FSAlz needs votes by this Sunday to be considered for a $250K grant! This money will help us further develop our
caregiver support website, video web series, and pending documentary!  We can’t wait to share with you even more of our video and caregiver experiences!

Vote for FRANKLY SPEAKING: ALZHEIMER’S at www.missionsmallbusiness.com

You have to sign in via Facebook and can only vote for us once. Votes must be cast by the end of Saturday, June 30, 2012.

We appreciate any and all support you can give, as we truly look forward to supporting you by sharing more of our footage and caregiver experiences! Peace to all.

INSTRUCTIONS FOR VOTING:

1.) Go to: https://www.missionsmallbusiness.com/

2.) Click: “Log in & Support” under the section: LOG IN TO FACEBOOK TO SUPPORT YOUR COMMUNITY (NOTE: you have to sign in via Facebook to vote)

3a.) Enter: Frankly Speaking: Alzheimer’s BE SURE YOU INCLUDE THE PUNCTUATION (: and ‘s) I’d suggest cutting & pasting the name from this line.

3b.) OR search by State and City–Michigan, Troy DO NOT include the company name. Frankly Speaking: Alzheimer’s is located on the 3rd page….not in alpha order.

4.) Select: Vote/Support

PROBLEM: Dad has been forced into early retirement and is now struggling with all the newfound time on his hands.  Due to diminished mental capacity, he can’t just hop on the computer or start up a new task, and he is frustrated.

SOLUTION: Coming to terms with the problem.  My dad is trying to forgive himself and the current circumstances which no longer allow him to do things he used to be able to do.  Him personally acknowledging his limitations is the first step in him accepting this new reality; voicing his frustrations is yet another step closer.  Undoubtedly, his acceptance of his current conditions will vacillate and the struggle will be ongoing.

PROBLEM: I feel unable to help him.

SOLUTION: Listening.  Giving the person with Alzheimer’s an opportunity to express their emotions and frustrations is gracious and kind and valuable.  Even though listening might not offer a direct solution to the problem at hand, it gives the person with Alzheimer’s validation that they are important, that their life is worth living and talking about, and it reassures them that we are listening and will be their advocate in the coming days.  Uncovering how they feel and why will be key in helping you make decisions in the future that are based on their wishes and attitudes about life and about death.

PROBLEM: I realize that while Dad is already depressed and dealing with his imminent demise, he has been forced to stare death in the face while watching one of his best friends die. I am trying to understand Mom and Dad’s mix of complex emotions at this difficult time.

SOLUTION: Just ask.  Instead of wondering and tiptoeing around the topic, I simply created a warm, safe environment in which my dad could say anything and then invited him to share his deepest thoughts.  Importantly, the rules of this disclosure process are that there are no wrong answers and anything goes – total freedom for my dad to share without consequence.

SOLUTION: Five Wishes.  This universal palliative care list of five questions helped my dad contemplate and decide how he wanted the end of his life to go, plus it gave him and my mother an opportunity to make decisions together and forge a bond that would become our family’s guiding force as the stages of Alzheimer’s progressed.  Behind closed doors with a doctor, they discussed such things as living at home vs. an assisted living community to the very open-ended question of What do you want your loved ones to know.  These five questions opened the flood gates of free-flowing communication within our family – a process which has finally given my father some feeling of control, some peace of mind, and has gotten us all on the same page so that when decisions need to be made in the future, we can use Dad’s answers as our reality check.  These are his Final Wishes.  Our goal is to honor them.

Five Wishes:  (click here for sample)

• Who you want to make health care decisions for you when you can’t make them.
• The kind of medical treatment you want or don’t want.
• How comfortable you want to be.
• How you want people to treat you.
• What you want your loved ones to know.

Death is in the Air – VIDEO TRANSCRIPTION

Joleen: So what I wanted to do as an experiment is sort of talk to you guys about what’s going on in the head and the heart about this stage of your life and your diagnosis and, you know, what’s going on for you day to day.  And whoever wants to talk, I’ll just kind of follow the action.

Fran: It’s your story.  You start.

Frank: It’s my story?  Okay.  Well, it’s a precarious position that I find myself in.  It’s not something that I had uh– I don’t think anyone thinks about the future as far as how they might find their demise, how they may end up.  Through some tests that have been run at the University of Michigan on a few different occasions, we’ve been diagnosed with Alzheimer’s, which is a degenerative disease of the brain, and my brain is basically dying.  And today I’m feeling pretty good, I’ve been surrounded by family all day, this is cool.  But the truth of the matter is I’m not gonna get any better, there’s no cure for this thing.  And so I’m at peace with it, I don’t like it at all but I’m at peace with it.

Joleen: And you had a good friend pass away today.  What is that doing to you, Daddy?  Is that eating you up a little?

Frank: No, I’m relieved.  Visiting with him, my brother-in-law Jack, in the hospital several times over the last couple weeks, spending many hours there, I was saddened for him being in that state, and also saddened for the family and all the friends that were there.  They all wanted to be, and so did Mom and so did I want to be there with him, but it’s certainly not that we wanted him to be in that position.  And so I’m sure that people are gonna have the same attitude, I would hope, for me as well, that they love me dearly and they’re going to miss me, but it’s going to be a tough road because this is a long slow process that we’re going to be going through.

Fran: It was really difficult because Jack was in the hospital for two weeks, and the last week that Jack was laying there, he wasn’t in a coma but he did not know basically what was going on.  Very seldom he’d wake up and mumble something.  He’d be breathing and then he’d stop for ten seconds.  And then he’d start breathing again and then he’d stop.  And it’s like, you’re just waiting there like, okay when’s he going to die?  And after a week it was a really long drawn out process.  And Alzheimer’s will go on a lot longer.

PROBLEM: Everyone is depressed and uninspired

SOLUTION:

Turn the crisis into an opportunity.  After spending months as a useless sobbing wreck, I decided to empower myself.  Based on the unique skill set I personally have, I decided to videotape our lives and put it to use to help others.  Of course, simultaneously caregiving, coping AND videotaping/editing is overwhelming, but the important part is that it gives me something POSITIVE to FOCUS ON!  Knowing that some good will ultimately arise from this ongoing tragedy helps me push through some of the bad days.

Create a meaningful project together. Recording my documentary means involving my father, and I remind him often that he is the STAR OF A MOVIE who is helping MILLIONS of other people!  This meaningful reminder inspires him and gives him purpose and confidence!  Brainstorm about something meaningful to your loved one that you could turn into a project together.  Simply ask friends and relatives to share photos for a scrapbook you’re going to make about their life; or record oral history of your loved one before it’s too late; or plant a garden in their honor – allowing them to help you with it for as long as they can, including taking strolls through it together; or collect sheet music of their favorite songs and make a music book from which you can later play them their favorite music; or make a cookbook of their favorite recipes – from which you can make them their favorite comfort food when they’re down, plus pass it down through the generations…  There are endless ways to celebrate their life by creating a meaningful project – with them or for them!

Voila! – a Movie is Born – VIDEO TRANSCRIPTION

Frank: Hi.

Joleen: Hi!  You’re having a good day?

Frank: Having a good day.  Yea.  Yep

Joleen: You weren’t having a good day maybe the last two days.  When we talked as a family two days ago, we watched that movie and talked about you being sick, you were sad.

Frank: Oh yea.  Oh yea.  Because I know what’s ahead of me and what’s ahead of the family and, most dear to my heart, what’s ahead of my wife, the stress, frustration that she’s going to have to go through.

Joleen: You said you felt empty and lethargic and on your run you just stopped after a quarter mile, and that’s so not you.

Frank: Yea.

Joleen: And I was talking to Jac, my best friend Jac, you know her, and she said, “You know, Joleen, with all of your skills and talent, you should be doing something with this that’s really from the heart.”  She said, “And the last five months have been focused on your dad’s illness and him being sick and the Alzheimer’s and the negativity and the end of things.”  And she said, “You have the power to turn it around and to make it a celebration.  A celebration of the strong wonderful family he and your mom have built over the years out of love, celebration of his accomplishments, and to celebrate him as a person and his ability to teach others and help others.  And turn it around.  Make that negative energy spin into something positive that will continue on forever.

Frank: Wow.

Joleen: You’re such a helper and you do so much for people, and I feel like you have to give that up right now.  And that’s not really who you are.

Frank: Nope.  And without that I’m a bit lost.

Joleen: Well, I have an idea.  It’s an experiment.

Frank: Okay.

Joleen: I would like to, as a Writer/Producer/Director, I would like to do a documentary of our family and our life, your life, and what you’re going through as you go through it, and I would like to distribute it to families in the future and help them understand what goes on with the family and the network, what goes on from someone with it in their head and their heart, like the true details to help people to deal with it.

Frank: Um, that’s awesome.

Joleen: And I think you can be a hero forever and ever.

Frank: Well, maybe I can give some people some hope or something like that, and certainly help them to continue their love for one another ever though it’s going to be a struggle.

Joleen: I just needed to come and help us do some good.  And make it seem like maybe there’s a point to your illness.  Maybe this is really for a reason.

Frank: Wow.  We could help other people.  Yep.  Where do I sign?

[KISS]

Frank: That’s it?

Joleen: Right there.

Frank: I’m signed up?

Joleen: Yep.

Frank: K.

Joleen: Okay.  Love you.

Frank: Wow.

[HUG]

PROBLEM: Coping with an Alzheimer’s diagnosis

SOLUTION:

Openly communicate the news with others.  There is a certain stigma that goes along with Alzheimer’s – people aren’t sure what to say or how to act around you… and so they unfortunately avoid you altogether in order to avoid uncomfortable situations.  We have found that by openly sharing the diagnosis with others (family, colleagues, neighbors, country club members, mailman) and taking time to explain the disease, people are much more comfortable around us.  It keeps the lines of communication open vs. the alternative of not knowing what to say and so therefore never saying anything at all.

Use humor to break the tension.  Alzheimer’s is a very serious topic, but our family was determined not to allow it to make our life somber 24/7.  Our family naturally uses humor as a coping mechanism anyway, and so we used humor as a tool to break the iced during stressful times, albeit expressing how helpless we felt, how sad we were, or how much this truly sucks.  Making jokes about it doesn’t automatically mean you’re not taking the diagnosis or the situation seriously; it simply means you’re trying to swallow this large sour pill with a smile on your face—which can have contagious magical powers, replacing the frowns around you with smiles as well.  Humor and laughing can benefit everyone—as long as they’re open to the possibility that laughing doesn’t equate insensitivity.  In our family, we always welcome a good laugh through our tears in order to help numb the sting.

Turn the crisis into an opportunity.  Our family decided to use our Alzheimer’s experience as a way to educate others about this harrowing disease, to use our fortunate family dynamics to demonstrate how love can help conquer fear and how there is power in numbers.  My dad, my mom, my brothers, myself… we could have all locked ourselves in separate rooms (physically and/or proverbially) and claimed pure denial.  But there is no power in that.  We are a lucky family blessed with loving, functional relationships (for the most part-LOL).  We cling to one another for support, for understanding, for sanity, for dear life.  We use each other as a sounding board.  No one goes through this process the same way or on the same timeline, and so there is a lot of give and take to be had if you’re open to it.  We prefer to have death bring us closer together instead of letting it rip us apart.

Openly Discussing the Diagnosis – VIDEO TRANSCRIPTION

Fran: I think Frank and I know each other better than a lot of other couples.  We met in high school when I was 14, started dating when I was 16, married when I was 19 and have been married for 44 years.  It’s almost impossible for me to believe that a day will come when the Frank I have known practically all of my life will change into someone I hardly recognize.  Worse yet will be the day when he won’t recognize me.  Our rollercoaster ride began when Frank was diagnosed in April of 2007 with early-stage Alzheimer’s the day before we left on our dream trip, 2 weeks in Greece.

Frank: That night, we called our children, brothers, sisters, and closest friends – and one by one, we would tell them the news.  Naturally, they all were very sad, but you know what?  Most of them were not surprised.  We made a decision from the very beginning, not to hide from the diagnosis – not to keep it a secret – although clearly we’ve never told our story to as many people as we’re doing today. (laugh)

Fran: He tries to stay upbeat instead of letting Alzheimer’s beat him down.  He’ll tell people, “Yeah, Fran has a sore back so I help her out.  I lift the heavy things, do the gardening and the grocery shopping.  She tells me what day of the week it is.”  Together, with one good body and one good mind, we make one heck of a partnership!

Frank: I’m thankful that Fran and I can share our story with you.  And we, along with all those affected by this disease, are tremendously grateful that there are wonderful people like you who help to ensure that no one with Alzheimer’s disease walks alone.  Thank you.

PROBLEM: The system seems beyond our control!  Mom and I are trying desperately to find a back up place for Dad to live, as we have a sneaking suspicion that his Assisted Living Community is about to tell us that he can no longer live there after his recent bouts with violence.

SOLUTION:

Plan ahead.   Even though we aren’t sure yet if Dad will or won’t be welcomed back to his assisted living community, Mom and I are planning ahead.  We always try to come up with at least two contingency plans because as we’ve learned often times your backup plan needs a backup plan!

Partner with Someone.   My mom and I took the problem on together.  As a team, we were able to call twice as many people, plus we individually toured assisted living homes to speed up the process, only bothering to call the other person if the place was worth seeing.  Also, in the middle of an emotional crisis, you don’t always hear and retain all the information you gather so two heads are better than one.  Plus, when I’m feeling beat or angry, she pulls me up – and vice versa.  A buddy system is a beautiful thing!

Geriatric Care Manager.  Also known as Care Advocate/Senior Care Expert/Care Consultant, I highly recommend this role for hire if you can afford it.  We chose NOT to go this route and ended up regretting it terribly. Care Managers are designed to hold your hand throughout the illness and guide you, helping you plan ahead and handling crises as they arise.  They are knowledgeable about which homes in your area are best suited for your situation and about other detailed minutia that is impossible for everyone to know.  Visit http://www.caremanager.org/ to find an accredited NAPGCM professional in your geographic area.

Nowhere to Live – VIDEO TRANSCRIPTION

Joleen: Um, we met with Dr. Parris for a full hour this morning.  He said they haven’t successfully been able to find the proper combination of medications to bring his violence under control.  He still is lashing out at least every four days.  And he mentioned perhaps a frontal temporal (lobe) dementia and maybe in addition to Alzheimer’s or instead of Alzheimer’s.  He said he just isn’t processing and he’s degenerating very quickly which is very surprising.  In just the last 5-6 months he’s just unrecognizable.  Um, so they said that their only hope is to drug him up so much that he can’t do anything let along be violent so that some home will take him back.

Assisted Living rep: Hi, how are you, Fran?

Fran: I’m hanging in there.  What’s up?

Assisted Living rep:  Well, I wanted just to speak with you.  I did speak with Dr. Parris several times this week, and we did go and see Frank a couple times also.

Fran:  Uh huh.

Assisted Living rep: And at this time, you know, taking into consideration Dr. Parris’ opinion and certainly our experience, I don’t think he’s going to be able to come back.

Fran: Okay, that’s what I was expecting.

Assisted Living rep: Yeah, and I, it’s with a very heavy heart that I say that, but with speaking with Dr. Parris he just has real concerns that they haven’t been able to find something to make his behavior more predictable.

Fran: Right, right, I understand.  Well, I will come over sometime this weekend hopefully and clear his stuff out.

Assisted Living rep: Okay.

Fran: All right.

Assisted Living rep: All right.  I’m very sorry, Fran.

Fran: Okay.  Well, I understand.

Assisted Living rep: All right.  Thank you.

Fran: All right. Thanks. Okay.  Bye bye.  [hangs up]  (sighs)

Joleen: All right, well, all of this, you know, Don’t worry about it, we’ll get his meds under control, he’ll be able to go somewhere, at this point it doesn’t look like any body’s prepared to take him.  (sigh)  I don’t understand what the system expects us to do now.  I am going to go clean my dad’s room out at Sunrise since they just basically kicked him out.  So they’re telling me that there’s millions of people in this country that are dealing with the same thing with Alzhheimer’s.  So out of millions there must be thousands and tens of thousands dealing with our shit of getting kicked out and things.  What do these people do?  I have to go online to find out.  It’s unbelievable.  (sigh)  My God.  Three years of frickin’ research out the window.  Now where’s he gonna live?  (sigh)  There has to be a better answer.  There has to be an answer for people like us.  (sigh) There’s gotta be a place in this country for us to go.  There’s gotta be a place for my father to go.  (sigh)  God, this system sucks.

PROBLEM: Violent Outbursts – Pushing and Shoving

SOLUTION: Change the scenery to divert their attention.  When Dad began pushing and shoving at his assisted living home, it wasn’t clear why he was agitated. The staff successfully used the tactic of removing Dad from the community living room (where there were other people and a loud TV), placing him in the safe confines of the Director’s office where they kept company with him by talking to him softly, making him comfortable, and giving him one of his favorite simple pleasures – chocolate!  Dad was able to focus on the chocolate, which gave him a distraction and great pleasure simultaneously.

PROBLEM: Trying to find a way to connect

SOLUTION: Pay attention for the little clues.  Dad was very despondent and confused when I arrived.  We interacted and connected some, as I used the technique of speaking softly and happily in his ear.  Ultimately, I wanted to draw him outdoors today, as the sun was out and I knew he would love to feel it.  As I physically led him slowly outside by the hand – with his eyes closed and feet shuffling – my cell phone rang… a piano riff ringtone!  Dad instantly emulated the noise, “Daaa Na-Na-Na Nuh!” and shuffled a bit faster.  Realizing he was connecting with the music, I grabbed my phone as quickly as I could and started playing an oldies song.  Viola!  He started coming back to me from the fog he was in!  I danced and stomped my feet so that he could hear me dancing with him (since his eyes were closed).  I gave him words of encouragement and praised his dancing.  And, very importantly, I filled in the lyrics for him when he drifted, which gave us an amazing opportunity to reconnect and “build” something together… a new memory for me… a happy moment in time for him.  I love to meet him where he is and enjoy the moment on his terms!

PROBLEM: No interest in drinking fluids

SOLUTION: Find ways to get them excited about drinking – or go into stealth mode.  Dad isn’t a big fan of drinking water – never was – and so it’s up to us to put a glass of water in his hands throughout each day and encourage him to sip.  Of course, using the excuse, “Here, why don’t you wash that chocolate down with this” always works!  :)  However, I personally have found that sips spread out over time are easier to sell him than drinking a full glass in one sitting.  I have had success with different strategies… sometimes while dancing, I’ll hand the glass to him… he’ll sip… Ill take the glass away… and then I’ll slip it back into his hands a few minutes later, saying something encouraging like, “Mmmmm, this is amazing Daddy-O.  Try this…”  Always a social guy, he typically likes to participate in whatever you are doing.  :)

From the Fog to the Dance Floor – VIDEO TRANSCRIPTION

Joleen: Uh oh.  Dad’s like in the principle’s office!  Daddy, it’s JoJo.  Hi, you been a good boy?  They gave you a candy bar?  Oh my gosh, I think that’s a Snickers!  Yummy.

Frank: It’s my first candy bar in 3 years.

Jim: I hear your favorite’s Kit Kat.

Joleen: I gave you a Kit Kat last week.

(Voice off camera): Hi, how you doing?

Jim: Great, how are you?  He’s had a little pushing and shoving today.  Not, not bad, I mean it wasn’t terrible, but he’s aware of it.  He said he knew that he was doing it, but that’s why I brought him in here, I’m trying to change his mood a little.  Frank, here’s a water.

Frank: Yes, but where are you?

Jim: Come here, I’m sorry.  I’m right here.  Right here.

Frank: It’s okay.

Jim: Here’s the cup.  Can you feel that?  Whoops.  You want to grab a hold of it with your fingers.  You got it?

Frank: Yep!

Jim: Were you gonna go out for a walk?

Frank: If you’d like to join us, you certainly are –

Jim: Actually, I have to run down to the other building real quick, but I’m sure you can enjoy the walk with your daughter.  It’s a beautiful day out there.

Frank: Either one is fine.  Or with you, or with your daughter.

Joleen: How about with JoJo?  You wanna go for a walk with JoJo?

Joleen & Frank: (sing) Sweet nothing… Oooooh sweet nothing… (music)

Frank: You got it, Jo. (sings) Cmon here darling, that’s enough for tonight.

(music) Sweet nothing…. Sweet nothing…

Joleen: That was a good job, Daddy.

Frank: Oh, thank you, girls.

(music) My baby gave me that special look…

Joleen: Whew!  Whew!  Nice twirl, Daddy-O!  Ohhh, there you are!

Frank: Where’d you come, come from?

Joleen: (kiss) Where I’d come from?  (kiss)  I came from your heart!  Whew – he’s alive and shaking!

(music) I’m sittin on my front porch…

Frank: Well, you ain’t nothing but a hound dog crying all the time, crying all the time, you ain’t nothing but a hound dog, washing all the time…

Joleen & Frank: Well, you ain’t never caught a rabbit and you ain’t no friend of mine.  Ba ba ba ba ba… Sing it boys!  Ba da da da da BOMP BOMP!…