brains

i know a lot about the human body. how it works, what it needs.the complex systems we are made of really is an amazing thing.

while i completely understand the lungs, the heart and the uterus, the brain is mysterious to me.  it is the seat of who we are. there are areas in the brian dedicated to speech, to motor control,  to emotions, to short and long term memory. areas that drive our personalities. chemically and structurally they are similar from person to person and yet here we are unique individuals.

when something  happens to your brain, it changes who you are.  the rise of traumatic brain injury due to war injuries has raised awareness of what an impact tbi can have on your personality. concussions, once thought to be merely a bump in the road for athletes are now taken pretty seriously in most circles.

lewy body changes your brain, and hence your personality. while you are still you, you are a different you.

lewy has changed alan in ways that are very apparent to me. in the old days, i remember him as being very engaged, very active.  he had a legendary roving eye.  as an architect he was good at knowing how things worked and figuring things out.

yesterday we had our annual gingerbread party.   the kids invite a few friends and we decorate houses with elaborate designs glued together with frosting. gumdrops, m &m's , candy canes, necco wafers, mini shredded wheat squares, licorice and pretzels all become construction material.  over the years the designs have become very sophisticated.

alan came, as he has in past years, but this year was different. he must have been having a very lewy day because he was quiet and unengaged. more interested in eating the candy than in watching or helping. he needed help figuring out how to take a photo on his iphone.  pre lewy he would not have needed help .

lewy has made him a different version of himself.  not exactly like meeting a new person, but he is a different person. his brain has changed. and while somedays he is more like the old alan than not, somedays he is a mysterious new version of himself.

rivah

i've had a flood of thoughts and emotions since first hearing the words "lewy body disease". i've learned a lot.  the reality of the illness makes me want to run.  but by nature and training i am a pragmatist. i know there is no running from this,  so i continue to try and navigate the reality.

the diagnosis shines the light on  life's frailty and unpredictable nature. i've always been one who was good at living in the moment with an eye on my direction.  i'm not putting off vacations and dreams for retirement...

finding out that alan has lewy body unsettled me, unmoored me for a moment. his parents lived to their 90's , pretty much sharp as tacks. i assumed that he would do the same. understanding the diagnosis, i realize that the 20 year path i thought i was on has changed. its a different path of undetermined length, but certainly shorter. the difficult relationship that i have with his wife is magnified but its shape and prickles are the same, just bigger.

in a strange way i am peaceful about it. i'm glad i know, and that the changes in him have a name. i understand and can prepare that some days will be better than others, know that improvement is unlikely but that homeostasis is possible.

its hard to face the changes. the last few times i have seen him, he isn't the alan i remember. he looks old. he is no longer dapper alan. he's usually wearing sweats and there is no sign of a recent shower or the cologne that i remember. his face shows a hint of the parkinsons mask, more obvious in photos but visible to the eye as well.

yesterday at lunch he told me that his family practice doctor says he thinks the diagnosis of lewy body is not correct.  it was hard to see the glimmer of hope in his eyes, knowing the fp is full of shit. feeding into the denial of his wife and of his own denial.

to understand my response to this its important to know that i am not a fan of the family practice doc. i've worked with many over the years and to a person they  know a little about a lot, and generally do not want to admit when they are out of their league.  i tried to explain that the neurologist is the expert on neurological issues and that only she could change a diagnosis.

since i  did my own research on lewy body, saw his chart with the diagnosis,  talked with the neurologist and her team caring for him at good sam,   i know the diagnosis is correct. everything falls into place with lewy body at the head.  does it matter what they call it? i think so.  having a correct diagnosis is key to having a plan in place that will maximize quality of life.

but in truth, if he and his wife choose to float down the river of denial, it doesn't matter. since there is no real treatment, not believing the diagnosis is not going to change  the reality of the situation.  it's not going to change my reaction to the situation and abiliy to speak the truth  as i see it.

Changing spots

They say that Leopards don't change their spots.

That is certainly true for my Dad's wife.   After her initial push back to my offer to help with Alan, I decided that my straight-forward-pragmatic-nurse approach did not fit with her denial.  So in attempt to soften my approach I toned down my emails, switching to just asking for updates rather than rendering input.  I  stepped back.  I want to be informed but I don't want to intrude.

After G posted a photo of him in a hospital bed on FB a few months ago, I  did say that I would like to know when big things were happening .  Except for my initial visit to Goodsam, I haven't been present for any discussions, nor have I bombarded with texts, calls or emails.

So when he was discharged from rehab and I wasn't included in the discharge conference ( as an observer only- I just want to hear the medical stuff from the medical people) , I saw very clearly that we are back to the Alan-has-no-family-or-obligations-except-to-me-and-mine way of living.  I got an email after the fact saying "Oh sorry I forgot to tell you that he was coming home, I hope you didn't go to M- rehab and find him gone" . Completely passive aggressive.  But I let it go.

Tonight I was IM'ing with A, who is in NYC in college. He said his Mom was coming for parents weekend tomorrow.  Really?   I didn't even get a courtesy notice that she was going to be gone.  And where is Alan? At her mothers.

That to my mind, is seriously fucked up.

Jeopardy

Alan is still in rehab for his knee.  The facility is beautiful and the workers are amazing.  He spends part of every day doing PT and OT.  He is getting around better with his walker.

I've visited him several times in the last week.  I admit I am always testing him- watching his responses to questions, listening for repeat phrases, seeing beyond what he is saying to ascertain what he is covering up.  He is much better than he was described to me just after surgery.

Its interesting  and confusing  for me because much of the time I've been visiting  he seems like himself.  The small slips are only there if you are looking.  It would be so easy to brush this stuff off.  He is after all, 70.  He doesn't remember names well so he dances around it.  He says things like "the girls" instead of calling them by name.  He couldn't find the word "tractor" the other day- so instead he described " a machine that a farmer uses to turn up dirt".    He asks the same question several times.  He knows what day it is but not always if it is morning or afternoon.

I am not sure what the hell to think.  This diagnosis is bad,  really bad, but am i being Chicken Little or am I being pragmatic and logical?

I know that part of the "job" of rehab is to assess where he is cognitively so they can figure out what kind of support he needs when he leaves the facility. I hope I am allowed to be part of that conversation but I have my doubts.

Alex, I'll take seeing into the future for 100 please.

Twisted or Braided?

I like stories with an interesting plot. The more intrigue, twists and turns  the better.

I'd prefer my life to be less interesting.

The last week has been a hellish roller coaster.

I've never been able to embrace my fathers current wife.  She has always treated my siblings and I as a threat.  She would prefer to believe that we don't exist , that there was no one before her and her children.  That my Dad's only obligations are to her and hers.  I am not sure if she sees the danger as a monetary threat or some other destabilizing factor.  I have never "had it out with her" but I have always stayed a cautious distance from her.  Detente.   Deflecting any invitations that might be personal, but accepting family dinner invites.  Keeping to superficial conversations, easy topics of discussion. Nothing personal. Ever.

My Dad and I spent a lot of years not talking. The root was in his wife . She'd  had had a huge fight with my sister and treated her very badly. My sister was deeply wounded. I took my sisters side, my Dad took the his wife's side and that was that.

When I came home from China  with Ruby, my Dad  reached out to me.  I wasn't sure I was ready , but with the help of Helen, my therapist,  and some time,  we worked it out.  I got to air my disappointments and griefs with him  over his absence in my childhood and we forged a new relationship.  Initially I was not interested in having a relationship with my half siblings, but eventually that changed and now I am quite fond of them.  Of their Mother, not so much.

I've always known that the braid of relationships  with this blended  family that I have created  would twist at some point,  and  true to form it has.

The diagnosis of Lewy Body is grim no matter how you look at it.  In trying to be available and supportive,  I also need to meet my own needs. I see my Dad has a devastating progressive neurological condition that he is not going to get better from.  Selfishly I want to make some time and space in my own life to spend more time with him.  I am considering taking intermittent FMLA ( which I am entitled to by law).   I offered a weekly "date" with him to go to lunch, take a drive, go to appointments or  do whatever  he needed once he is home and she declined.  She is not willing to make the space for me to do that. Of course I can see him as much as I want, but I am not welcome to arrange my schedule for something regular.

Illustrating the reason that I have never been able to fully embrace her.

I spoke to the Social Worker to fill her in on the complicated family situation.  I think she appreciated my honesty. It sounds like they have the savvy to deal with the deep veil of denial that  his wife has.  I hope that I'll be kept in the loop of information and plans.  But I'm not confident I will be.

At my visit with  Alan today in rehab he appeared to be remarkably better.  After a medication change he has no more hallucinations.  I watched him carefully for signs of covering and he is still covering his inability to remember names and some words but he did seem much better.   I hope that he will stay on the plateau  and have some good years left.  But I am pragmatic enough to know that that is likely wishful thinking.

Sinking In

I like information.  I have been known to discover something new to me, and become obsessed with learning all I can about it.   A few years ago I decided that I needed espaliered apple trees for my back yard.  I read everything I could about them. I went to the Canby Fruit Show, I combed neighborhoods looking for any kind of espaliered tree.  I now have two espaliered apple trees in my  yard that are producing apples.   They are grafted so each branch has a different variety.

Since hearing the term Lewy Body Dementia last week, I've done a lot of research and reading.  I've learned how difficult it is to diagnose and how commonly it is missed. I've learned that there is no treatment. I've learned that its course can be very fast. I've learned that it robs you of your family member.  I've learned that its more common in men than women . I've learned that symptoms  normally manifest between age 50 and 70.

At a certain point I decided I can learn no more. I had to stop reading. I had to stop researching. I know enough.

Two of my Grandparents lived well into their 80's and  a third into her 90's.  The were all sharp as tacks until the end.  I've always assumed that both of my parents would follow their parents and live until their 80's.  I assumed that they would continue to lead full lives until the end, like their parents.

As it turns out, I was wrong.

Thats not going to happen for my Dad. Yesterday was the best day he's going to have, and each day he is going to lose a little something more. The slide won't be  predictable, it won't be linear, but it's happening.  Every day he is going to be less of who he is,  less of who he was. There is not going to be a who he could be.

I feel cheated.

The Hospital

Its hard to sift through medical information translated  by and told to you by someone who is not medically trained. Impossible really, kind of like playing the classic kids game "Telephone".  You get the overall drift, but you don't have the details and diagnostic picture of what is really going on.

Hospitals are familiar territory to me. I've worked in all kinds:  everything from a huge inner city public hospital in New York with hundreds of beds, to  a tiny rural outpost in Washington with 25. Arriving at Good Sam, I navigated the halls and construction that seems to be part of every hospital these days to find my Dad's room.  I took note of the names of the units that I passed through , not knowing where he was housed. I was relieved to find that he was on the Ortho unit and not the Psych unit.

He was doing PT when I arrived. He looked like he was doing OK but I searched his face for clues about what was going on.  The PT and the nurse told me he was doing much better today, the new medication was working. Geodon is a powerful anti psychotic that is used to help people with LBD by squelching the hallucinations.  Tick.  Another confirmation that it was going to be LBD , even though I hadn't officially heard the diagnosis yet.

When he was settled back in his room, he looked so vulnerable . I asked him if he understood what was going on with him and he said "Why don't you tell me what you know".  Deftly covering. The young shiny nurse  confirmed that the Neurologist diagnosed LBD.    He listened intently trying to make sense of it all, he asked if something he did caused this.  His looked young and sad, like a little boy.  I told him that it was simply bad luck, nothing he did caused this.  Nothing.  All the while I am hoping in my own mind that this terrible thing, my new friend Lewy,  is not genetic. That I won't one day be facing the same thing.

His wife arrives.  He is happy to see her.  She's been at the gym working out. They chit chat.  Then the "Team" comes in:   Geriatrician, Resdient and medical student.   They dance around the diagnosis but when   they finally say it- Lewy Body Disease , I can see that she doesn't believe it, doesn't want to take it in.  But his MRI is normal she says.   I can't blame her. He is only 70. He's supposed to have years left to enjoy life, to watch his kids grow into adults.   To travel, to read, to enjoy retirement.

I tell her  that  it is true.  They use the same electronic medical record program that we do, and when the nurse opened the chart, my eyes went straight to the assessment : Diffuse Lewy Body Dementia.

My Dad starts to cry, she kisses him and tells him its going to be OK.

I wish I could believe that.