“Some people believe space is the final frontier(….pause to see if any students get the Star Trek reference).
Others believe our greatest unearthed worldly wonders lie within the depths of our oceans.
I’m going to suggest that we need not shoot a probe into space nor plumb the deepest seas to marvel at our greatest mystery: all we need to do is look within these neuro noggins(wrap knuckles on top of skull)of ours and examine the 3 pound mound of folds and jellied flesh we call our brains.
Our complex brains separate us from(probably) every other species on earth.
They serve as the seat of our consciousness.
They are the source of life–without a fully-functioning brain, there would be no awareness, there would be no heartbeat, even worse–there’d be no Intro to Psychology course!!!
Without a brain, I’d be out of a job!
Yet we know less about the brain–our source of life–than we do any other body part.”
So begins my first lecture on the brain in my Intro to Psychology course(yes, people actually pay me money to educate the youth of today–scary, I know).
We spend maybe 3 classes on the brain, barely skimming the surface of the staggeringly intricate innerworkings of chemistry, biology, physics, engineering…and the list just keeps on going.
Estimates suggest that there are more potential connections of neural pathways in the brain(evidence of the brain’s communication/information superhighway so to speak) than there are stars in the known universe.
I’m not a numbers gal, but even I know that’s a hella-lot.
The brain is hella-complicated.
I start off this post the way I start off my lectures on the brain to suggest this: We are not even in the infancy stages of understanding our brains; I suggest we’re still in neo-neural-natal stages.
Heck, we’re still learning about new brain structures tunnels in brain. Rosehip neurons
With all the challenges expert researches face in fully understanding such a convoluted structure, it comes as no surprise that the general medical community is often left scratching their collective heads when faced with how to appropriately identify, diagnose and treat patients with neurodegenerative issues.
In my previous post, I shared my frustrations at the seemingly arbitrary requirements needed for acceptance into hospice when diagnosed with a fatal, degenerative neurological condition.
This post hopes to delve into the above-mentioned challenges a bit further.
So I decided to strap up my spiked sleuthing boots and spielunk into the cavern that is hospice.
And, sadly, I can’t say I’m much more informed than I was prior to my info-mining quest, at least not as far as neurodegenerative diseases are concerned.
I’ve already mentioned one of the challenges in understanding if and when an individual with a life-limiting brain disease is appropriate for hospice–understanding(or lack thereof) of the brain itself.
Let’s move onto another key hospice criteria—time.
As I’ve mentioned in previous posts, in terms of eligibility, hospice is looking for a patient to not have much of it—6 months or less to be precise.
Of course, no one is walking around with an expiration date tattooed on his/her forehead, so this is a subjective determination.
But the life-trajectory of some terminal illnesses are a lot easier to gauge if we’re talking a reasonable likelihood of death within 6 months.
End-stage aggressive cancers, congestive heart failure, liver failures—all of these diagnoses usually carry with them some clearly measurable variables that suggest the patient is “dying”(here’s a link to a “scorecard” of sorts for various illnesses and their requirements for acceptance Hospice Score Card )
With brain disease, those clear variables aren’t always so “clear”.
The following link is from the National Hospice and Palliative Care Organization Dementia codes
It is a nine page document(nine pages!!!!) listing all of the ICD 10 dementia-related diagnoses that CAN’T be used as a primary diagnosis for hospice admission.
That’s nine pages of diagnoses JUST related to dementia.
Now, if we’re talking primary brain tumors(which some would debate are not “technically” cancer since they don’t usually metastasize), often the individual affected doesn’t have the same symptoms seen in more “traditional” cancers.
One thing you don’t want to see in a traditional cancer is evidence that the cancer has “spread” to another body part. As far as staging of the seriousness of the disease, however, this is a clear, objective measure that usually indicates disease progression.
With primary brain tumors(those that originated in the brain), the tumors don’t often “spread” outside of the brain.
So it’s not like your brain tumor is likely to spread to your liver or stomach or breast.
Sure, the reverse can happen and often does(breast cancer that metastasizes to the brain), but we usually don’t see it the other way around.
With most brain tumors, there are no separate body parts affected and, as such, the clear, objective measurements of disease progression are much less—well, clear.
In my experience, at least with Jamey, the symptoms he experienced his last three years were much more analogous to those symptoms displayed by someone with dementia.
So basically, with both dementia and brain tumor diagnoses, we know these conditions are both life-limiting.
We know there will be decline.
We know the individuals affected will likely succumb to some symptom(s)of their disease.
The brain’s where it all starts and stops, folks. If that ain’t workin’ ain’t nothing else workin.
But what’s less evident is “when” that will happen.
And since one of the criteria for admission into hospice is “when”(likely six months or less), the dilemma faced by patients, caregivers and friends of those with these disorders is obvious.
So what can we do to make sure that not only the patients affected, but the caregivers and friends of those with neurodegenerative diseases maintain their respective qualities of life for as long as possible?
Frankly, I don’t know.
I do believe a change is coming(I’ll talk more about that in my next post), but I don’t know how swiftly it will occur.
Being informed is helpful, of course.
I’d suggest talking to your doctors, obviously, but not necessarily taking their word as bond.
In previous posts, I recounted the “break-up” convo we had with Jamey’s oncologist when she gave us the hospice referral.
I had a ton of questions for her.
She had zero answers.
Something similar happened with my mom’s primary care physician.
Her doc was the first to broach the idea of hospice for her, an opinion that(from what I can remember at least)was based on the fact that she’d lost 10%of her body weight.
While that was true, there were many other factors that actually prevented her from being accepted into hospice the first time.
So in my case, the two doctors who made the (futile) hospice referrals didn’t even know much about the hows or whys.
When even medical professionals are at a loss of how to handle those with end-stage neurodegenerative illnesses, it’s no wonder the average Joe or JoAnn feels helpless and frustrated.
All I can say is that if there is a shift in the way we view all neurodegenerative issues(brain tumors, dementias, Parkinson’s, Traumatic Brain Injuries, etc) I hope my brain is still in good enough shape to appreciate the significance.
Headed Into Overtime 
Hi Kim, always so glad to see your posts! My comment didn’t go through,
(argh) so I’m trying again with this little greeting. I’m thinking on what you wrote and I will try again later.
Peace,
Judy
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Trying again, I think I just dawdled too long the first time…I went back and read the first part of this subject and then I found a 2014 NYT article on for profit vs, nonprofit hospice setups that was kind of interesting and really sad to read. It addressed the in and out of hospice dynamic that is at the total opposite end of the spectrum from the peace and sliding down that should happen at the end of a long illness but doesn’t happen very often.
Not throwing them all under the bus, mind you, but Hospices ( not all, if course) that are for profit lean toward bouncing the patient out when the end of life care starts getting more labor intensive ( expensive) because of their relationship to Medicare. They get paid one rate regardless of the level of care a patient needs. There are caps on what Medicare will pay to hospice and other complicated things over my head but they sound really bad for the patient and families. They also will take patients sooner as in the entry gate with for profit hospices is wider than the one for non profits.
< Makes sense, I have worked for various nonprofits, just because I liked to do it but it was more of a vocation with no overtime but long hours then a job that actually paid the bills. )
And That 'bouncing', as in; ' bye now, expensive patient, you aren't dying fast enough' can be a little more dramatic if the care is at home rather than in long term care. I can't imagine what entails the abandoning there? I guess the nurses pack up the commode, roll the hospital bed to the curb, the happy pills that kept the patient calm and just leave? It all comes down to coding, authorization and chains of command, I guess. But that all takes time to iron out the caregiver has to have a part in the changes and bumps wether they want to or not.
Then there is the switch in philosophy ( don't know if I'm using the right word here) behind the care. The hospice patient not getting treated, not having to endure this or that needle stick, or test/ scan, time in the hospital ( all awful) while in hospice ends up in the emergency room in their final days and, at least in the fog of the crisis that landed them there, well, here comes the docs and nurses with needles, the tests, etc.
I'm witnessing this tug o war going on with a friend's aging father with dementia. In hospice, out of hospice. Them asking, 'did we jump the gun? He's doing a little better, but still dying. What now?
Another caregiver friend's husband is actually steering the ship with the 'in, out' thing. He demanded to be released from hospice, even with obvious end of life stuff going on and refused treatment for things other than cancer which were going to kill him first. But decided he wants to go into a clinical trial. So out of hospice, back to all the doctor appointments with a frazzled scared wife who can't get him in and out of the car. Two weeks of that,; tests, MRIs, being offered it then starting another round of chemo ( clinical trial) and then so many complications from other health issues that never mind…he's back IN hospice
Anyhow, who wants to go thru that while they are watching their loved one die?
Kim, I really felt for you when you described your situation with Jamie when it was coming close to time for his hospice review right before he died. The article said on average when a patient ( my words) fails a review and has to leave hospice, they usually die about 2 months later and they are in and out of the hospital via many ER trips. Anyhow, just night mullings. Very gkad to have a place to do it.
thanks!
– Judy
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Hi Kim,
Here I am again, my guys disease took an interesting turn ( it would be more interesting if it weren’t him) and we’ve been on a rollercoaster ride. So just a week after his home health services started, He had a stroke at the house. This was mid September. He walked into the ER with a limp left hand and slurred speech. He had pizza, a rollicking round of visitors who said he looked pretty good for an ICU patient, was ready to get discharged for outpatient rehab to get his hand and mouth working again.
The second night in the hospital he had a whopper siezure. He’s been on anticonvulsants for years for just petit mal siezures but these were the full blown head to toe grand mals. 5 days later and after a second stroke and many siezures and repeated knock out drugs to stop them, he was almost completely paralyzed and they were talking hospice. They upped his anticonvulsants and added a second med and the siezures stopped. He was awake enough to start eating and drinking again and was doing that just fine, was awake and ‘ ready to go home now’ but now was a three person transfer to the toilet, was falling off the toilet, sliding out of chairs, couldn’t roll himself over in bed without two aides, his left side totally gone and I was signing papers to move him into long term care to live there because now, home health was not an option.
I can do custodial,care of a guy who has terrible memory, judgement and needs prompts for everything all day long and I had been doing that because I’m able to be home with him. But he’s 6’4 and almost 200 pounds so after living in the hospital with him seeing what it took to just care for him, I was in tears and signing those long term care papers. He’s too big and too heavy!
They started intense OT and PT in the hospital and gave him every chance to get back on his feet and also to keep his Medicare rolling thru this ‘skilled care’ status that followed him into long term care. I came home nights first as a really soon to be widow, then a ‘long term care’ widow who would be living between home and his new home 40 mins from the house, learning to love bingo and the food at the hospital and wondering how long I could keep pouring fuel in the vehicles to do this new job.
I had nights at home of utter grief ridden decluttering binges and threw out everything that used to piss me off about him ( his fave – fill in the blank- that must never be misplaced, that I couldn’t borrow or use, that must be fixed instead of replaced, even if it was a .10 cent butter knife from the thrift store and so on, but now the annoying clutter just broke my heart amd I couldn’t stand to see these little things in his little world which were so important to him just sitting there.
I got rid of the tv. I don’t watch tv and I hated it because of the stuff I had to sit and watch with him, I donated the couch. It was a space hog in our little house. I turned off the internet, cable, trying to save money. I panicked about credit card debt and where I could start working or even how because I couldn’t think enough to make a pot of coffee. I could barely brush my teeth or sleep. How was I going to show up for a job?
His mobility got a little better, and a little better, he got to where he could stay in a chair and even adjust himself. He learned to pedal around in a wheelchair with his right foot and right hand, His brain finally started recognizing that he had a left arm. This was after several nights night of me adjusting and checking his arm in bed, assuring him that it was indeed his arm. When they had him draw clocks ( the test to check on visual field and awareness) and the images went from bad to worse then not so bad, just wierd, which I took as a great improvement. He started walking he got to go to the bathroom by himself. Learned to tie his shoes, his left hand his whole side, came back and now functions with just about half the strength and almost as much coordination as before. It’s like when they got the siezures stopped, the signals started coming thru again but these siezures almost killed him and he’s still having lots of little focal siezures.
Now he’s getting kicked out of The nursing home because his Medicare coverage is ending ( no more skilled care needed) and his medicaid won’t cover him there because he’s regained so much independence and mobility. He’s coming home Wednesday and I had to undo my mucking out, thank God the trash bags hadn’t left the garage, I returned his coveted little things to their rightful place or come up with a fiblet for whatever I can’t replace. Found a free tv. Home health care will start coverage this week with nursing visits much like they had planned. All his benefits that I had to stop because he was now living in long term care, I have to fill out forms to re-start.
His doctor very gravely told me that this all might have come about because he’s been secretly bucking his meds at home. His blood tests showed he had very low levels of anticonvulsants. I didn’t realize this because he’s always set up his own meds, they aren’t very complicated, just one (very important) anticonvulsant and a few vitamins. The med theory may be a red herring and I don’t know which is worse, tumor progression or him nit taking his meds properly because that is definately been his limit of how much he allows me to care for him and it’s not going to change.
She said if he does this again, we may have entered the revolving door of hospital admits that I never thought would happen and I was doing everything to prevent. So anyhow, that’s been my life since Sep 19. I’ve got him for a little longer, I’ve been happier driving to long term care to see him then driving home. Ugh… I got a teeny bit of an intro to losing him and it was horrible. I don’t even think about a repeat of this and him dying because it’s just too much right now.
I’m very grateful and I’ve got him back home if all goes ok. I didn’t mind undoing my work and resetting things for him to come home because I miss him, even in the brain tumor altered state he exists in now. He’s been that way a long time and I’ve just gotten used to it.
Anyhow, you’re in my circle of support and understanding so I wanted to update you. The therapists have just loved working with him because they were so,fascinated with how fast he declined then rebounded, they had never seen anything like it but I’ve heard from other BT caregivers that they have seen this happen ( not very often but it does happen) with their loved ones in the late stages of the cancer.
Prayers,
Judy
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Oh, Judy! (I feel like I’m starting off a lot of my recent responses to you that way). There are so many things going through my mind after reading this. I’ll try to sort them out.
First, thank you for including me in your circle and updating me on your situation.
I have to admit, outsider looking in, on one level I’m with the therapists. Holy moly! To deteriorate to the point that he did after multiple seizures and rebound—with a BT!?!? How is that even possible? I mean, I guess I understand the motor control issues rebounding since that’s “muscle memory”. Takes place in a different part of the brain than other memories. But to deteriorate, then improve on the clock test? That’s just baffling! Fascinating, but baffling.
On a more personal level, I completely get what you’re saying about wanting to “purge” yourself, your home of all the frustrations, memories you wish you didn’t have, items that triggered those associations….and then having the polar opposite reaction when faced with the possibility of losing the source of those memories entirely. It’s not exactly the same, but I only recently threw out the bottle of shampoo/body wash that Jamey was using before he died. It was still even in the upside-down position he’d left it to eeek out the last few squirts. It was slimy with a blackish mold(probably not healthy, but whatever). I hadn’t even noticed it was there until maybe two years after he’d passed. Then, one day, I looked in the shower and thought, “He placed it there, in the position, upside down. He touched this. He was connected to this”. I couldn’t get myself to chuck it in the recycling for the longest time.
Most of our “shared” accounts are still in his name as well—checking, phone, electric. Part of it is laziness on my part, I’ll admit. Part of it is my inability to “part”.
I get it. Totally.
As for the “rebound/BT” issue; Jamey had a minor(or I guess you could argue major) one right before he died.
The night after he was admitted to the hospital with his multiple seizures, they prepared me for the very real possibility he would pass some time that night, at worst. At best, they suggested he would never gain consciousness again. With this grim news, I contacted his family and they all were around his bedside by mid-day the next day. Not only did he not die that night. Not only did he regain consciousness, but he recognized, by specific name every person who’d come to visit him. He even joked around a bit with his classic dry wit. For a while, I thought he might have once again “beaten the odds”. We both know how that eventually ended, but those last few hours of “Jamey” were worth more to me and his family than anything.
I hope, wherever this circuitous route leads you and your man, you are able to flow through this journey with your faith (and sanity) intact.
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Hello and thanks for the reply, yes, he’s in rebound mode for sure. All kinds of new impairments but he’s safe here at the house and I can still take care of him. The circus of caregiving has come back home for a little while. I’m looking at him in his recliner tonight browsing thru a seed catalogue and it makes for a nice mental picture for later.
You know the motor control issues could be explained away by a condition called ‘Todd’s Paralysis’. The cluster of symptoms around his siezures, the types of siezures he was having all fit in that description of a pretty rare condition.
But his vision getting better I.e. The ‘clock test’ is a puzzle for sure. And everything changing so fast….well, two sides to that deal, he’s not stable by any stretch. Holding onto my hat for what comes next.
The purging of his stuff then undoing it all was all about just what you described. Then there was the effort to put it all back which had more to do with not getting busted! The ‘where’s my…’ Has already started and when I tell him I don’t know, that it was a really crazy time here at home while he was in the nursing home that’s no lie.
Will keep in touch, thank you for the beautiful story of your last few hours with your husband. That’s hope for me. During the majority of my husbands hospital and nursing home stay he was frightened, in pain, angry and having major nic fits. But the morning we all thought he was leaving this earth, he was calm and he knew it was raining despite being in this hermetically sealed, rather noisy building. I asked him later how he knew this and he said he could smell and hear the rain. His doctor said he definately had one foot in the next world that morning. I will always think moments like that were nice gifts for him. That being said, it’s pretty wierd to have him sitting here tonight watching his old westerns. Such a rollercoaster ride.
Take care and God Bless,
Judy
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