Jump ahead eight long years. My Dad lived until 2017, thanks to a lot of intervention and support by his whole family. It was heartbreaking to watch his world shrink, but he had an indomitable will to live, and live he did!
Rereading this blog has brought back so many memories for me. There is just so little I can say to help others going through the same thing. I can only think of three things that really matter:
1. Don't try to do it from a distance. Often, we have no choice, but it sucks big time to try to emotionally support your parent that is 2,000 miles away. You can never fully relax.
2. Do write up a list of symptoms early on, and keep the list. That list was helpful in many ways. I actually got the IRS to reverse years of unpaid penalties for late filings, thanks to my list and copies of doctor's reports. Once you pay a penalty, though, the IRS will keep it.
3. If (when) your parent breaks a bone and is sent to a rehab center, aka skilled nursing, be aware that many people die there. My Dad's good friend died 6 weeks before he broke his hip. She fell out of her bed and landed on her face. My Dad's (un)skilled nurses insisted that they couldn't put up bed rails because of state laws. After much discussion back and forth (never give up, just wear them down politely), they mentioned that they could put his bed on the floor. Hey, what a great idea! They also agreed to put a seat belt on his wheelchair and slide the release mechanism to the back. This, after I was talking to him on the phone and he tried to get up out of his wheelchair because he forgot he had a broken hip. I heard the fall and scream. Had I not, well, who knows.
Oh and maybe one more thing:
4. When you get a call from skilled nursing that your parent has ESCAPED, don't panic. It means he is ready to leave. Nurse told me he was hallucinating and waiting for a trolley, and they couldn't find his seatbelt. Um, there IS a trolley that drives by every half hour.
By the way, Dad, what happened to your seatbelt? "I hid it under the bed." Released the next morning.
Wednesday, August 29, 2018
Thursday, January 14, 2010
Neurology: The Epitome of the Anti-Climax
Neurologists hold a special place in my heart. It's the (hopefully small) place that is full of anger and frustration and black goo. If I ever have a heart attack, it's the weak spot that will blow. And I'll know who to blame.
Of course, I'm here to help the reader avoid this. First, take off any blinders you may have. Just because they are neurologists, don't assume that they know how to think or plan or do anything useful whatsoever. Nothing could be further from the truth.
My Dad has seen his share of neurologists. Most times, the neurologists seem much more interested in, well, something else. Or maybe nothing else, as they are kind of dull. They are certainly not interested in their patients. Especially a patient that isn't all there. A patient who was once light years smarter than the fool doctor but who is now struggling to communicate, to explain, to break free of the chains.
Second, disabuse yourself of the notion that the neurologist is going to use his/her years of education, research, experience, and now highly lucrative practice to provide you with any kind of helpful information. Just because it is your parent's very life we are talking about, just because it is one of the more important appointments they (and you) will ever have, don't think that the good doctor cares. Not one whit. His goal is to get rid of you as fast as possible. They listen for a short while, avoid looking you in the eye, say something unintelligble, give you a few mealy mouthed answers to your questions, then sail smoothly out the door. Leaving you strangely unsated.
I was shocked that the first neurologist used no medical terms to describe the condition. Be sure to request a copy of the doctor's written report (and then you'll have to look up a number of weird terms). That's how I found out that my Dad had hydrocephalus. I think the good neurologist talked about how the brain was eroding, there was an old stroke, and there was a fluid build up that was putting pressure on the brain and needed to be drained, but no one would touch him because of his age (84). That latter part turned out to be untrue.
Neurologists can take months to get into for an appointment, then the Oldster has to go for an MRI, then another month or two to get another appointment so the "neuron" (singular) can interpret the results. They won't talk to you on the phone, even if you have a Medical Power of Attorney, which every other doctor will honor. No, neurons are just too busy to be bothered with the fact that their Oldster patient is living alone (or almost) and the Childster is trying desperately to figure out the best answer for care. That the Childster is on leave, not earning a salary, not sleeping, not knowing how to proceed, not wanting to force her Dad into assisted care if there is some hope he can live independently. Did I mention not sleeping?
Oh no, the neuron doesn't want to be bothered. Your Oldster could be dying of hunger from forgetting to eat and you still won't get by the neuron's receptionist. As gatekeepers, there is none better than the neurology receptionist. You must need a PhD in gatekeeping to get the neurology receptionist job. I called four times and spoke to two different people, and couldn't get the neurologist to talk to me, much less look at the MRI because he "was way behind and actually coming in one extra day a week to catch up." That extra day was a weekday, because he didn't actually work full-time. Poor dittums.
But that's not the half of it. Should you need to check your Oldster into the hospital, you will stay an extra day because Neurology--with it's own wing in the hospital--can't figure out how to schedule MRIs and labs in such a way as to actually do the procedure on the scheduled day. After I threw a fit, they decided to look into this scheduling problem, which they had been having for years. YEARS?
Medicare paid for the extra day in the hospital, so I guess it just wasn't important enough to figure out that patients need to arrive at 10 am instead of 1 pm. I knew the schedule wasn't going to work a month beforehand. And when it didn't, even after I got my Dad there much earlier than requested, I may have had a few things to say about it. "It doesn't take a brain surgeon to figure out that after a one-and-a-half hour MRI, sitting in the lab for two hours, and then getting checked into the room, we aren't going to get the procedure done today as promised. Oh wait a minute...you ARE brain surgeons!" It didn't help my state of mind that my poor Dad probably walked a half mile that day, and the primary symptom of his diagnosed condition (hydrocephalus) is...wait for it...gait problems (difficulty walking).
If you are really, really lucky, the next day you will get to squirm, I mean watch, as an old neurologist with a clearly shaking hand puts a needle into your Dad's spine, while a bunch of young intern neurologists watch. No one mentioning the Parkinsonian-like body stiffness and hand shaking of the NeurOldster. At least five brain surgeons in the room. Hellooooooo. Is anybody home???????
This is not a community hospital we are talking about. It is a nationally respected hospital and neurology program.
Seriously. They are effing brain surgeons!!!!!! I guess you must learn how not to use your brain to think or question or feel in order to become a neurologist. No wonder they are so dull.
In the long run, what became obvious to me is that they are all just guessing, wingin' it. I think that's why they can't look you in the eye. Or maybe they are afraid that people can't handle the truth. But honestly, isn't that their job?
The other thing I've learned is that neurology isn't a very rewarding career. They say if you marry for money, you earn it. Well, I think neurologists suffer the same fate. Great money, if you can stand the monotony. And the shame.
Of course, I'm here to help the reader avoid this. First, take off any blinders you may have. Just because they are neurologists, don't assume that they know how to think or plan or do anything useful whatsoever. Nothing could be further from the truth.
My Dad has seen his share of neurologists. Most times, the neurologists seem much more interested in, well, something else. Or maybe nothing else, as they are kind of dull. They are certainly not interested in their patients. Especially a patient that isn't all there. A patient who was once light years smarter than the fool doctor but who is now struggling to communicate, to explain, to break free of the chains.
Second, disabuse yourself of the notion that the neurologist is going to use his/her years of education, research, experience, and now highly lucrative practice to provide you with any kind of helpful information. Just because it is your parent's very life we are talking about, just because it is one of the more important appointments they (and you) will ever have, don't think that the good doctor cares. Not one whit. His goal is to get rid of you as fast as possible. They listen for a short while, avoid looking you in the eye, say something unintelligble, give you a few mealy mouthed answers to your questions, then sail smoothly out the door. Leaving you strangely unsated.
I was shocked that the first neurologist used no medical terms to describe the condition. Be sure to request a copy of the doctor's written report (and then you'll have to look up a number of weird terms). That's how I found out that my Dad had hydrocephalus. I think the good neurologist talked about how the brain was eroding, there was an old stroke, and there was a fluid build up that was putting pressure on the brain and needed to be drained, but no one would touch him because of his age (84). That latter part turned out to be untrue.
Neurologists can take months to get into for an appointment, then the Oldster has to go for an MRI, then another month or two to get another appointment so the "neuron" (singular) can interpret the results. They won't talk to you on the phone, even if you have a Medical Power of Attorney, which every other doctor will honor. No, neurons are just too busy to be bothered with the fact that their Oldster patient is living alone (or almost) and the Childster is trying desperately to figure out the best answer for care. That the Childster is on leave, not earning a salary, not sleeping, not knowing how to proceed, not wanting to force her Dad into assisted care if there is some hope he can live independently. Did I mention not sleeping?
Oh no, the neuron doesn't want to be bothered. Your Oldster could be dying of hunger from forgetting to eat and you still won't get by the neuron's receptionist. As gatekeepers, there is none better than the neurology receptionist. You must need a PhD in gatekeeping to get the neurology receptionist job. I called four times and spoke to two different people, and couldn't get the neurologist to talk to me, much less look at the MRI because he "was way behind and actually coming in one extra day a week to catch up." That extra day was a weekday, because he didn't actually work full-time. Poor dittums.
But that's not the half of it. Should you need to check your Oldster into the hospital, you will stay an extra day because Neurology--with it's own wing in the hospital--can't figure out how to schedule MRIs and labs in such a way as to actually do the procedure on the scheduled day. After I threw a fit, they decided to look into this scheduling problem, which they had been having for years. YEARS?
Medicare paid for the extra day in the hospital, so I guess it just wasn't important enough to figure out that patients need to arrive at 10 am instead of 1 pm. I knew the schedule wasn't going to work a month beforehand. And when it didn't, even after I got my Dad there much earlier than requested, I may have had a few things to say about it. "It doesn't take a brain surgeon to figure out that after a one-and-a-half hour MRI, sitting in the lab for two hours, and then getting checked into the room, we aren't going to get the procedure done today as promised. Oh wait a minute...you ARE brain surgeons!" It didn't help my state of mind that my poor Dad probably walked a half mile that day, and the primary symptom of his diagnosed condition (hydrocephalus) is...wait for it...gait problems (difficulty walking).
If you are really, really lucky, the next day you will get to squirm, I mean watch, as an old neurologist with a clearly shaking hand puts a needle into your Dad's spine, while a bunch of young intern neurologists watch. No one mentioning the Parkinsonian-like body stiffness and hand shaking of the NeurOldster. At least five brain surgeons in the room. Hellooooooo. Is anybody home???????
This is not a community hospital we are talking about. It is a nationally respected hospital and neurology program.
Seriously. They are effing brain surgeons!!!!!! I guess you must learn how not to use your brain to think or question or feel in order to become a neurologist. No wonder they are so dull.
In the long run, what became obvious to me is that they are all just guessing, wingin' it. I think that's why they can't look you in the eye. Or maybe they are afraid that people can't handle the truth. But honestly, isn't that their job?
The other thing I've learned is that neurology isn't a very rewarding career. They say if you marry for money, you earn it. Well, I think neurologists suffer the same fate. Great money, if you can stand the monotony. And the shame.
Monday, January 11, 2010
Is It Alzheimer's? Step Three for the Diligent and the Doomed
Once I had my list, I started researching. Step 3 is all about the research. Yes, the doctors get the final say, but I learned a lot along the way, about myself, my dad, and many issues besides the answers to the most obvious questions. My Dad had weird symptoms, and I kept searching on those symptoms.
For instance, I learned about Sundowners. Sundowners is basically when symptoms get worse, often much worse, after dark. My Dad gets more confused later in the day, though he doesn't really have Sundowners. But a lot of people deal with this, and it can be pretty bad. So I had something to be grateful for.
I also found information that talked about how delicate the very elderly are. Even in his Eighties, my military-trained bomber pilot Dad is a force to be reckoned with. But losing his eyesight and ability to do calisthenics twice a day was like falling off a cliff. There is some evidence that just one thing can really destroy the Oldsters health--loss of hearing, sight, too many medications interacting (obviously), lack of light, lack of exercise, poor sleep, etc. So it was important to deal with the myriad issues that surfaced when I got heavily involved. Even issues that he just complained about as minor disturbances. It was important to listen to him and his girlfriend, and luckily they both were very communicative.
We got my Dad into physical therapy (Medicare paid!), which had an almost immediate impact, helping his cognitive AND physical abilities. We also took care of his cataracts and improved the urinary problems that were disturbing his sleep.
And of course, I looked into all the possible diagnoses. I read over the cognitive tests, and found that I could tell which ones my Dad would pass and which ones would give him troubles. I found myself steering towards Parkinson's related dementia, hydrocephalus, and maybe a little Lewy Bodies. Not Alzheimers. All while waiting for the Neurologist. And waiting. And waiting.
For instance, I learned about Sundowners. Sundowners is basically when symptoms get worse, often much worse, after dark. My Dad gets more confused later in the day, though he doesn't really have Sundowners. But a lot of people deal with this, and it can be pretty bad. So I had something to be grateful for.
I also found information that talked about how delicate the very elderly are. Even in his Eighties, my military-trained bomber pilot Dad is a force to be reckoned with. But losing his eyesight and ability to do calisthenics twice a day was like falling off a cliff. There is some evidence that just one thing can really destroy the Oldsters health--loss of hearing, sight, too many medications interacting (obviously), lack of light, lack of exercise, poor sleep, etc. So it was important to deal with the myriad issues that surfaced when I got heavily involved. Even issues that he just complained about as minor disturbances. It was important to listen to him and his girlfriend, and luckily they both were very communicative.
We got my Dad into physical therapy (Medicare paid!), which had an almost immediate impact, helping his cognitive AND physical abilities. We also took care of his cataracts and improved the urinary problems that were disturbing his sleep.
And of course, I looked into all the possible diagnoses. I read over the cognitive tests, and found that I could tell which ones my Dad would pass and which ones would give him troubles. I found myself steering towards Parkinson's related dementia, hydrocephalus, and maybe a little Lewy Bodies. Not Alzheimers. All while waiting for the Neurologist. And waiting. And waiting.
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