I am tickled pink to know that this website continues to be viewed around the world daily!  Through viewers’ posts and emails, I have learned what an immense relief it is to other caregivers to know that they’re not alone and what to expect with this complicated disease.

To offer better support and insight to caregivers throughout their ongoing journey, today we are proudly revealing our new website: www.FranklySpeakingAlz.com!

I hope that you will share and pass on this new site to others who are struggling with Alzheimer’s.  A new PROBLEM/SOLUTION format imparts the priceless lessons I have learned as a caregiver.  Plus, the new WEBISODE SERIES format starts at the beginning of my family’s story, revealing in much more detail the roller coaster ride that overran our lives, including footage of all my family members to demonstrate the complex dynamics of a family in turmoil.

Please know that, because there is such useful information here, I will continue to keep this Original Blog LIVE, but I will no longer be posting to it.  You can always find my Original Blog at www.FranklySpeakingAlz.WordPress.com or simply by clicking the bright red ORIGINAL BLOG button on my new site!

Good luck to each of you on your journey and please stay in touch by subscribing to my new Webisode Series at www.FranklySpeakingAlz.com!

Peace and love.

~ Joleen

I will be forever grateful to Karen Drew, Reporter, with the local Detroit NBC affiliate, WDIV-Channel 4.  She aired an AMAZING story tonight about my personal journey with Alzheimer’s and how I’m turning it into a movie bound for submission into Sundance Film Festival!

It’s incredible for me to see this vision that was born 4 years ago actually coming to life.  Amazing things happen when you speak your dreams.  Dreams DO come true!

Daddy-O would be SO PROUD!!!!!!!!  🙂

 

When I started blogging years ago, I wasn’t sure where my story was heading.  I was clear, though, that it was a story about my dad living with Alzheimer’s.  I gave some backstory and then used the blog to report on my dad’s health status.  It was only over time that I truly realized what I was really up to – I was spilling the truth about what was happening to me and around me during the great Alzheimer’s slide.  Somewhere along the way, the story of my dad having Alzheimer’s morphed into how I was reacting to my dad having Alzheimer’s.  It became the story of Alzheimer’s through my eyes, the eyes of a caregiver.

Blogging in the middle of the night, I’d think, If I can help just ONE person, it will be worth the effort.  If just ONE person visits this site and gets some relief by reading this, the project will be a success.

And then an amazing thing started happening – I started getting comments from people I didn’t know who were actually connecting with me.  I was making a difference!

So I continued blogging and telling the story, digging deeper into my emotions and psyche so that I could truly understand what I was going through so that I could accurately report back.  It became my self-proclaimed duty.  And so I wrote, I cried, I celebrated small victories, and then my dad died.

There was a natural tapering off of my blog entries as I took much-needed time to grieve my loss.  I would check back in by posting a new entry on milestone events like holidays or anniversaries.  But after 6 months I started thinking to myself, Well, now I’m just talking to talk.  No one cares what I’m up to – this story was always about Dad.  Now that he’s gone, there’s no more story.

I felt compelled to post an entry on the 1-year anniversary of my dad’s death.  It seemed full-circle and important to the overall story.  It was comments to this entry that really got my attention: Seeing you training for a triathlon made me realize that I AM going to get through this!…  Knowing that you survived the horrible psych ward experience made me realize that I can survive it too if my worst nightmare happens…”  This was a big acknowledgement and a huge realization for me – this story IS about ME!  🙂

I find Dr. Kevorkian’s life interesting and the specific ending to his life compelling.  Intriguing.  Mysterious.

I mean, after his staunch support of assisted suicide over the years, I half expected him to go out with a bang – a final thumbing of the nose to the government system he found so overbearing or a final message to the world regarding his well-known topic.  But peacefully in bed listening to his favorite music??  Hmmm… curious.

I’m aware that I am probably even more drawn to his story now because of my personal experience of watching someone die in bed listening to their favorite music.   (For the record, that still seems to me a pretty good way to go! – minus all the suffering that may come beforehand.)  However, I also personally know Geoffrey Fieger and consulted him while my dad was suffering.  And in my dad’s final week, my mother and I left our bedside vigil in order to attend the by-invitation Detroit premiere of the HBO film, “You Don’t Know Jack” – a very interesting dichotomy.

However, I think Dr. Jack’s personal ending purely demonstrates his overall mission – he wasn’t ever trying to avoid life by choosing death.  Rather, he was trying to help dying people avoid suffering and loss of dignity.  People who knew they were going to slowly die from an incurable disease.  People who were already experiencing increased pain and suffering every day.  THAT’s where Dr. Jack gets me every time.  I connect with that concept.  Always have.  Even before my experience with Alzheimer’s.

But, let’s face it, Dr. Kevorkian himself wasn’t suffering in the end – he was simply dying.  He was dying of natural causes and he chose to continue on that route.  I think that’s cool.  I think it’s important for him to have made that choice for himself.  Not the specific choice of choosing a natural death necessarily – but rather that he probably considered all of his options… and then he powerfully chose his exit strategy.  I think there’s dignity in being able to choose how you die.

(NOTE: I clearly understand that he went to jail for actively administering a lethal dosage to someone which made it “active voluntary euthanasia” vs. his previous acts of “physician-assisted suicide” where he provided the dosage to someone else to administer to themselves. Click these links for an explanation of the difference and the variances of the law.)

I am too emotional and strapped for time to edit this video down to be any shorter than it currently is, let alone even add one dissolve to it.

An intervention of fate?… I dropped my camera and my lens cracked this week – but I videotaped the events as they unfolded nonetheless, cracked lens and all!

(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)

The experience at the psychiatric ward has gotten worse before getting better.

Following a positive and energized week for me last week, I then visited Dad over this past weekend and was throttled by what I saw.  The hospital had him so drugged (in their ongoing effort to subdue his violent outbursts and reduce his hallucinations) that all he could do was mumble unintelligently while strapped into a wheelchair bent over at the waist unable to hold himself up and drooling. My God, how could there be such a horrific change in just 5 days??  I began struggling with what they’re doing to him, I became very angry at the medical and legal systems for thinking this was the best way to treat a sick person, and I began that oh familiar spiral downward…

Saturday’s visit was the worst one so far, partially because I was so unprepared for what I was going to find. Sunday Dad was still unable to use most muscles in his body but he was no longer drooling and was able to utter partial phrases, which I tried to understand by putting my ear to his lips.  At one point, he said I should call my cousin Debbie.  I said, Sure, Dad, I’ll call Debbie.  And why don’t I call cousin Karrie as well?  She sent you a big hug today and I could tell her you sent her a hug back! He said, Just… call all the girls… and tell them. I asked, What do you want me to tell all the girl cousins? He said, Uncle Frank… is dying. Tears welled up in my eyes and my Mom’s.  We were grateful his eyes were closed so he couldn’t see us.  I said softly to Dad, Is that what you think is going on here, Dad? That you’re dying?? He said, Pretty much… that’s what I see… going on. And he fell asleep and we silently cried.

I experienced a couple horrible days following those visits with a lot of tears and an unmotivated heavy heart.  I only started perking back up after Mom reported last night, Wednesday, that when she walked in for her visit, she found Dad walking around with the help of a nurse and he had been talking about the love of his life, Fran, and then he said, And there she is! The doctor had just changed Dad’s antipsychotic medication from Zyprexa to Risperdal (I believe with the other 5 meds remaining the same) and the results seemed nearly instantaneous and unbelievable! (NOTE: It is believed that by altering communication among nerves in the brain and by altering communication through neurotransmitters, this class of atypical antipsychotic drugs can alter irritability, resistant depression and the psychotic state.)

I have to admit, I woke up this morning a LOT easier and faster!  It does seem that when Dad’s having a good day, I have a good day; and when he’s not, it’s very bad news for me.  Interestingly, I am undoubtedly the only family member who is this affected by it all.  I’m also the most emotional person in my immediate family, besides my father.  And I do spend a lot of time and energy mulling over everything so that I can report back on it for my movie and website.

Does this sensation of me being so empathetic to his situation simply make me a dedicated and loving daughter and a good storyteller as a result of our close relationship? Or is it a detrimental effect that is harming me and my health and my life? My God, do I unconsciously believe that I need to suffer along with him?? I need to figure this one out so that I can support him without being dragged down by the awful set of circumstances that is undoubtedly going to continue to be in our lives.  As they say, I need to get a grip.

P.S. Today the 2 in-home care workers who stole from us went before a judge at The Frank Murphy Hall of Justice in Detroit (home of the Wayne County Circuit Court) and pleaded GUILTY to ALL counts!!!  Their trial and sentencing is set for March 19, 2010.  That news, on top of Dad’s turn around, was the perfect platform for my mother to board a plane today for Florida for some much needed rest, relaxation and decompression.  I hope she finds what she needs.

P.P.S. I wrote this blog this morning.  Below is video following my afternoon visit today with Dad.

(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?

(Real-time entry)

It’s been two weeks since I have stepped foot in my own house as I have been staying at my mom’s since January 31st (when it was still my mom and dad’s).  What a long, emotional two weeks it has been.  But I finally packed up my things and returned home two days ago on Sunday night to try to get back to my “normal” life.  I had plans the next day to forego a visit with my dad for the first time since he’s been at the nursing home.  I thought these were things I needed to do.  But the transition wasn’t as flawless as I had anticipated.

Home less than an hour, I went to bed early not feeling so great.  My stomach was upset and I just felt crummy in general.  Throughout the night things got progressively worse and I started to think that perhaps I had food poisoning coming on.  I would get hot, then cold, and I was sweating but had no fever.  I became intensely dizzy and, in my coma state of sleep with an over-the-counter sleep aide, I’m not sure if I kept falling back asleep or if I kept passing out.  At one point upon waking up, my hands and arms were tingling and I actually took the time to write my symptoms on a notepad in the dark on my night stand in case someone found me there unconscious.  I considered calling an ambulance, but I was too much in an unfit state of mind to make a rational decision.  I thought I had awoken my roommate and asked her to drive me to the hospital (she had refused, telling me it wasn’t that serious if I didn’t have a fever), but I now realize that I either dreamt or hallucinated that event.  I woke up after noon the next day and, at that point, I could assess with a clearer head that something was still wrong. My vision was wobbly and when it intensified I would get severely dizzy and begin sweating.  I had just decided to somehow get myself to the hospital when my mother called me from out of the blue and then came to my rescue.

She and I spent four hours in the emergency room waiting for a verdict.  After an EKG, blood work and a physical exam, it was determined that I am having a stress-induced anxiety attack with vertigo-like symptoms.  The news made me cry with relief – and then with distress as I realized how everything has gotten the best of me despite my best efforts.  The most ironic part is that they put me on the same anti-anxiety pill that my father is now on at the nursing home to calm his nerves and emotions!  Wow, and I thought I was doing so well! 

It’s funny.  I thought I was dealing with this as best as possible: I’ve been analyzing my emotions instead of locking them away; seeking therapeutic measures to understand the process I am going through as I’m going through it; and documenting my experience as a promise to both myself and my dad in order to help others going through a similar experience.  That last part has even helped give purpose to the tragic events, making me feel like some good can come out of this all.

However, I guess the danger is that much of what I do in my spare time and for work (which lately has been mostly my blog/website and documentary movie in-the-making) is all based on Alzheimer’s – which doesn’t allow me much of a break from the topic of my personal life.  And because I’ve decided to make this personal experience open to the public, I haven’t saved many undisturbed places for myself to go when I need respite.  Between editing my dad’s autobiography for half a year recently, shooting my experiential movie for nearly three years, plus living through this emotional rollercoaster daily, I guess I’m just on overload.  When your eyesight gets wobbly, you start seeing the world through a wormhole and you’re have trouble breathing, I guess it’s time to assess your life.

I think my job now is to focus on some non-Alzheimer’s topics and figure out how to continue on with my life – which of course entails figuring out what “the rest of my life” truly means to me.  That’s a wide open sea, which the rational side of me knows means lots of opportunities, but the emotional side of me sighs and wonders where I’m going to go from here.  An income-producing job and dating probably land somewhere on that list, but there are still a lot of unknowns as I am forced to redefine my life and figure out what paths to take from here.  And there is such an emotional fine line for me to figure out regarding how often to visit my dad and how much to let go. 

Like I’ve said before, you never know how you’re going to react to a diagnosis of Alzheimer’s in your life.  It affects everyone differently in different ways and at a different pace.  This is apparently my current route to travel in order to get to the other side.

NOTE: In order to allow myself the necessary space to recoup so that I can come back clear-headed and healthy, I am inviting GUEST BLOGGERS to participate on this website for the next week.  If you’d like to share your thoughts, experiences, visits with Dad, or any other wisdom on this topic, please feel free to post something.  As I have to officially assign Guest Bloggers, I have only given access to a few people at this point.  If you’re interested, let me know or else simply type your thoughts using COMMENT under someone’s blog entry and it’ll show up on the site as a conversation thread.  Thanks for reading, caring and for participating!  ~Joleen

(Real-time Entry)

Events and emotions have swung the entire pendulum over and over again the past few days since putting Dad into a nursing home.

It started out Jan 1 with us feeling horrible and heartbroken as we drove him there and left alone.  Based on much advice we had received from dementia and nursing home professionals, we took Dad to see the “new club” but we never said goodbye when we left, we just kind of slipped out when he was happily preoccupied.  It is this fact that has been burning a hole in my heart ever since.

We left him there around 1:30p and Mom called and spoke to Dad on the phone at 4:30p to see how he was doing.  He was laughing without a concern in the world and didn’t appear to miss us or wonder where we were!  What a RELIEF!  Then, a few hours later we received a phone call at 8p from one of the nursing home directors saying that Frank Firek is the spark this place has been missing for a long time!!  He is so social and funny and kind.  He is socializing with everyone.  We are just really blessed to have him join us!  He is a beautiful spark that is shining throughout the home already.  I think he is going to be just fine.  That phone call allowed us to get to sleep that night and we considered it a true gift from God. 

However, it was another comment the director had made that woke me up crying in the middle of the night and again in the morning.  She recounted for us a conversation that she and Dad had had earlier in the day.  When she asked him if he liked the place and told him that if he did he could stay, he replied, Yeah, I’m gonna live here the rest of my life.  Surprised, she asked him if someone had told him that.  He replied with resignation, No, I just sort of figured it out on my own.  OH GOD!!!!  I feel so HORRIBLE for STRANDING HIM THERE with NO EXPLANATION!  And he STILL figured it out!?!  WHY didn’t we just TELL HIM THE TRUTH so that he didn’t have to feel so ALL ALONE once he realized the cold, hard truth??  How could we DO that to him?!?!  God, he is SO SMART – even now.  That brain is working overtime and he is figuring out some very complex stuff we were told he wouldn’t completely comprehend this far into Alzheimer’s.  He still amazes me.  He is still there.

The next afternoon, Mom and Todd and I went over to the nursing home for our first visit around 4p.  He was dancing to a live singer/guitarist while everyone else in the audience politely sat and listened.  He was doing lovely, peaceful ballet-style movements, moving all about the singer in the open floor space – he even kissed a few ladies in the front row on their hands and the tops of their heads – a total Frank Firek move!  😉  When Dad spotted Todd, he said, Oh HI buddy! and danced his way over to Todd with a smile on his face.  Todd hugged Dad while Dad danced before him and Mom and I waved and said hello to which he nodded, smiled, and peacefully danced back off toward his “stage”.  We all watched in amazement at how well he was assimilating, how peaceful yet happy he appeared, and how he was bringing such life and joy to this place.  PROUD is definitely a word that was in my head and heart as I watched my beloved Daddy-O just being himself.

Moments later, we started getting partial updates from people around the home that last night Dad actually slept through the whole night (yes!!!).  Then, we learned that there had been some trouble prior between the positive phone call we had received and his bedtime.  The books and the professionals and the doctors prepare you for this sort of thing but we just didn’t think Dad was going to experience this side effect of Alzheimer’s.  After all, he is the most kind, loving, patient, non-violent man you’ve ever met!  And he seemed to become more of a pussy cat during his decline these past two years, making the thought of him lashing out absolutely ludicrous.  Well, lash out that night he did!  While sitting quietly at a large dining room table with other residents while winding down for bed, for no apparent reason Frank Firek stood up, lifted his chair to the ceiling screaming, seriously got in a female nurse’s face when she tried to intervene, PUNCHED a male nurse in the face!, and grabbed a second male nurse (the largest man in the room) by the testicles, squeezing and yanking as hard as he could, even ripping the man’s pants!!!  They claim they’ve never seen a resident anywhere behave in such a violent way!  Frank Firek???  You’ve got to be joking!  Todd, Mom and I all thought they were kidding us!  But by the grave looks on their faces you could tell it had been for real. During the altercation, all the residents were evacuated to their rooms and locked down for their own safety!  Dad was eventually led to a couch alone to calm down.  Someone kept briefly checking in with him every now and then and at one point when asked how he was doing he amazingly said, How’s my transition going?  The answer he received was “smooth”.  Dad said, I like smooth.  I thought you were going to kick me out of here.

It’s just amazing how much he is comprehending – WHERE he is, HOW he behaved, the potential CONSEQUENCES of his actions.  When I asked Mom through tears HOW he could of figured it out, did we say or do something in the days leading up to it?… she responded with, Joleen, your dad is a highly intelligent man.  It doesn’t surprise me at all. 

After the singer finished his performance, Dad immediately plopped into a soft wing-back chair and closed his eyes.  Todd knelt next to him, rubbed his arm and started talking softly to him.  To me, my dad seemed confused as to why he was here but so was Todd – almost like it’s supposed to be one world or the other.  I felt like he was over-processing the current experience but, being too tired to figure it out, he just kept closing his eyes.  I don’t know, maybe he was mad at us and was trying to punish us.  Todd thinks that Dad realized where he is, that he missed his chance to take his own life as he had planned, that he is stuck exactly in the middle of where he didn’t want to go, and that he is mad at himself.  That may very well be true.

The next day, on Dad’s second full day at the nursing home, he kept saying comments to my brother Frank during his visit like, I don’t want to be here; why am I here; what did I do wrong; I hate it hear – it’s quiet and there’s nothing to do and I don’t know these people; where are my friends; no one ever visits; I’ve got to find a screwdriver and break out of this place; I’ve got to find a man and hire him to pop my head off! (with a gun motion to the side of his head!).  It is such inexplicable anguish to know that my dad is miserable and that there is nothing any of us can do about it.  If the laws were different, if we could assist him in his final wish of life, we could all be around him holding his hands while he drifted off peacefully to his next stop in the manner he chooses.  I personally don’t see anything wrong with that and I don’t know why there is a law against assisted-suicide.  If we are all God’s children and He gives us free will and He loves us no matter what… then who is this law designed for??  I think everyone should be able to make their own end-of-life decisions and should be able to be surrounded by those they love in their final moments.  I think locking up confused people who will never again benefit society is a truly cruel act and I pray to God that changes will be made on this earth so that other grieving families can experience smoother transitions.

I have vowed to go back to the nursing home and tell my father that he isn’t crazy, to be honest with him finally – like we always have been, to tell him that this is his new house, that it’s okay, that even though he’s scared and can’t remember things that happen or why he’s there, that he just needs to remember ONE thing: that we love him, will always take care of him, will always make sure he’s safe, and that we will visit him every single day and will never leave him alone.  If he can remember that ONE thing, then all he needs to do with the rest is put his trust in God whom Dad has always believed in.  I have to remind Dad that God writes straight with crooked lines and that this problem is not one for us to figure out.  Daddy just has to be encouraged to find peace with his spirituality, to turn off all the noise and the thinking and to just surrender to God.  I think he’ll find the peace he’s so desperately looking for there.