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.

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.

Is It Alzheimer's? Step Two for the "Lucky"

Step Two is for really lucky childsters. Take your parent to a geriatric specialist--a geriatrician--for a full assessment. Don't rely on the same old doctor that they have been going to for years, unless of course you are hoping to kill your parent off early.

The geriatrician will solve all your problems, right? Diagnose the memory and physical problems, make recommendations for long term care, and generally improve the Oldster's quality of life. Right?

Dream on.

Actually, I didn't get my dad to a geriatrician until after seeing many other doctors and after I'd moved him and we'd both gone through hell. Now that we have finally found a good geriatrician, we love him. Finding him sooner may have saved us considerable time and frustration, not the least of which was dealing with the Neurologist. You haven't experienced true frustration until you've dealt with a Neurologist. More on that later.

Even if you are lucky enough to get your Oldster into a geriatrician, you still have lots of doctors to see. My priority was to get a diagnosis, treatment options, and someone else to validate what I already knew...that he couldn't live alone and he couldn't live 2 hours from friends and family.

I also had to handle his financial affairs and his business. And I had to do it all perfectly, as he and I are both perfectionists. But my true priority was improving his health and stabilizing the situation.

One thing I discovered from my research is that, for the Oldster, loss of hearing or sight can throw them over the edge. So over a period of 4-5 months, I set up lots of appointments--with all new doctors. This was facilitated by the fact that he moved to another city to be close to family.

Boy did he need new doctors. His old opthamologist said he didn't have cataracts and that there was nothing to be done about my Dad's failing eye sight. A new opthamologist said he had horrible cataracts that had been there for a long, long time. Two cataract surgeries later, Dad barely uses glasses.

And it was not just the opthamologist. The general practitioner and urologist seemed to be trying to kill him off.

Yes, I know. There is no way your parent will let you do this stuff. And you don't have time, or you live far away. You can't make all these appointments and lead your own life, too. But you do it anyway. There is just no other choice. You love your parent dearly, and they need you now. I didn't sleep for 6 months, knowing what had to be done. I knew before he did. That was horrible for me, and unfair to him. It still breaks my heart. Aging sucks.

I just kept telling myself, "One foot in front of the other." Keep moving forward, doing the next thing. Doing the right thing as best you know it. And my boss kept telling me, "Don't engage." When my Dad yelled, I listened. I hugged. I took it. Because he was ultimately losing so much more than I. He needed to get angry, and sad, and frustrated. Oldsters lose so much: health is failing, friends and loved ones are dying, and they are losing control. Plus they see the end of their own life only too clearly. This was not about me at all, even though I am essentially losing my Dad. It's about him. It's ALL about him. Once he could listen, but he's not capable of that much anymore. All I can do is love him. Cry at night for my own losses and his, but whatever else, don't argue. (It's useless to argue with someone with dementia anyway.)

Mantra: Don't engage, don't engage, don't engage.

Is It Alzheimers? Step One

Is it Alzheimer's? That's the looming first question for Childster and Oldster alike. At least, it was for me. The thing that scared me too much to really focus on. I procrastinated on the research. I soooooo didn't want it to be Alzheimer's. And it wasn't. But it was just as bad.

My Dad's girlfriend told me to come and stay for a week to ten days. She told me that when I came for 2 or 3 days, my Dad "rallied" and I wasn't really seeing the whole picture. Boy was she right. He is a great rallier. But he couldn't keep it up for a week. It was a hard week, watching him in slow motion, repeating stories, forgetting sentences half way through, but happy to see me.

I am a researcher; that is, I've done a lot of strategic and market research. Basically, I'm a Googler extraordinaire. So once I got up my courage, of course I relied on these half-baked skills to help in my approach.

I started by writing down all of my Dad's symptoms, everything that seemed a little "off." I kept the list and added to it over the course of that week. Everything from eating in slow motion to not being able to turn as he walked to losing his train of thought mid-sentence. I referred back to this list often and was glad I had it. It turned out to be extremely useful in researching his symptoms.

Yes or No Is Usually No

As you embark upon this journey, one helpful hint I heard is to never ask your parent a yes or no question, unless you are looking for "no." People with even slight dementia will often answer "no" if they don't understand the question or the repercussions of their answer; for instance, if they suspect that you have alterior motives.

So the best way to ask a question is to make it a suggestion or a foregone conclusion. The example I read was to not ask, "Do you want to go for a walk?" (A yes or no question). Instead, suggest "Let's go for a walk." You are more likely to get a yes to the latter question. And if they put you off, say okay and ask again 4 hours later.

They Aren't Children, Or Are They?

When I first starting researching issues facing childsters (my own term I've made up as its much faster than writing "adult children taking care of the their parents...I think there's another term out there, but hey, it wouldn't work for my blog title, now would it?), one of the things I read over and over was that you should not treat your parents as children. And I certainly agreed. But as I went through the process, I found myself protecting my Dad and caring for my Dad like he was my child.

Obviously, he is not a child, and he deserves great respect and love and consideration. But it often feels like I'm dealing with a child, and it's not an irrelevant comparison. Whatever he does, I try to be patient and loving and protective. He makes decisions very much like a child, is easily swayed, and emotionally based as his logical thinking is pretty much gone (not his old personality at all).

One of the things that was hardest for me was the "Control" issue, with a capital C thank you very much. I've spent half my adult life trying not to be controlling. When I took control of my Dad's life, it was full tilt. There was no halfway, as he is a very controlling person himself. I struggled mightily with how to help him feel in control of his life, how to protect him without taking away all his control. It doesn't help being 2,000 miles away. I wonder if they tell you not to treat your parents as children so you will not become too controlling?

I'm inviting my Mom into this Blog to get her thinking on this, as I'm sure it will hit home and she'll have a few choice words on the matter.

Hindsight Isn't Always 20/20

Taking over a parent's life is something to be avoided at all costs. Life ends as we know it. It may be preferable to die young.

But let's not sugar coat it. We have entered a phase of life that is detrimental to our physical and emotional health. We may find ourselves with a cantankerous, stubborn, smart, loving and yet oh-so-pissed-off parent with dementia that needs to make major life changes. One who will go to the mat to not make even the most minor changes, never mind the big ones.

We have to take it. They may swear, forswear, disinherit, beg, plead, cry, yell, punch, threaten, jump out of moving vehicles, write bad checks, refuse to eat, walk 18 miles barefoot in the snow, and otherwise break our hearts into a million tiny pieces. But we will take it. We don't engage, we just hug. Only later, in the deepest dark of the night, are we stripped of our strength, our bravado, our reckless belief that we can figure out this mess and do the right thing. And after months of sleeplessness, then we finally realize how blessed an early death could have been. Our own.

Yes, I know, you could never wish for such a thing. And you never would, ever. Neither would I. That is my curse. A Dudley Do-Right from the git go. But I must confess, Dudley may have done wrong a few times. But always with the best of intentions. I still wonder if there was a better way. This blog is about dealing with the complex feelings of guilt and fear and remorse and loss, and learning to let go, laugh, and live our lives as imperfect but loving childsters--adult children of oldsters.