(Real-time Entry)

My mother has been doing an INCREDIBLE amount of research this past week trying to find homes in the area equipped and willing to take Dad with his newly acquired behavioral problems.  I tell you, finding yourself through the maze of living options within the web of dementia healthcare is overwhelming, scattered and anything but black and white!  Between assisted living communities, nursing homes and private pay homes, some will take patients like Dad, but most won’t.  And it seems to only be through word of mouth that you can locate these places.  It’s a LOT of legwork!  I don’t understand how the healthcare system expects people like us to find the resources they require; it’s an insulting amount of time and effort that’s required from emotionally-distressed family members in order to find an adequate home for their loved one!  Imagine if my mother had a full-time job or kids at home… how would she have been able to take on this insurmountable project?  What about the millions of people like that who are at their breaking point and have no support??  There has to be an easier, more user-friendly way to find what you need!

Unbelievably, today is FIVE WEEKS that my father has been a Ward of the State at Botsford Hospital’s Geri-Psychiatric Ward.  They HOPE they may be able to discharge him sometime this week, but this call is so out of our hands.  He continues to lose weight at an alarming weight, is in bed sleeping during our visits lately, and is on a VERY large list of drugs.  He is still in there – but sometimes you only get small glimpses of him.  I personally think he’s doing amazing well based on the incredible circumstances and drugs that have been forced upon him.  He is definitely still my hero.  And I am starting to miss him terribly.  I have actually had a couple hearty sobs this past weekend in a newfound yearning for the “old him”, along with a realization that our amazing 2-way relationship is really more of a thing of the past…

The GOOD NEWS is that Mom has finally located a place that is willing to take Dad!  Plus, it appears that they are equipped to handle him through any difficult behavioral issues he may have, which means we wouldn’t have to relocate him to another home in the future!  Of course, it’s private pay, which Medicare doesn’t cover, so we’re lucky to be in the fortunate financial position to be able to take advantage of its services.  (I still worry about what others do in this situation when they aren’t covered by long-term care insurance?)  One bed just opened up unexpectedly – and Mom jumped at taking it!  We are paying for his room starting today regardless of when the hospital releases him.  I haven’t personally seen it yet but Mom says it feels more like a home than a hospital.  How lucky we are that my mom persevered!

So, hopefully in the very near future, Dad will be living at Courtyard Manor of Farmington Hills.  I look forward to being able to visit him again whenever I please!  🙂

We found a place… we found a place… we found a place – hallelujah!

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Heavy in research mode looking for Dad’s next place of residence; trying to maneuver the confusing maze of choices and state regulations.  Psychologically, I’m feeling stronger…  (watch video)

(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.

Forgive me if I sound a bit automated with this written recap.  The accompanying video clip will tell you the additional information you need to know.

Unbelievably, it was nearly a week ago that my father was transported by ambulance from Sunrise Assisted Living to Botsford Hospital’s Geriatric Psychiatric Ward for Involuntary Admittance by the State after repeated bouts of aggression and physical violence at the nursing home.  Apparently, this is a new stage he’s at in which you never know when the aggression is going to rear its ugly head.  Our family and friends have never personally witnessed one of these full-blown outbursts.

Dad was initially transported to Botsford last Tuesday afternoon and he wasn’t allowed visitors until Thursday evening when Mom and Frank Jr. went.  Mom then went back on Friday, only to be told that Dad was tranquilized and in isolation and that it had taken 3 security guards to hold him down for the tranquilizer shot.  The next day, I visited Dad at the Psychiatric Ward for my first time and I left with a heavy heart.

The few positive things I can tell you about this experience is that, first and foremost, the point of the hospital admittance is so that Dad can be strictly observed while his meds are tweaked until we discover the magical combination of drugs to return him to a calmer, happier, more peaceful state of mind.  Also, when we visit and explain to him why he is there, he agrees he should be there, he shows a heroic willingness to want to “get better”, and he can’t stand the thought that he might harm anyone (isn’t that SO much more like him?).  Lastly, I had a loving, heartfelt visit with Dad on Sunday – Valentine’s Day.  I will never forget that visit with him.  It melted my heart with love and helped make up for the sadder visit the day before.

However, it is touch and go and today Dad was in isolation again when visiting hours began. Mom and Frank Jr. were there and were allowed to help Dad out of the isolation room, but I am told that it required a wheelchair and that it took nearly half an hour until he was conscious or aware enough to look them in the eye or  respond to them in any way.  Before leaving, Mom gave Dad his first shave in a week while Frank Jr. held him up in a chair.  Mom says she is getting used to all the drama that seems to endlessly come our way… but I somehow just can’t believe it.  Sometimes I can’t believe any of this.

(Real time entry)

Okay, I have a pound of material to post but have been putting it off for weeks trying to take a break from the topic of Alzheimer’s to focus on me and my needs. However, after being sick yet AGAIN this week (for the 3rd time this month), I figure I’ll just jump online real fast to update everyone on a bunch of stuff all at once so I can get it off my chest and then everyone will be in the know.

COURT. The case of the “alleged” thieves has been transferred from Plymouth to Wayne County. The boys are still in jail awaiting a Feb 17th date with the Frank Murphy Hall of Justice to hear what the consequences will be if they choose to plead guilty. At least they’re still in jail and have had a very long month.

DAD. I’ve been visiting Dad 1-2 times a week – a combination of trying to step back a bit and simultaneously being sick. From what I can see, I would say that he has good hours and bad hours, no longer consistently good and bad DAYS. I’m not sure there is any method to the madness over there.

After yet another aggressive outburst today from my dad toward another resident (he was calling a woman derogatory names and trying to push her off a couch), the Sunrise Assisted Living psychiatrist made the professional call to send Dad to Botsford Hospital’s Geriatric Psychiatric Ward for 5-7 days of strict observation, monitoring and prescription tweaking. A bed wasn’t scheduled to be open at Botsford until tomorrow, but after yet another outburst this afternoon, the police were summoned to Sunrise. After Dad responded disrespectfully to them, an ambulance transported Dad earlier than planned to Botsford for what is called Involuntary Admittance by the State. Last I heard, he was going to be kept in the ER until a bed opened in the ward.

I can’t even IMAGINE what he is going through. When he was in the hospital for seizures 1.5 years ago he was overwhelmed, scared and utterly confused. My poor, poor Dad…

Of course, Mom and I were horrified to hear this news today and then distraught when we were informed that Dad will only be able to have very limited visitors for ONE hour a day. God help him. He is going to be all alone on this journey.

The upside to all of this is that apparently this course of action happens to approximately 30% of Sunrise’s Alzheimer’s patients (based on the 3rd party information I received today) and there can be amazingly positive results that emerge from the ultimate experience. Hopefully, Dad will emerge transformed, calm and peaceful. This is at least what we pray for him everyday. It seems to be the only thing we can really do.

(Real-time entry)

I am still under the weather but I am slowly healing, both emotionally and physically.  My medications (from my ER visit 9 days ago) have been downgraded, and now I am working on getting my voice back after a serious head cold struck next. 

So even though I’m not yet totally “back”, I wanted to post an entry today with the latest news:  The in-home care workers who “allegedly” robbed us had their arraignment today… and we are goin’ to trial!  🙂

The defendants were each held over with $100,000 bond and spent their day being led in handcuffs from jail to jail!  I hope they had a VERY LONG DAY.  As of writing this, I have not received word of them posting bond.  I hope that their families choose to or are forced to leave them in jail for the next 2 weeks leading up to their February 1st preliminary hearing.  I think a couple of weeks in lock-up would do them some good.  Let them REALLY THINK about what they did to one of the nicest, most loving households in America! 

As I walked into the courthouse this morning, I was calm and all business.  Waiting together in the courtroom hallway with my mom and Uncle Al, we were physically close to AJ and Matt (the two suspects) for about an hour.  I know my mother found pleasure in finally being able to “look them in the eyes”.  I kept to myself.  When our case was called, my family took the front row and I reached in my purse for my good luck charm.  I pulled out my little red teddy bear, Sparky, and Mom and I held hands during the case with Sparky amidst our fingers.  While we all waited for the judge to review their file, the courtroom became very quiet.  In the silence I closed my eyes and said a prayer.  I said, God, if there is yet ANOTHER lesson for me to learn here with this one, then let it be.  But I truly think that the lesson this time is for THEM.  You decide and let the lesson unfold as it should.  With that, I opened my eyes, the case unfolded, and they were held over for trial with a nice sized bond!  Walking out of the courthouse, a small piece of justice seemed to glitter through the gray morning skies.

Part of me is excited that we’re going to trial!  And, without a doubt, part of me is relieved that this was not yet another lesson for ME after the long three-year pile of lessons I’ve waded through.  I’m tired, I’ve changed for the better, I’m clear, I get it.  Let’s move on.  Let’s let ME move on.  It’s time.

With my dad proverbially locked up and now these boys in jail, it leaves me out here FREE and feeling that there is SO MUCH ahead for me to accomplish!  Making my movie, making a difference in people’s lives, making a difference in the world, meeting new friends, reconnecting with old ones, falling in love, discovering new beginnings and – oh, yes – that sensation of adventure and true happiness blended together as one!  Ahhhhh… I can’t wait to have THAT weightless feeling again.

NOTE: Because WDIV-Channel 4-Detroit covered our robbery story exclusively on December 17, 2009, they posted an article update today on their site.  However, because the WDIV website is constantly updated, this story may move again which will make this link invalid:

http://www.clickondetroit.com/news/21998097/detail.html

My dad had a bad night last night (Friday).  He got upset in the middle of the night and started knocking over tables and throwing glasses in the center of the nursing home.  Sunrise called 911 and the police came.  When my dad saw the uniformed police he settled down as he recognized and respected their uniforms and authority.  (I was told today that he said something like he thought he was in a militay / war zone and was defending himself).  In the meantime, my mom was called at 2:30am and she arrived as the police were leaving.  My dad was calm and sitting down when she got there.  She took him to his bedroom and they laid down together.  He was restless, but they both fell asleep around 4:30 am.  When my mom awoke in the morning, my dad was still sleeping so she let him sleep and went home.

Amy, Frankie, Ashton and I got to the center today around 3:30pm.  My cousin Danny Firek was there and said my dad had been doing okay since he had been there visiting.  My dad was in a good mood but seemed tired, and was even less rational than normal.  He was “seeing” a lot more things that weren’t there than normal.  Like when he got on the floor to look at my shoes and said “It’s not fair that this guy (my left shoe) has 3 pillows and this guy (my right shoe) only has one”.  So we agreed that we would have to work that out with them.

We stayed the afternoon and all had dinner together.  After dinner my dad was falling asleep in his chair in his room so I suggested that he get ready for bed and he agreed.  I gave him his toothbrush with toothpaste on it and let him brush his teeth.  When I went back in to check on him he had the toilet seat up and looked like he was going to rinse his toothbrush in the toilet.  I quickly took it from him and rinsed it in the sink.  I then helped him get undressed for bed.  We took off his fleece sweatshirt and underneath he had on 2 undershirts.  We took off his jeans, then a pair of boxer shorts, then a pair of boxer briefs, and we left on his jockey shorts.  (FYI, my dad doesn’t own any boxers or boxer briefs!  Residents “borrow” from one another’s closets unknowingly).  I then put his pajamas on and put him to bed.  He went right out.  As we were packing up to leave he woke up and we all gave him hugs and kisses and wished him a good night.  By the time we left his room he was snoring.

I sure hope he has a restful night tonight!

 
GOOD  NEWS!! 
 
A room has become available for Frank at Sunrise of Northville, across the street from me.  Now I will have to travel 2 minutes instead of 25 minutes each way!
 
Move in day is scheduled for Monday.
 
I’ll let everyone know how he’s doing. 
 
Thank you all for your prayers and support.
 
LY, Fran
 

(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