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

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(Real-time Entry)

I never even got to blog about the birthday trip I had 2 weeks ago!  To give us both a long-needed break, Mom whisked me and her off for my gift, a “Surprise 40th Birthday Trip”– destination unknown!  She told me what to pack but it wasn’t until arriving in Miami that I discovered we were going on a 4-night cruise to Key West and Cozumel!  She also surprised me on my actual birthday with snorkeling/swimming with the stingrays!!  I thought that was a VERY COOL WAY to ring in the new decade!  Her and I look so relaxed and happy in our vacation pictures – it’s been a long time since either of us have been at that level of relaxation and pure enjoyment.

When Mom and I returned home tanned and rested, we drove right from the airport to see Dad at Courtyard Manner… and the Alzheimer’s ride continued FULL FORCE!  Just that morning around 5am… he had smashed out his bedroom window… with his head!  He had cuts and scrapes all over his head and arms and was quite the site.  We even noticed that he’d lost MORE weight just in the short 5 days we had been gone.

Fast forward to last Wednesday (6 days ago)… his head wounds still haven’t healed and totally disappeared.  The hospice nurse referred to this phenomenon as “skin breakdown”.  She said that since he is barely eating or drinking anymore, his body is using all of its available energy to focus on keeping his organs alive.  Apparently, skin reparation is the step his body is now ignoring out of natural necessity.  He also regularly has new scratches on his limbs and back from scratching himself so we are trying to keep his nails short for his own safety.

When I hug him, I usually announce, “I have a hug for you…”, and then while embrace he shrugs his shoulders to hug me back and oftentimes mumbles, “MmmmmmmMmmmmmm…”  🙂  You get head nods for answers sometimes, and sometimes he even pleasantly surprises you with opening his eyes or kissing you on the lips!  A little bit a mumbling/talking a little bit of the time, but not much for speech anymore.

This past Saturday he refused all food and drink for the first time, then Sunday he rallied (see videos below), and Monday (yesterday) he was back to no food or drink.

But how special that Frank Jr. and I have that wonderful Sunday night memory!!  Dad really came out to play!  Way to rally, Daddy-O!

…Today, just 2 days later, Dad is bed-bound, having a hard time swallowing his natural saliva.  He experienced some seizures today while sleeping.  Vallium has now been ordered (he started Morphine Thursday) along with a directive that NOTHING be given by mouth anymore for his own good.  We are bedside full of love…

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!

Hallelujah!!!

My Dad was finally transferred out of Botsford and into his new dwelling at:

Courtyard Manor of Farmington Hills
29750 Farmington Road
Building 1, Room 12
Farmington Hills, MI 48334

(248) 539-0104

He was in the Botsford Hospital Geri-Psych ward for 5 LONG weeks.  It is such a relief to get him out of there!  When he was admitted, he had social skills and interest, you could still usually find a sparkle in his eye, and he had enough energy to want to dance and sing all the time.  Unfortunately, that is not the way he is coming out.

He was supposed to be picked up by ambulance today at 10am and brought to Courtyard Manor.  I was there waiting with my Mom, and around 11am we called the hospital to check on his status.  He had not left yet, so I headed into work.  About 1/2 way to the office my mom called to tell me he was on his way (it figures!).  When I got there, he had already arrived.  (Watch video: AMBULANCE)

When I went inside, he was already in his room.  The on-staff nurse was checking him in when I got into the room.  He was slumped forward and pretty unresponsive.  We tried to engage him in conversations, but mostly, all we could get were some mumbles from him. (Watch video: DAD IN NEW ROOM)

My mom then started to unpack his things, and I stayed with him to massage his shoulders and talk to him.  He has lost soooooo much weight.  I could feel every bone in his shoulders and back.  I told him we needed to start getting some weight back on him and get him back into marathon shape and all he could whisper was “OK”.  He was still pretty unresponsive and sat with his head slumped forward.  I have to be honest, I had a hard time believing that this was really my dad.  I didn’t see any of him in there today and I am very sad.  No one should have to go through this.

My mom told me about a conversation she had with the ambulance drivers before I arrived:

The ambulance drivers told me that everyone at Botsford was hugging him and saying goodbye to him.  The staff told the drivers what a wonderful man Frank is.  They don’t know the half of it.

We got Dad up out of the chair to move when his hospital bed arrived.  My mom took one arm and I took the other, and all he could manage were 1-2″ baby steps.  He was very hunched over, i.e. his spine was almost parallel to the floor.  We asked him to stand up as tall as he could and he only got about 3/4 of the way there, but his head still hung forward.  Once the bed was in, we sat him down again.

My mom sat with him for a while and tried to comfort him.  If you look, you can see in this video that this is very emotional for her as well.  I just hope she continues to have the strength to get through this.  She doesn’t like to ask for help and she usually turns me down when I offer.  So I think we all should probably just insist that she let us take her out and help her get her mind on some other things.  (Watch video: MOM AND DAD)

I left a little before lunch and my Mom stayed with him.  She told me he had a good lunch, used the bathroom, and then went to bed.  It had already been a long, tiring day for him.  On my way back to the office I realized I was hungry so I stopped at Greene’s Hamburgers in Farmington.  Greene’s was a hangout of my Mom & Dad’s when they were in school and dating.  They also had their Surprise 45th Wedding Anniversary Party there just this last August.  Man, it is so hard to believe how much worse my Dad has gotten in just 7 months since that party!!  It takes my breath away just to think of it like that.

My mom said the nurse at the Nursing Home said they may try to reduce some of Dad’s meds to see how he reacts.  I am very interested to see the results of this.  What I would actually like to see is what he would be like if we took him off of all his meds for a week.  I can’t help but wonder how much of his current degradation is drug induced, and not a result of his Alzheimer’s.  But I guess I may never really know the answer to that one.

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)

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?

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)

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)

Two better days in a row now for my dad – plus last night he was given a sleeping pill which seems to have allowed him to finally get some much-needed rest!  Thank God.

You know, this disease is so interesting in that you’re never sure what you’re going to find when you walk into the room with him.  Just two months ago in November, Dad was starting to have trouble with some immediate family members’ names and faces.  The bottom of the pit was when we introduced himself to my mother twice.  And he had begun calling me by my brother Todd’s name on occasion.  Sometimes he’d even ask me in mid-conversation, Where’d that girl go that was just sitting here? The one with the black hair?  Where’s your sister?  Tell me when she gets back because I have something important to tell her…

But magically sometime in December prior to Christmas, he snapped back a few notches and – even despite the confusion and trauma he’s gone through at the nursing home this past week – he still continues to know WITHOUT A DOUBT who I am, my mother, and my brothers!  It’s a miracle and a gift! – albeit a temporary one, I know. Regardless, we’ll TAKE it!  🙂  It’s so exciting for me that Dad is currently funneling through ALL of the different nicknames he has for me, referring to me just last night as “Shmoe” (aka Joe the Shmoe).  When I left the table for a few minutes, I was told that he turned to my cousin and asked, Where’d Shmoe go?  It’s so cute and playful and I am so bloody thankful every single time he does it! 

We’re not sure sometimes if Dad knows every friend and family member who visits with him but it is amazing how, even on days when he doesn’t appear to know someone by name, he still knows what people are associated with that person!  For example, my cousin Karrie didn’t think Dad knew who she was last night when she visited, but Dad kept talking to her about “Bill” (her husband), recounting some real and some made up stories about his interactions with Bill.  When our family friend Joyce visited Dad at our home around Christmastime, Joyce was positive that he no longer knew who she was yet he kept talking to her about “Kathy” (my aunt and Joyce’s best friend)!  On Dad’s first full-day at the nursing home, when we visited him with my Aunt Kathy in tow, Dad called her once by her full name (which pleased her greatly!) and then proceeded to tell “Jack” stories (her husband).  He’s a very smart fellow and it is fascinating to see the brain at work and which parts still connect on some days. 

Probably because Dad’s last two days have been better and less emotional for him, my past two days have come with some emotional relief as well.  On some emotional purging expedition, I even went and cut off my hair!  I literally put my head in my hairdresser’s hands after making it VERY CLEAR that she couldn’t cut it TOO SHORT or else I might risk confusing my dad.  I want him to recognize me for as long as humanly possible…

There were a few good signs yesterday at the nursing home.  First, I think Dad barely cried.  Secondly, when my mom walked into his bedroom after he had awoken from his nap, she found him standing dressed at the foot of the bed not upset.  He said, Oh, hi, honey!  She noticed that he had removed a framed photo from the wall of her and him in Hilton Head with their favorite band, The Headliners, and it was now peacefully resting on the window sill.  I would like to think that this means that the photos I hung the other night are making a difference for him, that he’s noticing them and perhaps they’re part of what’s calming him when he awakes.  Thirdly, when I arrived last night after dinner, Dad was happily sweeping the dining room floor!!!  Sweeping was a chore he did regularly at home.  I believe this is a sign that he has begun to place pride and ownership in his new surroundings and – in perfect Frank Firek style! – he wants to help out and be of assistance.  He is amazing and it always moves my heart to see him in action like the old days!  Of course, he paused when it came time to figure out the dustpan and he was much better at the sweeping aspect itself.  But in a playful way, he purposely banged the broom against chair legs and wheelchair wheels while he was sweeping, and he jokingly said to the ladies sitting in those chairs, Oh, I’m sorry, was I bothering you??  🙂

He has made a new friend at the home.  Her name is Carmen.  The two positive attributes of Carmen is that she giggles non-stop at everything (so Dad thinks he’s pretty funny!) and that she is an opera singer with a beautiful voice.  It’s great to see her sing and Dad dancing around her!  Music and humor are still two big ways into his heart and they always lead him to his happy place!  I’ve seen Dad kiss Carmen on her hand a couple of times but, then again, which lady doesn’t he do that to?  🙂  Last night, he kissed Carmen on the hand and then he immediately turned to my mom and kissed her on her hand!  What an interesting trio!

My mom and my brother Frank Jr. met with the nursing home director yesterday afternoon, one week into Dad’s stay.  The director was describing how many people get dropped off at the home and then have very few visitors throughout their stay.  Then he commented on how incredibly close our family appears to be and how he can tell that Dad’s moods seem to be directly related to us and his interactions with us.  He is pleased that we are there nearly around the clock during Dad’s waking hours to help him with his transition.  He also suggested that Dad’s violent outburst his first night at the nursing home wasn’t as bad as it sounded and that they’ve never witnessed any behavior even close to that from him since.  Then he suggested that we might want to attempt soon to take Dad out for a day trip to someplace familiar!  So, this Sunday, Dad is going to spend the day at Frank and Amy’s playing with his grandkids!!!  We are SO excited!  A week into the transition, with his meds re-adjusted and his good mood back, maybe we’re at a turning point here.  That would be such a blessing and a relief!  There’s nothing worse than watching a loved one in pain.  I’ll take his smile over tears any day!  xo