(Real-time Entry)

Friday turned out to be an unexpected whirlwind for my mom and me after we received less than desirable news… over and over again.

It all began with a family meeting with Dad’s psychiatrist at Botsford Hospital to bring us up to speed with his treatment and prognosis after 3.5 weeks in the Geri-Psychiatric Ward.  The news wasn’t promising, as Dad hasn’t been reacting predictably to their usual regimen of meds typically used to curb aggression in Alzheimer’s patients.  Apparently, my dad appears to be somewhat of a baffling case for them…

Dad’s psychiatrist suggested that Dad may have another complication in ADDITION to Alzheimer’s!  He introduced us to the concept of Frontotemporal Dementia – otherwise known as FTD or Pick’s Disease.  He explained that a brain affected by Alzheimer’s dies in its entirety yet very slowly, whereas, Frontotemporal Dementia attacks just the frontal and temporal lobes of the brain but kills that part of the brain very aggressively and quickly.  He said that Dad’s newfound aggression, physical violence and inappropriate social behavior could easily be explained by FTD, including the shocking rate at which he seems to be in decline.  The doctor pointed out that within the 3 weeks Dad has been at Botsford they have noticed a drastic reduction in his abilities and recognition; they’ve even noticed a drastic decline in just the past 5-7 days!  He said that 3 weeks ago Dad would eat if he was hungry and food was placed in front of him; he says that now Dad just stares at the food and can’t process what to do with it.  This change has happened within 1-3 weeks!  He pointed out that Alzheimer’s absolutely does NOT act this quickly and that an Alzheimer’s diagnosis alone doesn’t explain the last 5 months of severe decline we’ve astonishingly witnessed.

I suppose the good news is (assuming that this suggested FTD diagnosis is correct) that perhaps Dad’s suffering won’t be prolonged.  At the rate they are witnessing his degeneration, it was loosely suggested that Dad may not live out the year.  Six months was even thrown out when I pressed.  Of course, as usual, “no one can say for sure…”

Well, I say, Halleluiah! – please just take him home!  He is tired and restless and has been preparing spiritually for this part of his trip for a very long time.  He is ready, and he deserves peace.

The obstacle now though is where will he live out his remaining days?  (watch video below)

(Real-time entry)

Anti-depressants: Day 30.  OMG, the results are A-M-A-Z-I-N-G.  I feel like my old self again!!!  I can’t tell you what a RELIEF that is and how great it feels.  I have been so weighted down for so long that I was really starting to wonder if I was still the same person inside.  I’ve actually been concerned that maybe the sparkly, fun, energetic “me” had left for good.  And, man, I really liked that girl.

However, in the past 3 days I’m suddenly getting out of bed faster, my energy is higher, I once again feel empowered to attack projects, and I desire social interaction.  Basically, I feel re-inspired to get my life under control and I am oh so excited to re-meet myself!!

So here I am at home having revolutionary, life changing results from one lone prescription, this little magical pill…

…And there my dad is in a psychiatric ward with a current combination of SIX drugs coursing through his veins: Depakote for seizures… Lexapro for depession/anxiety… Xanax for anxiety/panic… Desyrel for panic attacks… Zyprexa for psychotic conditions… with a side dose of Ativan for anxiety/depression (as needed by injection – along with a padded cell!)!!!

Seriously?? And somehow the medical and legal communities think that THAT is MORE humane than allowing a patient with a death sentence the legal and morale right to choose their own exit strategy, which may include just ONE pill?  I don’t get this part.  I really don’t.  I don’t get why we think it’s humane to put down our pets when they’re failing and in pain, but yet we don’t allow our fellow humankind that same decency.  Shouldn’t that be everyone’s personal right to choose for themselves?  Wouldn’t it be much more peaceful if a proven-to-be-dying person was to take their last breath in comfort surrounded by their loved ones in a controlled setting?

My dad clearly expressed wanting out before the end.  I believe what stopped him is that he didn’t want to die alone.  A highly social person who thrives on camaraderie and love, I don’t believe he wanted to exit alone after such a beautiful lifetime of family and friends around him.  …And so he stayed longer… which means he eventually lost perspective of time and perspective of his limited window of opportunity for that exit plan… and here we are.  He’s lashing out, harming himself and others.  He’s in pain.  He’s suffering.  He still regularly refers to one-liners about wanting to be dead, wishing he had a gun, wanting it to be over.  But it’s now too late for him to do anything about it, and I think he’s mad.  Mad at the world for not helping him end his misery… and mad at himself for ending up exactly where he never wanted to be, helpless, alone and afraid with no end in sight.

Honestly, as a race, what are we doing to ourselves?

Today was Christmas. I bought Dad the game Catch Phrase, which he was so good at on Thanksgiving. I figure it’ll keep him mentally sharp, like how the experts suggest doing crossword puzzles after an Alzheimer’s diagnosis. However, Dad didn’t seem to have time to properly digest and comprehend the gift before someone else was handed another present and the Christmas commotion continued.

It was obvious that Dad wasn’t keeping up with the action today, especially during the gift exchange.  There was just too much going on at once – music, side conversations, tearing paper, a giddy grandchild, brightly-colored gifts, drink refills, video cameras, photography flashes… Understandably, Dad was acting very A.D.D.-like with all the surrounding stimuli. He was on overload trying to compute it all. But I have to hand it to him, he was in pretty good spirits, just a few steps behind everyone and every conversation. A little foggy almost. But we were all together and I kept focusing on that…

At the end of an amazing day with my family, for which I was so thankful, my husband picked a fight with me on the way to our car at midnight and I ended up going to bed sobbing, not understanding why he had to ruin such a nice day. I mean, just when I seemed to finally not be toppled over by my dad’s condition, he toppled me over anyway. I’m severely on edge and my insomnia is a bad as ever…

At last night’s family meeting, Mom mentioned a limited release movie about Alzheimer’s that’s playing at a local theater.  She highly suggested that we all try to see it in the next two weeks before it’s gone. 

In some sudden burst of need and panic, I found myself in that dark, nearly-empty theater this afternoon, watching Memories of Tomorrow all alone.  I was sort of driving by the theater doing errands and felt instantly like I was being pulled into the theater, like I just HAD to see the movie right this instant, I had to KNOW!  It was a very weird experience.  My breathing was erratic.  It felt like my life absolutely depended on it.  My car practically steered itself into the parking lot.

The movie was powerful.  AMAZING.  I had to adjust to subtitles (the movie is Japanese and uses English subtitles) but once I made that transition I was enthralled.  The movie was about a business executive forced into early retirement because of early-onset Alzheimer’s and how he and his family dealt with their life from that moment on.  IT SO RESEMBLED OUR LIFE!  I totally related to the story and it exposed me to some shocking things that can happen.  With raw emotions, I walked out of the theater stunned yet enlightened.  Enlightened to negative consequences of the disease, horrible things that my family might have to endure along the way, things like physical violence.  It’s hard to digest but I strongly believe in forcing myself to be educated on the topic and knowing what to expect.  Or knowing really what MAY happen, as all cases differ.

I instantly called my husband from the parking lot and told him he HAD to come see the movie with me tonight.  He needed to know the truth about this disease as well.  He must have heard the irrational urgency in my voice because he agreed to go with me that very night.

All I remember now is he and I sitting on the bench in the lobby waiting for the previous showing to let out so we could be let into the theater.  Then, the show was letting out and masses were silently walking by us.  Then, two pairs of shoes stopped in front of us.  I looked up.  It was my mother and father – WHITE AS GHOSTS!  They literally were in shock.  We had a very short correspondence and then they said they had to go and they curtly walked away in silence.  It was horrifying.  It was like watching the living dead.

Part of the reason Dad went back in for retesting this spring is because there were so many problems at work.  He has owned and operated numerous successful businesses in his lifetime.  The latest venture involves him and my oldest brother, Frank Jr.  (That’s right, Frank and Frank.  Plus, my mom, Fran, runs Accounting and Human Resources!)  Dad switched his President status with Frank Jr.’s VP status a few summers ago, and now the younger President just has too many complaints about his father’s performance.  Dad, who always memorized a roomful of strangers’ names at every party, now couldn’t remember having received an email, where he had filed it, or what his To Do List was following a staff meeting.  It was becoming a big problem.

So now with the Alzheimer’s diagnosis as proof, he is being coerced into early retirement.  He has been asked to leave his own company for the good of the company.  He has been abandoned by his baby – literally.

Noted, Dad’s long-term disability insurance benefits were also a consideration in the matter.  Before age 65, he was eligible for 30 month’s salary after diagnosis.  Having been diagnosed at age 64, six months before his 65th birthday, he is now eligible for maximum coverage.  But that’s the rational decision.

Today was his last day of work forever.  There was no big party, no big fanfare.  There was no time to prepare; it had all happened too fast.  He just kind of said goodbye to his coworkers at 5:00, shook hands, hugged, and casually said goodbye.  I think that must have been horribly sad for him.  After all, where was he walking to?

I feel like I’ve been researching Alzheimer’s information for two months straight (and I have!) on top of a full-time job.  I now know that there was a very unfortunate detail overlooked the day my dad was diagnosed with Alzheimer’s: the doctor’s office didn’t give my parents a New Patient Information folder which is standard upon diagnosis.  Not knowing this (and that I could’ve just called the office to get it!), I have taken on all sorts of research from scratch: what to expect with Alzheimer’s, where to find support groups, how long they may live, things you need to know, etc.  So, I’ve been immersed in this overwhelming research project – on top of freaking out and grieving myself! – trying to find out what steps we need to take, an expected timeframe of disease progression, where/when support groups take place in our area, etc.  I took it upon myself because I knew my mother couldn’t handle it right now and that this information would be her salvation.  I still get furious all over again when I allow myself to stew on the fact that the doctor’s office messed up a simple detail which has in turn caused me so much grief!!

Along my travels, I have read SO much information about Alzheimer’s.  However, one publication said something so poignantly that no other did: in the final stage of Alzheimer’s, a patient will ultimately forget how to swallow and then how to breathe – and they will die.  This fact sent me sobbing and over the edge!!!  To try to picture that happening to my dad – oh my god!  That is the hardest morsel to digest so far.  It’s now not just the fact that he’s going to die; it’s how he’s going to die!

According to the Alzheimer’s Association and other research, Alzheimer’s Disease can be broken down into 7 Stages.  Based on this information, I (desperately) calculate that my dad probably entered Stage 2 in the year 2000 when he first started noticing changes.  He probably entered Stage 3 in 2002, which was when he was initially tested and told that he may be entering the very beginning stages of dementia.  He was in Stage 4 when he was retested in 2007, which was when he was diagnosed with Early-Onset Alzheimer’s.  Then, based on this 7-Stage sliding scale, I “predict” that my dad may enter Stage 6 by 2012. 

To me, Stage 6 seems like the final stage in which the person will cease to be the person you’ve always known.  They’ll know their name but not their history; they’ll no longer be able to function on their own for daily activities like dressing, bathing, toileting; they’ll begin hallucinating – and wandering.  According to the published information, the person with Alzheimer’s may survive anywhere from 3 to 20 years.  Well, that’s not very helpful!  God, I just wish someone could tell you WHEN shit was going to happen.  But it’s all such evasive information; I think that’s part of the constant torment!

I made my mom choose a support group and I went with her today.  It was at Holy Cross Church in Novi.  She was nervous and uncomfortable on the way there – but even she admitted that this experience would probably be good for her.  I was so proud of her for being strong enough to go.

And then… no one came.  No one.  It was just her and me and the facilitator.  Do you know how f*’d up that is to finally reach out for help – and no one shows???  It was a very grey, all-alone kind of feeling.  I felt HORRIBLE for her.  God, maybe she’ll never reach out again because, after all, what good does it do anyway?  I pray that she doesn’t fall into the-best-person-to-look-out-for-you-is-YOU mentality.  Wow.  We were the only ones there.

The facilitator asked Mom to introduce herself anyway and then asked her if she had any questions she’d like to ask.  I think it was good that she was invited to ask tough questions in a venue where someone was potentially going to know the answers.  And she was pretty much forced to ask the big, bad, scary questions – because, after all, what else were we going to do for an hour, look at one another?  Her and I have been feeling our way around in the dark on this so far, both too injured and uneducated on the topic to help one another effectively.  Finally, we had someone before us who has seen this happen to others.  So Mom asked… When do you consider a home?  …When do you take away the keys?  …How fast will he slide?  …How long will this last???

Mom even admitted aloud that she still hasn’t cried since hearing the diagnosis.  That’s two whole months!  The facilitator told her that this was a safe place and to go ahead.  And we waited.  And then my mom cried.  She sobbed.  For about thirty seconds.  And then she shook it off, apologized, and said she felt silly, as she dabbed her eyes back to composure.

On the way out, Mom wholeheartedly thanked the facilitator for her time and understanding.  But we left not knowing if Mom had gotten any real benefit from that experience or not.  I think she did.  Maybe it was having been given permission to finally cry.  Maybe she realized that, even though no one showed up, her support group was already by her side.  Maybe I was enough.

Mom and Dad are due back from Greece tonight!!  I can’t even properly describe the elation, relief and anticipation I have in the matter! 

I feel as if I’ve been whirling around and slowly drowning inside an emotional vacuum since they broke the news and left.  I have such HOPE upon their return!  It’s like I can almost breathe again.  I feel like once I can actually see them with my very own eyes it’ll be like they are once again real and alive and by my side.  I’ve felt such dark aloneness in their absence.  I realize I’m losing Dad but I just experienced an earth-shattering view of what life would be like without them BOTH!  My god, I’ve been so lucky having them around – 37 years of their support and involvement in my life.  How blessed my life has been because of them, how enriched it’s become with them helping weave the fabric of my life.

So, I guess, I’m grappling with the thought of… what becomes of me once their gone???  They have always been such a rock for me, the base from which everything for me has sprouted and grown.  They are SUCH GOOD PEOPLE.  I loose my breath when I think that someday they’ll be gone.  Someday, I’ll be totally on my own. 

I mean, geez, I’m married so it’s not like I’m exactly all alone in my life.  But I derive such peace from just knowing they’re around, that I can call them up and involve them more deeply in my life at any moment.  They have taken SUCH good care of me, as a child, a ridiculous rebellious adolescent, as an unmarried adult, even now.  They always do whatever they can to ensure that I’m okay.  They are some of the best people I have ever had the pleasure of knowing.

So, tonight they’re back!  And I want to welcome them home with outstretched arms and a marching band in their honor!  Of course, I’ve settled for the largest bouquet of flowers I’ve ever bought (which I split the cost of with my brothers) – which I’ve secretly placed just inside their back door so it’s the first thing they’ll see when they walk in their house!  I just want them to know that I am SO GRATEFUL they’re home.  That we can resume where we left off.  That it’s not over.

I’m spinning out of control in a total panic!  I can’t stop crying.  I’m sobbing as I’m typing this.  I know I’m losing my dad, but with them dropping the “A” bomb on me and leaving town so fast and for so long, I now have this unsettling panic that I’ve lost them both!  I realize it doesn’t make any sense rationally.  But Mom and Dad are both out of touch to me – somewhere unreachable on the other side of the globe – and I just feel like they’re both never coming back. 

F***.  My entire world is crumbling!  I can’t explain what’s going on inside but I’m spiraling downward to somewhere I don’t want to go.  The entire world looks bleak.  It’s hard to breath.  I can barely get out of bed.  I cry all the time.  Even at work, I lay and cry on my desk.  I can hold it together for short periods of time, but then it all comes bubbling out, no matter where I am!  Jac has made me come over, she usually can cheer me up out of any mood, but at her house all I do is flop on her couch and cry harder.  I can’t get it together.  I know this isn’t rational.  But I can’t rationally pull myself out of these dark depths.

I tell myself I’m SO LUCKY to have had the life I have had: GREAT parents, a privileged upbringing, everything a child could long for… But then I crumble and am paralyzed with fear and emptiness that it’s all coming to an end.  Camelot is crumbling!!  THEN what do I have??  I’m tormented by some force I can’t even explain nor get my head around.  I am afraid and see myself sliding down a VERY DARK path…

I’m numb but feel that I should write something down so I remember this ominous day.

Mom and Dad leave in the morning for their long awaited 3-week vacation & cruise through Greece.  They called tonight to say bon voyage!  Or so I thought.  They called to say that they finally received a diagnosis today from Dad’s months of ongoing tests with the University of Michigan.  DAD HAS “EARLY-ONSET ALZHEIMER’S DISEASE”.

OMG.  I’m almost not even completely sure what this means – except that it’s bad.  Really bad.  Like, as bad as it could possibly be.

We’ve noticed some small – but very noticeable! – memory issues lately.  Like, when I was visiting recently, Mom and I were talking about something and five minutes later Dad interrupted us with, “I don’t know where I heard this, but someone told me recently that…”  It was what we had just TOLD HIM!  Mom and I just looked at each other blankly – and then tried to pick back up where we left off.

Problems have been arising apparently at work between Dad and Frank Jr. and the other employees for some time.  I think this is part of why Dad went back in for re-testing.  Five years ago they sent him home from testing with a very loose diagnosis that he may be developing some type of long-term dementia.  Before that, I think he was on some unproven supplements to help with memory and no mention of dementia was given.

SO, here we are.  Shit.  My parents are ascending on their long-dreamed vacation with THIS hanging over their heads??  I told Dad, “You know what, Dad, you should have a frickin’ drink already!  I think this vacation should be the time you say goodbye to healthy living and just really live it up!  Seriously, you need to have a drink.  Probably a few!”  He agreed that I might be right, that after ten years of not drinking and tending to his body in a non-fanatical way, “Look what good it’s done me.”  But he was pretty upbeat, at least in a “I’ve had a wonderful life and will take what God gives me” sort of way.  Admirable.  He’s quite a guy, my Daddy-O.

Me?  I’m pissed.  They’ve worked hard their whole life, they’re SO close to retirement, and THIS happens?  I’m scared.  I know things just changed, that somehow the end just began, but I still don’t really know what that means.  Maybe I’m just overwhelmed with a concept I just can’t yet grasp.  Maybe there’s a better word.  It’s so hard to say when I’m just this numb.