Getting our loved ones to stop driving is a very difficult challenge. In my experience I was not confident that the doctors evaluating my husband knew and saw enough about him and his cognitive difficulties to take a firm position on whether he should drive or not. Heck his Neurosurgeon said that not letting him use a chainsaw was a marital issue! So on the driving I knew I couldn’t convince my Miata loving, former autocross champ to give up driving even using my expert powers of feminine guile. Plus I was worried, that he could possibly pass a DMV test given in our right to kill state vs one given in a state like California where doctors are legally required to report patients they deem dangerous to DMV and DMV does something. I had to trick the neurosurgeon into restricting his driving by quoting the most recent hospital discharge instructions. Once entangled he wrote a referral for a driving skills assessment that he had no knowledge even existed in his own hospital.
I was fortunate to find a driver rehabilitation specialist (a credentialed subspecialty of occupational therapy (OT)) who administers all sorts of standardized tests to assess cognitive abilities, reaction time, visual acuity in various lighting conditions, multiple distraction integration, etc. in the office setting. If he passed the office tests then she would take him on the road in a dual controlled car and assess his driving skills. It never got that far. He failed the office tests. The OT said he can try again in the future but I doubt that will ever happen.
It was not an easy experience to watch him take the tests. There were times I just wanted to cry and say, “stop already.” When he was told that he failed, he stood up, started yelling at me about how happy I must feel then stormed out of the office and left the building. Eventually he calmed down and no longer directs his frustration about not being allowed to drive towards me.
This may sound harsh but I feel that if my sweetie could drive on roads without other drivers or pedestrians I would gladly give him the keys and let him drive, crash, etc. but I don’t want to live with the memory of him harming or killing someone when I knew he was unsafe to drive.
Over time, he has accepted the reality. At least twice a week he says, “when I drive again…” More recently though he has expressed a desire to take the test over. He seems to link the end of chemotherapy with the restoration of approval to drive. He asked me to contact the OT but instead I said, “here’s her number so you can call and reschedule.” I notified the OT that my sweetie may call. It took about two weeks for him to call. The OT gave him some websites to practice cognitive skills before retesting. He went to the websites but had trouble accessing the exercises and asked me to set it up. Essentially I said that in order to drive again then it is important to do all the expected tasks by himself.
Here’s a link to the driver rehab specialist website that explains the credential and how to find one in your area.
Dr. Salomon Hakim explains Normal Pressure Hydrochephalus (NPH)
NPH is such a rarely diagnosed dementia disorder that no large population studies have been done. It is estimated that over 1/3 of American physicians have never even heard of NPH, a disorder that can potentially be reversed or at least diminished and slowed if treated appropriately.
The disease was discovered 50 years ago (1964) by a brilliant and caring researcher, Salomon Hakim, MD, PhD., in Colombia, SA. Unlike other brain diseases there is a dearth of studies that follow NPH patients, treated or untreated. NPHers exhibit three often misdiagnosed symptoms that continue to diminish quality of life (cognitive impairment, incontinence, balance and gait problems). Brain scans show dilated ventricles filled with excessive cerebrospinal fluid (CSF). My feeling is that if you are fortunate NOT to be misdiagnosed then you are one NPHer who has the ability to direct and decide what your immediate and long term future may be.
My sweetie could have been CT scanned diagnosed in 2005 or at least told to get scans on some regular basis, to look out for symptoms, etc. but it took a year of intermittent urine incontinence wrongly attributed to BPH, some bowel incontinence attributed to constipation and then after several falls the traumatic brain injury in 2012 that scans done showed the same enlarged ventricles as 2005 scan. Cognitive stuff also was happening to the point of making me think I no longer want to be in this marriage but I stayed, he fell, rehabbed for months, told he would never work or walk but beat the odds and does have a good quality of life but will never drive his miata, will now watch someone else use his chainsaw to clean up the 8 trees the beavers destroyed last year and probably not walk his beloved dog Chaos again. He was only 67.
Even with the defective shunt, endoscopic third ventriculostomy (ETV) and a subacute subdural hematoma that shifted the midline of his brain 14 mm exactly four weeks after ETV surgery, I would not hesitate to make the same medical decisions as I have. It’s my project to keep him with me for as long as possible. There are no guarantees that shunt will work or that surgical complications won’t happen but not doing it will make your caregiver want to take you to the woodshed eventually and likely reduce caregivers life expectancy since that’s what NPH, Alzheimers and other dementias do to those who have to change adult diapers, clean the bedding too frequently, not be able to leave untreated NPHer alone for a minute, etc.
You will find out that there is really no formula for the doc to follow when first setting your shunt in op room, or to turn shunt up or down if symptoms recur. Doesn’t give us the warm and fuzzies buts that’s where this disease is. So my advice while you have the time, brain power and great fortune to have been diagnosed is:
Find a neurosurgeon that YOU and family can work with. We had no choice because of emergency situation. Ours was a skilled surgeon but Fuggedabout his bedside manner and awareness of his patients predicament. Don’t stop until you find one who treats you like his/her own self;
Before surgery find out how often your neurosurgeon wants to follow you. Ours said come back in a year and our university so called top notch NS had patients return as often as every 2 weeks for office evaluation. Somewhere in between is the appropriate frequency but it’s baffling that one says 14 days while other says 365!!!!
Don’t leave hospital without prescription for physical therapy. Even if you graduate the day you start it’s better to be evaluated once discharged than by the hospital physical therapists who’s primary goal is to get you to a level that meets discharge criteria. For my sweetie after serious complication he was discharged after walking 20 steps back and forth in the hallway!! The outpatient PT was good for his physical as well as cognitive well being and not to forget his morale since his PTs were all pretty young women gushing over every teeny improvement and even misstep. So spend time identifying a good PT facility that knows neuro rehabilitation because it’s not the same as broken toe PT.
Any upset of your body’s status quo can aggravate mild symptoms and even make long gone symptoms come back for a visit. UTIs are particularly troublesome because one can have them and not know it. That’s why the dementia folks call them silent UTIs. So keep fresh UTI test strips at home and tell family members that if they observe any “odd” behaviors then check for UTI, if positive or negative at home and still behaving off after a day get into your PCP for evaluation.
Educate your PCP if you don’t have one of the very few who even knows what NPH stands for. Ours admitted he had no idea so we talked and stuck with him because he always responds to my calls and fits us in that or the next day. On one occasion he actually asked what should he do and I said call the neurosurgeon. He stayed late to make sure he got the call back and arranged for a lumbar puncture within 2 hours at local radiology facility. He even came over to make sure we got set up okay. Turned out neurosurgeon should have said get a scan which I had thought would have been requested. Instead I ceded to neurosurgeon and 2 days later I rushed my sweetie to the ER for an emergency brain surgery!!
Get your docs to talk about you before and after surgery. I can’t tell you how horrible it feels when neurosurgeon says that’s for the other doc or good luck with that issue. No I just deal with your brain. But if you are anything like us your brain is connected to your toe nail eventually.
NOT TO TREAT – WHAT WILL HAPPEN?
Most of the NPH research studies that have been done are on extremely small numbers of patients so results are typically not statistically significant and the focus is on shunt efficacy and complications. The progression of a shunted as well as non-shunted NPHer is simply undocumented in the medical literature. Caregivers report that the whatever symptoms show up just get worse and worse. If you find information on the progression of untreated NPH please send it over.
The Hydrocephalus Association has greatly expanded its links to research and other articles about NPH since my journey between 2012-2016. The links on this page were the ones that helped me the most. I am no longer a caregiver but occasionally update this page. Since updates are not frequent the Hydrocephalus Association is a good resource for current NPH information.
“A recently published study from researchers at the University of Gothenburg attempts to shed light on the long term outcomes of untreated iNPH by examining mortality rates, risk of dementia, and symptom progression in individuals with ventricular enlargement. The study was led by Daniel Jaraj, MD, PhD, a member of the HA Network for Discovery Science.
The research group obtained baseline information on the elderly population of Gothenburg, Sweden from 1986-2000. The study included 1,235 participants, all aged 75 or older. No patients with treated iNPH were included. Participants were divided into four groups based on radiological and clinical indications:
Non-iNPH: consisting of participants who had no sign of ventricular enlargement upon computed tomography (CT) scan and did not exhibit any of the core clinical symptoms (cognitive impairment, gait disturbance, and urinary incontinence).
Asymptomatic Hydrocephalic Ventricular enlargement (HVe): consisting of participants who showed ventricular enlargement but did not exhibit the core clinical symptoms.
Possible iNPH: consisting of participants who showed ventricular enlargement and exhibited at least one of the three core clinical symptoms. Probable iNPH: consisting of participants who showed ventricular enlargement and exhibited gait disturbance as well as either cognitive impairment or urinary incontinence.
Five-year mortality rates were similar in non-iNPH patients, asymptomatic HVe patients, and possible iNPH patients. However, probable iNPH patients had a significantly higher five-year mortality rate of 87.5% (Table 1).
Dementia developed in 20.6% of non-iNPH patients while 68% of patients who showed radiological indicators of iNPH (symptomatic HVe, possible iNPH, and probable iNPH) either had dementia at baseline or developed dementia during the study period.
Furthermore, almost all participants with enlarged ventricles showed some sign of symptom progression, and nearly 50% of asymptomatic HVe and possible iNPH patients developed probable iNPH during the time of the study period.
Thisstudy was unable to directlycompare outcomes of untreated iNPH with treated iNPH. However, the authors hypothesize that radiological indicators (e.g. enlarged ventricles) develop before clinical symptoms (Figure 1). Surgical or other interventions at this early time-point may lead to better outcomes for iNPH patients.”
There are no established standardized protocols for diagnosing, treating and following suspected and/or confirmed NPH patients. If one is fortunate to have a physician who knows about NPH and who pursues or rules out a diagnosis, treats and monitors, most likely that physician is approaching it differently from any other physician. Every patient seems to follow a very different path. Recently, Relkin and others, assembled guidelines for NPH diagnosis and treatment. Unfortunately they are not recognized by any national or internationl medical authority but they are a very useful tool for patients, caregivers and advocates to use to ensure that the best and most thorough approach is followed. I implore all NPHers to give copies of these documents to all their providers so the word can get out that NPH can be assessed methodically.
I knew a few days ago something was brewing but hoped he would snap out of it with extra sleep and nutritious meals but Wednesday and Thursday night urine incontinence in bed started the screaming in my head to do something. Down here the doctors offices close at midday on Friday. Also knew his PCP was on vacation this week. So had to get something ordered before noon on the day that I had my long delayed PCP appt. at 10. At 8 AM, did a uti test strip; leukocyte pad somewhat discolored after I figured out the proper orientation of the strip and chart; called walk in LabCorp to find out if possible to drop off urine sample but NO need doctor’s orders; called his PCP office asking if they could just fax an order to LabCorp but NO he had to be seen by substitute doctor who had openings only at 10:15 and 11:15; his impatience was mounting because he wanted to get going to “work”; called my PCP office before 9 AM, service answered, I’ll call after 9; decided to reserve 10:15 appt at his PCP which is 5 miles from the house; it’s 8:50 and I ask how about we stay home until appt instead of driving downtown 20 miles now and then driving back up within 10 minutes but NO growl, complain, before he could say this is why he needs to drive again, I said, no problem I will do whatever it takes; drop him off at 9:22 and leave to get coffee and return to pick up at 9:49; called my PCP 5 more times after 9 still got service; finally got thru and asked if doc could see my husband instead of me at 10 but NO doc doesn’t see walk ins and will have to transfer his care; cancel my appt; drive 15 miles back up road and he can’t pee; drinks 3 cups of water, show him suggestive photos in people mag and off he goes to bathroom but NO pee for 10 minutes; we leave, take sterile cup to fill later at work, give me orders for STAT urinalysis, deliver to lab expecting a major eruption from hubs at any moment in doc office but NO calm as clam and even apologetic for not being able to pee and no nastiness about taking him to doc; on highway not 5 minutes later …I decelerate from 80 to 0 mph in 5 seconds, drive over the rumble strip, cover him with a towel but NO nothing comes out; 5 minutes later on city street commotion starts again, pull over, pull out, get some in cup … while a very curious person walks by looking into the car while I drape a towel over the scene of the crime; put everything back in its place merge back onto street and drop him off at work; one of his students leaving to get lunch wanting to know how appt went while I’m waving my hand behind husband head to alert kid to shut up and keep walking but NO he stands in front of door while hubs gets out … drive away stopping student to ask if he noticed any changes over past few days but NO everything seems fine to him; head over to lab and indicate I have a STAT sample but NO docs office didn’t write stat so frantically called to get STAT fax STAT before 12 when doc office closes; STAT STAT fax faxed but NO receptionist for 15 minutes so I open and close front door several times to set off dinger but NO one shows up; finally she returns and ready to hand off sample but NO I have to place it in special transfer sink so pathogen protected person can process; stop at restroom so I can pee!!! and really want to drive 20 miles home, sprawl out on couch and do coma cuddle time with Chaos but NO I’m too jittery to drive, forgot to take morning meds that require me to consume 500 calories, changed lanes earlier and don’t remember how, want to burst out bawling, screaming, kicking but NO quietly park myself at bohemian college cafe until time to pick hubs up at 5. STAT results take 5 hours, lab hopefully contact on-call doc to contact me but NO this time it won’t be UTI but something needing rush to ER but NO won’t know until middle of the night …
I know something is wrong and I think my sweetie knows it too because he didn’t blow up once at doc office or after. Just uncharacteristically apologetic even telling student he might have a problem. Unheard of…
I would have to be involuntarily committed if this support group didn’t exist.
Ruling out medical causes for sudden personality or physical changes is usually my first focus. The fog I’m in and the pumping adrenaline turns me into an emotional Dr. Spock as I try to rule out an incontinent event, dehydration, toothache, fever, clumsy act, UTI, etc.
UTI assessment poses particular diplomatic maneuverings because it generates a Pavlovian scene. I keep a stash of UTI home test strips at the ready to avoid making him more annoyed by suggesting a trip to the primary care. As soon as he sees me coming with the strips, he gets defensive, rightly thinking I’m thinking something is wrong with him!! And of course if some bacteria got into his urinary tract it’s my fault. I’m just venting…
Oh but a neurologist saying not to do things to upset our loved ones with dementia causes steam to burst out of my eyeballs. Sure we are doing everything in our powers to annoy them and get them agitated. It’s okay for the docs to annoy us with their insensitive platitudes. My pre-dementia agitated sweetie would say things like, “You want me to get mad!” I would respond, “it’s not in my best interest to do that,” “why would I want you flipping out,” “I feel so happy when you’re mad as a hatter.” Well not all those every time or else he could justify an outburst. I keep returning to my mantra, PHYSICIAN, HEAR THYSELF! No doubt there are some great docs out there and frankly now that I have become immersed in the medical industrial complex there is no way I could ever manage that profession BUT something’s got to give soon. They have to change their paradigm when it comes to treating dementia patients AND their caregivers. We are just as victimized by the disease. Everyone says caregiver life expectancy is shortened because of our journey. So I’m really sorry for railing against doctor’s guidance and wisdom. I know how hard it is to find a doctor that’s convenient, has available appointments, has been referred, etc. so firing a provider is most times not practical but there has to be a cure for dementia, not only to stop our loved ones from suffering but to give us some peace.
Just had a thought after picking up Chaos’ poop – seems I am most creative when dealing with poop – anyway how about a program called DOC FOR DEMENTIA DINNER or TRIPLE D. To be board certified they have to eat “x” number of dinners at their patients homes. Those docs that bring meals get extra points toward their next recertification. Whattdya think?