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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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!  🙂

(Real time entry)

It’s 11am Saturday morning and Dad has been “sleeping” for 38 hours now.  He fell asleep at 9pm Thursday and we haven’t had an interaction with him since.

…But WHAT a last day we had!  J  Daddy-O just couldn’t stop dancing and giving all of his visitors one last amazing day!  How he was STILL going and able to stand (sometimes for 40 minutes at a time!!) with no food or drink for 4 days… what an amazing spirit he is!

Sparky is by his side.

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.

(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!

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?