ROFL at Dementia…or Die Crying

My mom ended up with dementia as a result of radiation for brain cancer. She had the tumor surgically removed, but they wanted to zap the surrounding area a bit to make sure they nuked everything that might cause trouble later.  Seems nuking a brain doesn’t always go without issues.  I was 1200+ miles away, but saw her nearly every Christmas when she and dad came to visit me en route to their winters away from the Midwest. Sometimes the changes were very noticeable.  Mostly, I heard things over the phone; we talked often.

I remember a brief period of time when she knew she was starting to decline. That was terribly sad. She’d tell me “I don’t remember things as well anymore”.  She started labeling things, and even wrote her own obituary; she knew she wouldn’t be able  for much longer. It was heartbreaking. I’d been an RN for many years at that point.  I knew what was coming.  It didn’t really take that long for her memory to be unreliable for current things. She still remembered the past fairly well, so we talked about that.  I’d ask her questions about recent events now and then to assess where she was in the progression of the dementia. If I got too inquisitive, she’d ask to talk to the dog. Literally.  SO, I’d put the phone to the dog’s ear, and get the dog to ‘talk’. That would make mom happy.  She loved her ‘granddogger’.  She thought it was a riot when Hannah (dog) would howl if I said “woof”, or “bow wow”.  That was the cue for showtime. Mom loved that. And it got her out of answering my questions.  The dog was ‘safe’.

Mom went through the usual memory issues, and then her judgement got weird. Normally, before dementia, mom was very polite and had great manners- sometimes even a bit prissy. Not with dementia !  She was generally agreeable, but it was better not to tell her ahead of time if she was going to get out of the car on outings. For a long time, she preferred to sit in the car and wait for dad- doing word find games or reading when she still was able.  But then the dislike for doing anything unfamiliar started. On one Christmas trip to see me, we went to a nice little town known for their antiques, and a little town diner that had great bread pudding (I’m told; I hate the stuff).  SO, Dad and I got her into the wheelchair and got ready to move the chair up the three steps into the restaurant. Other patrons were immediately helping with the door, and before she could get too bent out of shape, she was sitting at the table.  If we would have told her ahead of time, there would have been all sorts of wailing and gnashing of teeth.

She was wheelchair bound except for a few steps, but would order the buffet at a restaurant… like the buffet fairy was going to whisk it tableside for her.  Dad went and got her what he figured she’d like, as many times as she wanted (she wasn’t a big eater, so it wasn’t more than one refill- usually of something starchy).  He and I, with our stable feet, would order the sit-down stuff.  But, mom would be happy.  He did all he could to make every day something that was as pleasant, and pleasing, as possible.  Her last years were one long, huge gift from him.  There weren’t many days when he didn’t at least get her out for a ride, even if just to some random place, and home again.  He didn’t let her just ‘sit’.

Dad took most things in stride. He’d been through a lot with mom, and figured they’d just get through whatever came along.  He called me one day in a moderate panic.  “I don’t know what I’m going to do with your mother”.  Uh oh. She was “MY mother”…. that couldn’t be good.  I asked him what was going on.  Seems that whenever a telemarketer called, she’d say “yes” to whatever they were peddling.  Anything.  Stuff started showing up on the doorstep that was baffling him.  When he asked her, somehow he got an answer that involved some “nice person on the phone”.  Oy.  I suggested unplugging the phone when he ran to the store, or some other brief outing. She couldn’t use the phone any longer, but he didn’t like that idea; he wanted to be able to call her. She wasn’t one to get up on her own, and wasn’t able to wander, so he could get out for up to a couple of hours if he popped in a movie, and helped her to the bathroom before he left; it was their system, and it worked for them.  Anyway, he ended up getting a Tele-Zapper, and calling the various vendors of the stuff that showed up; they were understanding and cancelled any subscriptions, and accepted returns of any items.

And don’t call her during a movie.  If dad had put a movie in for her before stepping out for a bit, and mom got a call, she’d say “I’m watching a movie. I can’t talk.”   Click.  Dial tone.  Manners?  Zippo.  It would be a movie she’d seen about a bazillion times, but it was all semi-new to her.  She especially liked “The Cutting Edge” skating movie.  I used to skate, and she took me to lessons.  The town they lived in was a big winter sports area, and skating had always been part of the local culture.  She used to sew costumes for local skaters when I was little.  She made my little skating skirts when I was four years old.

Thanksgiving often occurred repeatedly in June or July.  Instead of trying to force her memory into reality, Dad went looking for pumpkin pie.  It might take  3-4 stores, but he’d get it, and make her happy.  She’d be clueless a couple of hours later at most, but he didn’t ever want to be ‘mean’ to her.

One trip to some 5-star resort in the Phoenix area got a bit awkward.  After finishing lunch, dad went to wash his hands. When he got back to the table, the head waiter and some guy with a tray of chocolate and bottle of champagne were talking to mom.  What now? The head  guy then congratulated dad on his anniversary (this was in February; their anniversary was in August).  They left the chocolate and champagne (which mom couldn’t have with her seizure medication), and left.  He called me and asked me what he should have done; he didn’t want to embarrass mom.  I told him just don’t show up again at that place for another year. They’d already left the stuff at the table; it wasn’t usable for anyone else at that point.

When the seizures started, dad was dumbfounded at the weird behavior mom displayed. One night he called me all upset. “She’s speaking in tongues again” he half hollered.  Huh?  We’d all gone to the same church since I was a baby, and while they believed in tongues, it wasn’t a holy roller tongue-speaking crowd. Clapping was considered a rousing expression of appreciation.  (Swedes, ya know!). And ‘again’ meant she’d done this before.   He put her on the phone.  She was making NO sense.  He got back on the phone and said she was also taking her clothes off.  MY MOM?  Stripping for the heck of it?  Something was wrong.  I told him I thought she was having temporal lobe or frontal lobe seizures, and he needed to take her to the ER.  I didn’t know how long it would last, and with her history of the right frontal brain tumor, this needed to be checked.  So he got some friends to help load her in the car, and off they went. She was admitted, and started on seizure medication.  The ‘religious’ outbursts stopped.

The dementia progressed, and every Christmas I’d see the latest level of decline.  She could still talk, but her memory was shot.  She transposed past familiar places into the city we would be passing through.  “Where is the Talcott building?”.  Well, gee mom, about 1200 miles northeast of here…. but I couldn’t just say that; she still had feelings, and now and then would feel badly if she was ‘wrong’.

I had decided to move back home to help dad take care of her. He was so adamant about not putting her in a nursing home, even though she was a full-time job.  He wanted to be the one taking care of her.  I didn’t want him to be alone in that.  One of the last things I remember about her  was him calling me to come and “look at your mother”.  When I went upstairs and went to the bedroom where she was sitting in her favorite chair, I had to keep myself from cracking up.  She had put her wig on backwards, and it looked like a fuzzy ski jump hanging over her nose.  I asked her if she was coming or going. She said “It’s really on backwards? He’s not messing with me?”.  I assured her it was indeed on backwards.  She fixed it. Sort of.

They went on their planned 3-month trip to the Phoenix area for the winter. I was staying in their house as I got used to being back in my hometown (a big adjustment from the friendly South).  I had no idea what was going to transpire towards the end of that three month trip.  That’s for another post.  But I will always remember that dealing with dementia is a very difficult process.  Without some humor, it would be soul consuming.

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To Seize, or Not To Seize…That is the Question.

I went to a routine neurology appointment today.  One of the reasons I’m on disability is seizures that aren’t adequately controlled by medications.  At my last place of employment, I was shipped out by ambulance about 10-12 times over the final six weeks I worked there because I’d either had a seizure and fell over, or the other disorder (dysautonomia) had rendered me useless.  I tried going back many months later, after another medication was added, and it didn’t work well enough.  I was considered useless as a registered nurse. That hurt. I still keep my license active, and do my required CEUs (education units) to keep my license…I worked for it, I worked with it, and it’s still mine.

Anyway, my neurologist asked about trying some other medications to see if the seizures could be stopped any better. The only problem is that I’d already tried every one she suggested, except for the one with a side effect of headaches. That is already a major quality of life issue, so she decided to not rock the boat. For now, things are as good as they get.  I know I’ve had a seizure when I wake up with the side of my tongue or inner cheek chewed up and a feeling that I’ve been trampled by elephants.

I’d had seizures from the time I was a teenager, more than likely after a couple of bad head injuries. The first bad fall was in eighth grade PE – the fall of 1976 (there have been many concussions over the years, including in the past decade) We were doing the gymnastics unit, and I was on the uneven parallel bars, getting ready to let go of the top bar, swing under the lower bar (my legs were wrapped around it), and move my legs in such a way that I let go and landed on my feet. A penny drop.  All I remember was hanging on to the top bar, and then being on my back on the mat, with some ‘kind soul’ asking me if I’d get off the mat so she could go…I was barely able to focus. That got me a trip to the nurses’ office (a place I ended up fairly often), and was watched for a while.  She called my dad, and after some discussion about me being alert and aware of my surroundings, it was decided that it wouldn’t kill me to finish the day at school.  I survived. I went into shock later that night at a girls church youth group meeting. The leader of that group still remembers that night 36 years later.

The second bad fall was in the spring of 1977… still eighth grade, but that spring. I’d fallen during figure skating practice before an ice show. There is still some vague memory of hearing a crack (and the ice was fine), and then three of the ice patrol guys who keep everyone skating in the right direction standing over me.  No memory of falling or actual impact. They hauled me off to the back room of the office, where my coach stayed with me. I refused to give her or the other ice rink staff my grandparents’ phone number. I was staying with them since my parents were vacationing in Brazil.  I didn’t want to worry grandma. SO, as best they could they watched me, and called for any doctors who were at the rink to come back and check me out; one did.  They also kept an eye on me during that weekend of many shows.  I’d be whisked off the ice after my group skated, and bundled up in my coach’s long fur coat.  When my parents returned from Brazil, the rink people called them to let them know; I don’t remember if I brought it up or not.  I tended to avoid discussing anything that didn’t have a ‘positive’ tone to it when it came to talking to my mom.  Being sick wasn’t tolerated well.

I don’t know how long it was after that when the seizures started, but by the middle of my freshmen year in high school, I was having some odd ‘episodes’ and bad headaches (can be the end result of seizures).  Many people thought I was just being difficult or dramatic, but I was scared, confused, and very misunderstood.  Mom and dad did the right things by taking me to a neurologist for a CT scan (the ultimate diagnostic test of the times) and EEG.  Those came out OK, and nobody told my parents OR me that many people with normal EEGs have documented seizures. The focus (origin) of the seizures is just too deep in the brain for the superficial electrodes to pick up. Or, the brain waves are normal when they aren’t seizing.  SO I was blamed for being a pain in the butt whenever I had anything happen that nobody could explain.   I learned to shut up.  Unfortunately, these episodes happened ‘whenever’.  It didn’t matter if I was alone, with a group of my classmates or church youth group, or standing on the roof howling at the moon.  Well, OK, I never did that last one.

When I finally graduated from nursing school, and moved to Texas in late 1985, one of the first things I did when I got my own health insurance was to find someone who would hear me out, and give me some answers. If it ended up I was a nut case, at least I would have been heard.  In the end, that’s what most of us want in any unpleasant situation.  The doc I was referred to had another type of EEG done, and a CT scan  (MRIs were just a year away from being available).  He saw something in both my EEG results, and my demeanor.  I wasn’t bragging about these episodes, or wanting attention. He never saw one.  He did see several episodes of abnormalities in a 24-hour EEG that didn’t show up on the 30 minute ones. He felt quite confident, with those results, and my lack of specific knowledge about what happened during the episodes, that I have temporal lobe epilepsy.  He believed me ‘enough’ to dig a bit deeper, and listen a bit harder to find an answer.

So the beginning of trying different medications started. Over many years I was on various drugs, and  did  fairly well until the mid-90s. The dysautonomia also was an issue by then, and complicated things.  But one neurologist in Kerrville, TX (*RIP Dr. Patricia Van Reet*) found that Neurontin was a medication that could help both. It bought me 8 years that I could still work, which was more of a gift than I could imagine at the time.  She saw something that was in need of treatment, and sent me for some ‘electrophysiology’ studies (fancy EKG/cardiac assessments), which confirmed the dysautonomia, and told her how to proceed with the treatment.  I was beginning to have some serious work issues, as I’d keel over fairly easily.

Since being on disability, I’ve had regular EEGs, and periodic MRIs.  It seems the structure of my brain is OK, aside from some mild  old stroke scarring.  I was sent to a major university hospital neurology center to see a doctor who specializes in EEG readings (Gawd, I can’t imagine looking at squiggly lines all day). I had a 5-day video EEG, that had me wired up for sound and action from Monday-Friday to find out if there was a chunk of my brain that could be lopped off to stop the seizures. Seems the place were my seizures start is too close to places that would leave me even more handicapped if they were removed, so that idea was shelved. No brain surgery.  While I was relieved that nobody would be rooting around in my brain, I was bummed that there wasn’t a surgical fix; surgery generally is done to take care of something once and for all.  Not this time.  My speech and memory centers were very close, and it could also affect my right side motor functioning.  I’d be a mute hemiplegic…thanks anyway.

There were some very valuable things that I’ve learned through all of this.  First- listen to the patient. They know what they experience better than anybody else on the planet. Just because I can’t see it doesn’t mean it doesn’t exist.  Second- not all things that look dramatic are for the purposes of being dramatic.  I had no clue what was going on, other than some vague ‘something isn’t right’ feeling before I actually lost nearly all awareness of the seizure. I’d know something was wrong when I’d wake up feeling like I’d had heavy equipment driven over my muscles, and a car parked on my head.  I didn’t twitch like the TV seizures, so many people thought I was a headcase.  That hurt for a long time.  Third- hospital ERs really hate seizure patients. I had some horrendous treatment after being shipped from work, and later when on disability and following my doctor’s parameters for when to go to the ER. ERs like to fix people,  I wasn’t ‘fixable’, so I was considered a ‘wasted bed’ (actual words told to my face), and noncompliant with my treatment, when in fact I had regular appointments, and any drug levels that could be checked were always therapeutic (good). All the ER (one particularly horrible one) saw was ‘frequent flyer’.  I’m embarrassed that those nurses belong to the same profession I did.

You don’t have to know what something is for something to exist.  The person with the health issue needs to have a full work-up, and if that includes a psych consult, then so be it- but don’t blow them off because you don’t get it or see it, or understand it (I could write for days about that with the dysautonomia).  Fight for them to get an answer.  Not everyone fits into the list in the books about what symptoms ‘should’ be there.  And the books aren’t all-inclusive. Everybody is different, and to blow someone off to live a less-than optimal life is inexcusable. Be an advocate !  And let the person know you want them to get answers, whether you believe them or not.  It’s not your place to diagnose- it is your place to support the best outcome for your patients.   You never know when you could be one needing someone to stand in your corner. It sure took me by surprise.