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’ve plunged back into the working world as of 3 days ago and find myself moving along at a fairly decent clip, all considered.

Prior to that, I was like a wounded animal limping through the haze.  Those first few weeks after losing Daddy-O were foggy, painful and just plain surreal.  It’s weird when your world instantly loses one of its constant beacons; you lose your way and have to numbly find your way back to reality – albeit a new, revised reality.  And then you have to get used to that new place.

Nine days after the funeral, during this hazy process, my roommate and I escaped to Vegas for a quick getaway.  Quite frankly, looking forward to that trip actually helped me get through the funeral proceedings in the first place.  Then, once in Vegas, I distinctly felt myself disconnect from the regular drama of my life, and I was thankful for the tangible, much welcomed and much deserved break.  I figured I would get back to mourning a few days later once I touched back down in Detroit.

Surprisingly, though, back in Detroit, I discovered that I had healed a lot between Vegas and home.  Maybe it was the onslaught of neon lights and casino noise or the cool drinks and cloudless skies or simply the fact that I was nowhere near home and so no one knew I was mourning.  Whatever it was, I was able to act normal and literally be carefree for the first time in years!  It was an amazing sensation.

When I returned home to Detroit I found myself shocked – and then saddened – when I realized I had actually somehow recovered beyond my expectations in that one short weekend.  I suppose that after 3 years of pre-mourning the loss of my dad, I was somehow, somewhere deep inside, more prepared to move on than I thought.

That’s not to say that I don’t miss him LIKE CRAZY and sometimes still cry when I think about him!  The difference I’m speaking of is that I can talk about him sometimes without crying – which, I believe, is quite an amazing feet.

When I consider that my family and I could have been dealing with my father having this horrible disease for another DECADE – like millions of families do! – it absolutely blows my mind.  I have NO idea how people survive years and decades of this heart-wrenching disease.  I suppose that’s exactly why 40-percent of Alzheimer’s caregivers die before their failing loved ones.  I mean, seriously, WHO can take all that??

What I have now is scattered feelings: I feel blessed to have been Frank’s daughter, I feel sad because I miss him, and I feel lucky to have been released from this madness.

I find myself listening to oldies music at every possible opportunity – in the shower, in the car, while working.  The music feels like my last tangible connection to him.  Like, if I just smile big enough… and sing loud enough… and think happy thoughts enough, maybe Daddy-O will shine down on me, smile, and dance back…

(NOTE: Frankly Speaking: Alzheimer’s subscribers didn’t receive an email alert upon my last blog entry a few days ago for some reason.  If interested in reading that entry, scroll down one entry on my website to read my dad’s amazing eulogy as delivered by my cousin, Karrie [McLean] Martin.)

FUNERAL ARRANGEMENTS:  Viewing: Monday, May 3, 1-8 PM.  Funeral service with Military Honors: Tuesday, May 4, 10 AM.  Location: The Heeney-Sundquist Funeral Home, downtown Farmington (www.heeney-sundquist.com).

Suggested memorial tributes to Alzheimer’s Association – Greater Michigan Chapter (www.alz.org/gmc) or for use in completing the movie, Frankly Speaking: Alzheimer’s™ – The Documentary (www.FranklySpeakingAlz.com).

(Real-time Entry)

Somehow the air seems so still these past few days.  A fog shrouds me at times, but inspiration from my dad forces me to keep moving and take action.

(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.

(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…

(Real-time Entry)

Life goes on for the family outside of Dad’s 4-walls, but we always get back to him as soon as humanly possible and we are spending a lot of time there this past week.

In an effort to squeeze in meaningful visits and let him know he’s not alone, my immediate family has begun taking shifts around the clock at Dad’s home. I personally believe that Dad knows how much he is surrounded by love, even if he is sometimes physically alone, but there is no harm in someone being there all the time to speak lovingly to him and hold his hand or scratch his back.

Some loving cousins and uncles have volunteered to take shifts in order to help out, which makes me realize that I should mention to everyone out there that if you’d like to visit Dad, please just let me know.  This would allow one of us to take a break.

Of course, you never know how long this process will take and so we’re just doing what we can – from the bottom of our hearts.  I do truly believe my dad is still steering his own ship and he’ll let US know when it’s time.  🙂

P.S. Another blog entry with more video to come tonight…

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!

It has been nearly 2 weeks since Dad was discharged from Botsford Geri-Psych and was relocated to a new home specializing in Assisted Living for Dementia, Courtyard Manor of Farmington Hills.  This place has proved to be special and every single person working inside its 4 walls appears to be very loving, genuine, patient and kind.  It does my heart and conscience well to be able to trust in them and their facility and the approach philosophy they have for Dad.  During Dad’s violent outbursts, the staff reacts with loving words, kind suggestions and  one-on-one friendship.  I really see a place like this working well, where the dignity of the patient is ALWAYS first and foremost.

The confidence I have in the home has allowed me to relax and step back, knowing that Dad’s in extremely capable hands.  This transition has given me permission and space to focus again on myself and not to worry if I don’t get to see Dad every other day.  Every 4 days or so seems to work out just as fine for both him and me from what I can tell so far.  And he’d be happy to know that this break has allowed me to get my work life kickstarted once again.  I already feel so much more complete and just overall SO much better!!

This is also the perfect time for Mom and I to transition into a VERY WELL-DESERVED vacation getaway to somewhere warm!!!  In just 3 short days I will be turning 40 years old, and my mommie and I will be off flitting around on a beach or a boat somewhere tropical (she planned the trip as a surprise destination for me!), just the two of us, cut off from the drama of back home, getting to know ourselves again and truly being able to unwind.  Ahhhhhhh… We SO deserve this trip!

The attached video is from one week ago.  It contains footage from 2 of my visits to see Dad over the same weekend.  You will be blown away by how he can be nearly comatose at one moment and then dancing the next!  You truly NEVER know what you’re going to get when you open that door.  And when there’s a special day waiting there for you, on those rare days when you get to look into Dad’s beautiful blue eyes, especially on the days when those eyes have sparkle and life in them! – THOSE are the moments we’re cherishing now.  Each little joke, each dance step, each connection is worth a million dollars in gold…  

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.