able to go to school, and my job allows me to work from home, so the time is ripe for her to pursue her ambition.
It has been a year now since my wife has felt "whole". This is not your typical 'caregiver/family member-in-need story'. It isn't a mother who had a stroke and now is difficult to understand what she says, feels, or needs. It isn't an aging person, reaching death's door. It isn't a quadriplegic who has need of assistance for even the most basic functions. No, no, it isn't that severe, so what do I have to complain about? Well, please, please hear me out... Fine, if you don't want to, then feel free to leave. This blog isn't private, but it is also not required reading, at least not from the author's perspective.
A year. I wonder if that is what has made her more frustrated lately. I suppose that could be why she talks like everything is so hopeless right now. But because of all of her self-pity, the one person whom I should always be able to rely on, who even on her bad days is still my better half, isn't meeting my emotional needs.
Okay, let me go back a bit. On second thought, maybe to get a better perspective, I need to go back a LOT. My wife (we will call her S for convenience) has been through the wringer. Nine years ago, while she was pregnant with our second son, S had such severe Hyperemesis Gravidarum, that she couldn't keep anything down, even sips of water or her favorite calming beverage: Mountain Dew. Because of this, the doctors decided she needed a permanent IV line, so she could do IVs at home. This didn't last long, as she started having pain near where the IV line output was, deep inside her veins, right near her heart. The MDs feared the PICC line was too close to her heart valves causing the discomfort, and did an ultrasound to verify its placement.
This ultrasound shook our world. It was a 7 on the Richter scale size shake: she had a tumor near her Thyroid gland. The biopsy the next week revealed it to be Thyroid Cancer. She was pregnant, and the doctors decided to leave it in until she delivered. The PICC line was removed because regardless of the positioning, it just still hurt. Then she had to go get IV fluids 2x a week until she delivered. Oh, and she had Hip Dysplasia while she was pregnant too, which in itself is common enough, but just remember that for later.
After S delivered a beautiful but colicky boy, who wouldn't fall asleep unless I drove him around listening to 80s music, she had that first surgery of what would be a string of surgeries for the next 8 years. They removed the tumor and her thyroid, because it was abnormal as well. Then she had to be kept hypothyroidic and on a very strict low iodine diet (you have no idea how frustratingly difficult that is) to starve the remaining cancer cells, so that they would jump at the radioactive iodine that she was later treated with. It was a simple pill, inside a small metal canister, inside of a larger metal ammo can-sized box, which she couldn't open until the tech was on the completely other side of the room.
When you are radioactive, you have to be isolated for 7-10 days, depending on how strong the radiation is. S got bored, but made it through. This had to occur again 6 months later, but after that, she has not had a reemergence of Thyroid Cancer since.
The next summer, S had some sudden attacks of pain that were making it hard to breathe, and two or three separate times at the ER were wasted by MDs just deciding it was pleurisy, and even one time an ER MD said that it was just a panic attack! Then at another ER visit that a friend drove her to, the friend asked the MD if it could have been Gall Stones, and sure enough, the MD listened to S's friend, and ran the tests, and sure enough, Gall Stones. The Gall Bladder surgery took longer to recover, because she had some additional Gall Stones stuck in the Common Bile Duct, which were quite unpleasant to remove.
Only a year or two later, S had Appendicitis and had her Appendix removed. This time, it fortunately was identified early and taken care of quickly. Still, S doesn't recover from injury or surgery following the average patient time span, and the long recovery time ensued.
Then some time later, to help her with weight control, S had Gastric Bypass surgery, which came with its own complications: two Strictures, which is scar tissue that prevents almost anything from exiting the tiny pouch that was now her stomach. Eventually she recovered, but now she can't take NSAIDs, because Gastric Bypass heavily increases the likelihood of Ulcers from NSAIDs.
Fast-forward only 2 more years to mid-2017. S's periods were so horrible that the Ablation that her OB/GYN initially performed to provide S relief had little lasting effect, so a Hysterectomy was in order. This was just as horrible to recover from as the Gastric Bypass surgery, and for an inexplicable cause, while she was still recovering from that, her hip started hurting severely.
This is where everything stopped being straightforward. This is when she essentially never fully recovered. Up to this point, each medical need was mostly clear as to what was the problem. But now, things started being less sure. S went to several doctors to figure out what was wrong with her hip, and they started with treatment for Bursitis, which had little effect, and then they treated her for a neurological problem in her hip, which also only made a little improvement. This is why I had you remember the Hip Dysplasia back when she was pregnant. Hip problems on that one hip now began to be omnipresent.
About six months after the hip pain started, they finally ordered an MRI, where they discovered that S's Labrum was 75% torn, and it needed to be surgically repaired. They didn't get to this surgery until March 2018, and if you have ever had hip surgery, even orthoscopic, it takes quite some time to recover. She was stuck in the bed for quite some time.
When S finally started experiencing some improvement on how much weight she could put on the hip and it was starting to feel a bit better, she passed out in her Anatomy Lab. She was only out for a second or two, but that was long enough to fall off the tall stool she was sitting on and land heavily on her recovering hip... Fractured. She stayed off of it for a few weeks, and it seemed to be improving (again), but the number of times she would pass out started increasing, up until the point that she would be laying in bed and still passed out. The day that I drove her to work (as a Medical Assistant at a primary care physician's office) and she passed out just as getting through the door, we realized this was serious and she needed to have this sorted out.
She was first referred to a Cardiologist, where they orded an Echo Cardiogram and a 48-hour Holter monitor, and declared it to be Postural Orthostatic Tachycardia Syndrome, or POTS. We were frustrated because it sounded like he was just throwing her in some 'can't tell what's wrong with you' bucket. Just like when she was diagnosed with IBS several years before. We wanted more information.
We started by looking online, and talking to S's primary care physician, which actually both gave us lots of hope, and a bit of an idea what this entails and what to do next. So we made an appointment with a neurologist, where we hoped to get more specifics and further her treatment plan.
At the neurology appointment, while I was checking her in, she went to the ground and began writhing and crying from excruciating pain in her abdomen. The Drs. came up from the back to check on her, and they had the front desk assistants call 911. This office was directly across from the ER, so we got her over there, and pain medicine helped, but the real cause couldn't be identified, so they prescribed her medicine that stops intestinal spasms per our suggestion that it might be related to POTS, which gradually helped her out.
We finally got her to see the neurologist, who ordered a tilt-table test and EEG. This all confirmed that she had POTS, and not a worse neurological issue that first presents the same.
And once again, things seemed to begin improving. She got back to working part time. She could sense when she was about to pass out so she could get on the ground, but even those occurrences began waning. We were finally winning the battle! But then a new problem began to arise. S started having stomach discomfort again, but while it wasn't acute pain this time, it was accompanied by significant nausea, which caused food to start coming up frequently. Her GI ordered an endoscopy and revealed an ulcer, which takes time to heal.
This whole time, her hip was still sore, but not getting any worse, until she passed out again, and landed on it... again.
By now you would think that everything I have mentioned above is the real reason this caregiver had reached a breaking point: that I had had enough of medical problems and doctor appointments, and needing to make sure she doesn't overdo it on the days she is feeling mildly better. There is where you would be wrong. I can handle helping her with even the most basic of needs. I am always happy to drive her places when she needs it. I am happy to bring her things from the kitchen that might even be only a dozen steps from where S is sitting, because that means that I can keep her from doing something that will be uncomfortable for her.
What I can't handle very well, is not being able to help her see the positive side of things. I can't just sit idly by and see her be unhappy and feel completely helpless at comforting her. Next comes my breaking point.
By now, you can see that S has gone through a lot, and that she has seen her share of pain med needs. However, since the problems aren't all in one specific area of specialty, she has had pain meds prescribed by several different doctors. Remember how I told you she shouldn't have NSAIDs because of her Gastric Bypass? Because of that, when she is in significant pain, there isn't an over the counter option she can take to help with it. The only help is Percocet, or another opioid. Now as far as I knew, she wouldn't use opioids to completely remove the pain, she would just use it to get the pain down to a bearable level. Unfortunately, the doctors don't care about that any more. They are starting to get stingy on who they prescribe opioids to, in part thanks to legislation that penalizes the overprescription of opioids, which essentially makes doctors want to just pass the 'problem patient' on to another doctor.
S went to her orthopedic specialist about the pain, and he just referred her to an orthopedic surgeon. The orthopedic surgeon said that she had to see his practice's pain management specialist. The pain doctor said that she had to do a drug test for illicit substances first, which takes a week to get the results. S provided the sample, and the very next day, the pain doctor's assistant called to say that he decided not to prescribe S anything, even though the drug test results haven't come back yet. Something about 'red flags', but the doctor claimed he wasn't required to give an explanation. S went to her primary care physician, and since he hasn't been the one that has been treating her for the hip pain, he couldn't prescribe anything. He suggested she go to (surprise!!) her orthopedic specialist for pain management.
The circle is now complete, every single one of S's doctors now won't prescribe her anything for pain. This has resulted in S either having to suffer with such significant pain, or to take NSAIDs, but with a recovering ulcer, that isn't a good idea.
S has gotten so frustrated with this, that she is ready to give up on everything. She is ready to give up on the doctors possibly being able to help improve her quality of life. She is ready to give up on her life-long dream of going to PA school and be someone who can help others with their problems. She is ready to give up on our boys and making sure she is there to watch them get married and finally be able to have 'daughters of her own' and hold her grandchildren in her arms, and she is ready to give up on us, even after our over 15 years of marital bliss. She has contemplated suicide.
I pointed out to S that this is just one hurdle, not the end of the world, but she isn't buying my positive spin on events any longer. She has never been great at separating problems she is going through and handling them one at a time. But this. This abject refusal by the medical world to take care of her when she is in a time of need has resulted in me no longer being effective as a caretaker. All I can do now is help her with things that she needs, when she asks it (which is rarely because of her pride and stubbornness), and watch and wait, and hope. Hope she will get through this. Hope she recovers from this hip discomfort. Hope the doctors can find a way to help her. Hope I will still have another 53 wonderful years with her. Hope. Hope. hope.
I am mad at the legislation that caused all of these problems, I am mad at the doctors for not working inside of the legislation to still at least get her some relief. I am mad at S for not being receptive to my ministrations, and not being open to hope. I am mad at myself for not being able to do anything about this. I am even perhaps mad at God for allowing so much bad to happen to one single person. I am silently screaming out!!!
Silent Care
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