Love – Another Anniversary

This morning my husband asked me if there is something I needed to tell him or ask IMG_0679him.  It was before my first cup of coffee.  The mental cylinders were not firing.  My reply was, “Nope.”  This is a common guessing game my husband plays with anyone willing participate.  It’s part of his brain disease.  He then reminded me it was our anniversary.  He remembered, and I didn’t.  Ironic.

Nineteen years ago today we stood in front of friends and family in the gigantic Cadet Chapel at West Point and committed our lives to each other.  I completely forgot it was today.  My brain was swirling with the daily tasks of getting our three kids up and off to school, looking in my teenage son’s throat to assess the level of soreness, hunting lost shoes, loading the dishwasher, and calming the six year old melting down because mommy said, “No YouTube before school.”  Yeah.  I mean like that.

At my husband’s reminder, my thoughts immediately shifted to 19 years ago.  What was I doing that morning?  No idea.  What were my joys and fears?  Distant memories.  What I do remember is our vows.  Our commitment to each other.  Love.

My understanding of love has changed in nineteen years.  It’s no longer the simple shared emotion of young people with a life full of promise, the wonder at starting a family.   It’s not a Hallmark movie where the main characters share a cup of Joe in the local bookstore making ogling eyes at each other.

It’s trust, acceptance, tolerance, patience, and commitment.  It’s honoring for better or worse, in sickness and in health.

Our love may not resemble yours.  That doesn’t make it wrong.  My husband is no longer the same man I married.  He has changed in every way.  So, it is a new love that has evolved.  There is an absolute hate for the disease my husband has.  Every stinking part of it.  But, I still love the man.  The man he once was.  The man he is still desperately trying to be.

So, when you see us out and about, things may look tough.  Tones may not be exactly right.  Frustrations may be overflowing.  Know that the foundation of us is still love.  We’re a couple and family trying to navigate a very challenging disease.  One that impacts memory, behavior, and physical changes.  One that gives the appearance that the impacted is perfectly healthy.  One that pushes the caregiver to the edge, often.  One that robs the afflicted of emotions.  So, one of us grieves.  One of us carries the weight for both.  It’s ok.  It’s love.

Advertisements
Posted in Uncategorized | Tagged , | Leave a comment

Circle of Life (the great unknown)

Cleaned up eyes openSixteen years ago today, my beautiful first-born son came into the world.  He was an enormous 9 lbs 1 oz baby.  He never seemed fragile almost toddler like from the beginning.  At only a day old, he found a way to un-swaddle himself and kick the covers right off.  He’s never liked being hot running his ceiling fan year around.

Being a mother was never a goal or dream of mine.  Actually, I thought for most of my younger life that I never wanted to have children.  They were needy creatures.  I struggled to manage myself.  How could I possibly be responsible for another human being?  At 31, the proverbial clock started ticking – with vengeance.  Every baby was adorable.  My need to hold and cuddle the little beings was painful.  It was time.  And, despite my husband’s hesitation, I insisted that we start a family.

Pregnancy came easy.  I loved the attention and my changing body.  Every appointment with the midwives was exciting.  It was going to be a boy!  Boys are my favorite (sorry girls).  There was a small scare during the pregnancy with too much fluid surrounding the baby.  It was a month of worry that the baby had Spina Bifida or some other life altering condition, but all was ruled out at the following ultrasound.

There was a nagging little thought that never left my mind.  My husband’s father had “early onset Alzheimer’s.”  The doctor’s didn’t have it exactly right, but it was close and the best guess at the time (mid 80s).  I feared that perhaps my husband may end up with the same condition.  We were older parents starting in our 30’s to have children.

Our boy was born October 7, 2002.  It was a difficult delivery but the miracle of giving birth far outweighed the physical and emotional discomfort (see the birth story written in 2002 at the end of this post).  A nurse at the hospital commented that “this one was special.”  Of course he was.  He was ours.  We loved him instantly.

Fast forward to 2018.  My first-born is turning 16.  From the day he came into this world, I feared the day he turned 16 and began driving.  Teenage boys lose their minds behind the wheel (and in many other ways).  But, this day has become even more significant over the last year as my husband is no longer able to drive our children (three boys).  I need another driver.  He is ready.  He needs to escape the chaos of our home at times.  His father, my husband, has a degenerative, terminal brain disease.  It is called Frontotemporal Dementia.  It is cruel.

So, this week, my husband, who has lost much of his sense of judgement and some of his memory especially for new information, decided to berate my oldest about how he was handling his disease.  My husband explained that his own aunt had the disease, his own father had the disease, and my son could have it, too, because it is hereditary.  Now, this is information that has not been kept from my kids but certainly managed and navigated carefully up to this point.

It took 5 minutes for my son to Google the odds of getting FTD if a parent has a gene mutation (out of respect for our family please do not Google – you really do not need to know).  And so, out of the blue, I get a text from my son who is in his bedroom, and I’m in the kitchen.  He knows.  He knows the ugly truth.  Four days before his 16th birthday.  He knows that possibility of his life being cut short. He knows the possibility of turning into his father.  A father that he struggles to relate to.  A father that he no longer respects as the head of our household.  A father that has trouble shopping at the grocery store.  A father than cannot remember where the clean dishes need to go.

And I weep.  I weep like I never have before.  I crumble into a pile of pain.  How do I make this right?  How do I find the words to tell my husband how mad I am without killing him with my hurt?  How do I console my son?  How do I rebuild the trust because my boy now feels that I’ve kept a critical piece of information from him?

This is too much for any child to process.  Heck.  I can’t process it as an adult.  Why now?  Why 4 days before his birthday?  His 16th birthday will always be overshadowed by the fear that one day he, too, will have FTD.  We don’t know.  There is a test after he’s 18 that can be performed.  But, is it the best decision to do so?

And, so, the circle of life continues.  Today is the day my son came into this world with all my hopes and dreams of an amazing life.  It is still possible.  It is.  There is a lot of life to live.  But, I’d be a liar if I didn’t also admit that I’m ridiculously scared for my son.  Scared that he can’t handle the unknown but real possibility of having this disease.  Scared that he will stop living his life.  Scared that he might hurt himself to relieve the pain.  Completely scared.

All my son and I can do is talk. Talk more. Be honest.  Painfully honest.  And survive.


First Born’s Plight (his birth story):

Well, I was supposed to arrive on September 28th, but I decided that I wasn’t quite ready to leave the comfort of my 9 month home. My mommy was getting anxious. I know this because she all of sudden went on long walks and ate lots of spicy foods. Someone told her that this would help coax me out, but I wasn’t going to have any part of it. After almost a week of additional luxury in my comfy home, I heard that someone was going to force me out on Monday, October 7th. This did not sit well with me at all. How dare anyone tell me when to get moving?

On the evening of Saturday, Oct 5th, my mommy and daddy went out for Mexican food. Well, I had just about had enough of the Mexican fare. My mommy joked early on that I was going to come out smelling like a taco. She wasn’t too far off on that one. I just couldn’t stand another bite of salsa so thought I would make my move out to the world.

Around 10 pm Saturday night, things were put into motion for my arrival. Mommy started timing the contractions. Around 11 pm, they were coming every five minutes and she sensed that I was on my way. My mommy stayed up all night timing the contractions and contacted her midwife at 6 am to let her know what was happening. The midwife suggested staying home as long as possible. Mommy was discouraged but took the doctor’s orders. She went on a walk, took a long bath, and even played Yahtzee with daddy. She won by the way and it wasn’t because daddy let her!

Around 3 pm on Saturday, those darn contractions were just getting too strong to handle at home. Mommy contacted the midwife and headed off to the hospital with daddy. After checking in and working through lots of scary forms, mommy and daddy settled into the room and watched my heart beat and contractions on the fancy machines. The midwife said that mommy was 4 cm dilated! Wow… I was really on the way. A few minutes later my Mimi, Aunt Cherie, Aunt Rhonda and Aunt Ginger arrived at the hospital. Everyone was just so excited to meet me.

My mommy and daddy worked hard at handling all the contractions. Sometime around 7 pm mommy found out that she was 7 cm dilated. After some quick math, she calculated that she had been in labor for 20 hours. She continued to walk and work through the contractions. Around 9 pm, she decided to take the medicine to numb her tummy and legs.

Things seemingly moved quickly from there. She was checked again around 10 pm and was already at 9 cm. Oh how exciting, all the nurses started preparing the room for my arrival. Little did they know that I had my own tricks up my sleeve. I decided to hold on a little longer. After all, my mommy had said that it would be neat to have a baby on the Australian Labour Day especially since she and her twin sister were born on the US Labor Day.

Around midnight, the midwife checked mom again and nothing had changed. I know mommy was deflated. The midwife and nurses decided that it was time to “encourage” me to come out. The nurse gave mommy some of that medicine to make the contractions harder. I realized that there was no use to fight it any more, but I still took my sweet little time getting ready for mommy to get me out. Sometime close to 3:45 am I was in position and ready.

This is where mommy really had to work. Daddy thought he was going to watch from the sidelines, but the nurse and midwife put him to work by handing him my mommy’s leg and giving him specific instructions on what to do. Mommy started working on pushing me out. I fought like crazy to stay in, though. You see most babies’ heart beats decrease when their mommy’s start pushing on them. My heat beat increased. The nurse just couldn’t believe how hard I was fighting staying in my comfy home. Little does the nurse know my mommy and daddy. They are the most competitive folks I know – wasn’t it obvious from the Yahtzee game earlier. I guess I got that from them.

My mommy pushed and pushed and pushed. After nearly 2 hours, I finally gave in. I mean how many times can you hear your mommy say, “I will not be defeated.” At 5:37 am, I entered this world. I did bite the midwife and kick mommy on the way out, though. As I was being carried over to the special table for babies I heard my mommy say, “Oh my, that is a big baby.” You see the midwife already knew that I was going to be a big boy when it took nearly 5 hours for mommy to go from 9 cm to 10 cm.

The special NICU doctors made sure that I got all that yucky stuff out of my mouth and lungs. Everyone in the room was anxiously anticipating the trip to the scale. A nurse announced that I was 9 lbs and 1 oz. After all the cleaning, weighing, and checking over they finally put me in my mommy’s arms. She had the biggest smile on her face. Daddy looked pretty happy too!

Posted in Uncategorized | Leave a comment

Another Trip to Vandy

Yesterday was another trip to Vanderbilt Hospital in Nashville.  It’s a two hour drive on a good day.  It’s two hours to reflect on the limited conversational abilities of my husband.  It’s two hours listening to comments about the passing billboards and buildings that have no real relevance to our lives.  Yesterday, the trip was three hours due to traffic and rain.  We make this journey several times a year as it is our only real hope for physicians that understand my husband’s rare brain disease – FTD.  In our mid-sized town, the local neurologist has one other confirmed case of the disease.  He is a bright, capable professional but just has very little personal experience with the disease to draw upon.  Thus, Vandy is our best alternative.

The two neurologists at Vanderbilt that we’ve seen have FTD patients that number only in the single digits.  There are several variations of the disease.  So, the number of patients with the behavior variant (bvFTD) like my husband is even smaller.  Keep in mind this is a regional research hospital.  This disease is rare.  Our new neurologist, Dr. Darby,  is young and has a real interest in FTD.  He is trying to bring FTD clinical trials to Vanderbilt.  This is an encouraging development from even a year ago.

Every trip to Nashville is emotionally charged.  Yesterday was no different.  There is always the shred of hope that there might be a new drug or treatment that has just been discovered to help with the progression of the disease or eliminate the symptoms.  Nope.  In 18 months, it hasn’t happened.  But, the illogical hope remains.

Several weeks ago a research assistant called and asked if my husband and I would be willing to participate in a research study.  The study would occur on the same day as our already scheduled appointment.  It would involve an in-depth MRI (using a 3 Tesla machine versus a typical 1.5 Tesla one).  The images are much more detailed in this more powerful machine.  It would give us the opportunity to compare the MRI images from nearly two years ago to look for additional shrinkage in the frontal or temporal lobes.  The research study would also include some cognitive tests.  Sure.  No problem.  We’d love to participate.  From the beginning, my husband and I have wanted to help in any way to advance the research of this disease.

The MRI was completed in about an hour.  It was easy.  All the metal and magnetic objects were removed from my husband’s pockets.  He laid still in a special chamber for the duration of the test.  He participated in the cognitive tests as well.  These tests were similar to the ones previously given by a Neuropsychologist while trying to obtain a diagnosis.  Some went well.  Some did not.  Parts of his language faculties have been impacted by the disease.  His number and spatial abilities remain strong.

The unanticipated (because I neglected to read the details of the study) and perhaps troubling part of the research study involved me.  I was expecting to be interviewed about the disease, diagnosis, progression, etc.  I was not anticipating taking the same ethical exercises as my husband.  As explained by the research assistants, this study involved evaluating the compromised ethics (morals, judgement) of people afflicted with FTD.  It tends to happen later in the disease where patients have been known to get arrested for shoplifting, drunk driving, going in people’s houses without permission, exposing themselves in public, or many other frightening behaviors.  The research activities I was asked to participate in were hard for me.  Could you smother your own child to save thousands of other people?  Would you be willing to give someone else additional electric shocks to earn more money?  What about shocks to yourself? Would you be willing to punch a stranger in the face or drink a pint of warm cow’s blood for $10,000?  I struggled.  Every question made me consider my own morals, my value of money, my ability to hurt other people (or not in most cases).  I hated it and expressed my distaste for what I was being asked to consider and respond to.

My husband had about twice as many exercises to complete as me.  He finished within a minute of me.  How could that be?  Didn’t he struggle like me with every question and decision in these exercises?  For some background, my husband is considered to still be in the mild stages of the disease.  To my knowledge, he has not broken any laws.  He does do questionable things that he NEVER would have done before the disease.  He asks for free stuff every time he orders at a restaurant (or even in department stores).  He visits neighbors too often and without notice.

The research assistants could not share what they were evaluating in the exercises we participated in.  I was considered a control subject.  Initially, I felt they were looking to see the lack of judgement based on the response of the FTD patients.  For example, “Are you willing to punch a stranger in the face for money?”  The anticipated answer from a FTD patient would be Yes.  But, then, another thought took hold.  Patients with FTD have no real understanding of how the disease is impacting them.  For example, my husband sees nothing wrong with his behavior most of the time (occasionally there is some clarity).  Recently, he failed to understand that trying tickle his friend’s feet was not OK.  So, my husband still sees himself as a man of high character and good judgement even though his behaviors do not always align with those sentiments.  I asked my husband how he answered the questions about accepting $10,000 for various activities.  He said he answered them all (with a few obvious exceptions) that he would not take the $10,000.  Hmmm.  One of the questions was “Would you accept $10,000 for giving a friend a wedgie – with their permission?”  He said no.  What?  If asked, he would give a stranger a “Wet Willie” for no money at all.  I am certain of it. Just the day before he was purposely throwing cold water on the teenage lifeguards at the pool.  But, on this day he said he wouldn’t take $10,000 for a wedgie.  Strange.  On the question about smothering your own child to save thousands of people (and many other similar troubling questions), his answer was consistently “do nothing.”  What?  My husband gets excited if he overhears someone parenting their children.  He wants to jump in and do something to help even when it is socially inappropriate.  If he thinks someone is hurt on the soccer field, he is out of his seat yelling that there is someone hurt on the field and to stop the game.  Yet, his response to all the questions was “do nothing” in a crisis.  Odd.

Suddenly, the speed at which he completed all the tests made sense.  He didn’t struggle with every question.  So, perhaps the research assistants were actually evaluating the FTD patient’s lack of consideration and struggle with decisions.  Decisions in FTD patients are impulsive.  They do not have the capacity to weigh options and consequences.  Whereas, me the control subject, wanted a shot of vodka after the first test.  It completely stressed me out trying to decide what was the best decision with the least harmful outcome.

And then my thoughts moved to considering how dealing with this disease translates to our daily life.  It is me with all the worry and weighing of options.  It is me trying to keep my husband from crossing the ethical line.  He’s lost his judgement and will continue to do so.  He will never have it again.  Yet, he thinks he is fine, great actually.  And so, this simple agreement to participate in this research project has put me into a tailspin.  It’s kicked me in the gut.  It’s made me face what is to come despite my best efforts to pretend it won’t.

After concluding several hours of the research study, it was on to meet the new neurologist.  It suddenly felt once again like we were mice in a cage in the laboratory.  The new neurologist was compassionate and interested.  But, this disease makes my husband a scientific curiosity.  He asks, “What is happening in terms of the disease?”  We explain.  The doctor takes notes.  My husband always wants to paint a rosy picture of how much better he is doing.  He says how great things are going because he is eating blueberries and nuts.  Meanwhile, I slink in my seat.  When I try to interject with symptoms he is experiencing, my husband explains away everything I say.  I can see the hurt on his face when I mention how he doesn’t want to do chores any more or how he laughs at the kids when they are injured.  He so desperately wants to be OK.  He is so fearful that I will leave him because he feels he is no longer husband worthy.  He wants to convince me and the doctor that he is OK.  And, so, the dance continues for another Vandy visit.  Nothing changes.  Meds stay the same.  There is nothing they can do.  We leave, and I want to scream, “You did not get the full picture of our lives.”  Everything is not great.  We are struggling in every way.  Yes, my husband is better off than most of your FTD patients, but our life is not rosy.  It stinks.  Every day is hard.

That’s it.  Our time is up.  I want three or four more hours to talk.  I want to share our story.  I want to help more people understand this disease.  I want to pick the neurologist’s brain about his own theories about FTD.  I want strategies for negotiating the relationship between my husband and kids.  My God.  Please don’t dismiss us after 20 minutes and make us wait another six months for hope, no matter how illogical that hope may be.  We’re done.  Home in two hours.  Another Vandy visit in the books.  Another dashed hope for relief.

** Note: This is not a criticism of the fantastic Neurologist and research assistants at Vandy.  They were great.  It’s just the frustration over not being able to do anything to help my husband.  Our situation is complicated by having school aged kids in the home with a parent with FTD.  It’s one parent juggling so much for 3 kids and her spouse.  The Neurologist is working to help us get hooked into a support group and on to some more clinical trials.

 

Posted in Uncategorized | Tagged , , , | Leave a comment

5 Sec or 5 Min Answer?

I’m asked all the time about how my husband is doing.  He has a degenerative frontal lobe disease called FTD (Frontotemporal Dementia).  As suggested by someone on a FTD forum for spouses, my response will now be, “Would you like the 5 second or 5 minute answer?”  Either response is absolutely fine.  I have no issue talking about most things associated with this disease, or how our family is tackling the challenges.  Awareness and openness about this disease has absolutely saved our family.

The 5 second (or a bit longer) answer: 

My husband is still working and driving.  These are two huge milestones.  There is no timeline for how long he will be able to do either.  His company has been extremely gracious.  My husband’s memory, decision making, OCD behaviors, and tolerance for chaos all continue to deteriorate.  The kids are angry, sad, and embarrassed – daily.  We adjust to a new normal on a weekly basis.

The 5 minute (or a bit longer) answer:

Examples seem to be the best way to describe the disease in my husband in its current state.  He looks normal.  He is not.

Our family recently took a week long cruise.  Overall, we had a fantastic time.  But, being out of routine, made the symptoms in my husband so much more pronounced.  The kids and I kept reminding each other that we will never see these people again.  It’s what got us through the week.  By the end of the cruise, I could not go anywhere with my husband without someone saying, “There’s Bill.”  One guy even remarked that he couldn’t believe my husband was married, because he was all over the boat being the life of the party.  (Note: this was not my husband even 2 years ago).  He sang karaoke several nights – his favorite song “Sweet Home Alabama.” He even entered a singing contest.  The magician told him to pipe down after he heckled him several times from the audience.

More than that, he spent much of the time confused about basic things like where to go for the evening shows even though he had been to the theater multiple nights already.  He struggled to use the Southwest kiosk to check-in for our flights.  The questions were challenging for him.  I worried that he might make a bomb joke to the TSA security people, because his judgement is so impaired he no longer understands the consequences of doing so.  He constantly disappeared on the boat going off to do his own thing even when asked to stay put.  He could not keep watch of our six year old.  His attention span is entirely too short now. (Note: my husband was always amazing at watching the kids and making sure they were cared for and safe). One commonality with this disease is selfishness.  It was irrelevant to him what temperature anyone else may want the cabin, how hungry anyone may be, or if someone wanted to nap.  His primary focus was on himself.

During one lunch, he took a festive hat off one of the crew members and was running around the dinning room with it on.  He wanted pictures with all the dress up characters on the boat – sometimes he would circle back for more pictures with the same character.  Most days he wore his Army Ranger baseball hat. He is quite proud now of his military time and wanted to talk to anyone about his five years in the service. It was always the same stories.  The same information told the same way.  He did not wait to hear what anyone else wanted to add to the conversation.  He was only interested in telling his information.

Understanding the meaning of words and his struggle to interpret what words were being said became more obvious on the trip.  He would repeat back what he thought you said like “squirrel” even though you said “supper.”  He does not have a hearing issue.  His speech was garbled at times as well.  This was a troubling new symptom. Eventually, based on what we know about the disease, he will not be able to speak at all.  He needed to be watched carefully for choking.  The esophagus is impacted and choking is now an ongoing concern.

image1 (4)The ship activities included ice skating, rock climbing, and riding a bogey board on a manufactured wave machine.  At one time, my husband would have enjoyed all three activities. He did not attempt any of them.  It may have been due to his weight.  This disease causes overeating especially of sweets and carbs.  He has gained 30 pounds in the last 18 months.  Or, his lack of interest may have been due to his muscular changes.  He has lost flexibility and balance.  A third possibility may be apathy.  He has already lost interest (or ability) to perform many of the household chores he used to do such as loading the dishwasher or sorting / folding the laundry.

Not noticed as much on the trip but certainly at home are my husband’s OCD behaviors.  He turns off the light if I leave the room even if I am planning on returning.  He checks and locks the doors constantly.  Most annoying to the kids is moving their stuff.  He no longer knows what belongs to whom, but he moves items to new locations.  We all ask him to please not touch our stuff.  But, it continues.

The kids ask me all the time, “Please make dad stop <fill in the blank>.”  I can’t.  I am a fixer. Yet, there is not a darn thing I can do to fix this disease in my husband – the OCD behaviors, the silliness, the clinginess.  The symptoms are escalating.  The worry is too.  We can only take one day at a time and put one foot in front of the other.

That’s the five minute answer to where we are today with this insidious disease, and as a nod to my six year old’s obsession with the Titanic, it’s really only the tip of the iceberg in terms of the complexity of the symptoms and progression of my husband’s FTD.

Posted in Uncategorized | Tagged , | Leave a comment

AFTD Conference – The Gift of Connections

Standing on the wooden platform of the Chicago “L,” I wondered if I were strong enoughimage1 to face the AFTD Annual Conference. AFTD is the non-profit for Frontal Temporal Degenerative diseases. Interestingly, flying by myself and navigating the public transportation system did not concern me at all. Attending the conference did. A friend had forwarded me information about the conference and a way to apply for a grant to attend. It seemed like an opportunity that I needed to make happen despite my misgivings about leaving the three kids with their dad (bvFTD diagnosed 16 months prior) and my personal anxiety about meeting others much further along in their FTD diagnosis.

A GPS misunderstanding (proving once again that GPS’s make you stupider) sent me to the O’Hare airport to ride the free shuttle to the hotel rather than hiking across the parking lot from the Cumberland station. Things really do happen for a reason. It placed me next to my first conference attendee. It set the precedent for what was to come in terms of meeting some of the most amazing individuals. The conference was truly about making connections with those in the trenches.

image1 (2)Over 350 people from 32 states and multiple countries were in attendance at the conference.  One thread connected us all – FTD.  There are various forms of the disease but it was shared that bvFTD (the behavior variant – my husband’s diagnosis) is the most challenging from a caretaker’s perspective.  Deep breaths.  Information presented about the disease and the progress in terms of research was bleak. Donate the brains. Participate in clinical trials. Try these few drugs and see if any help with the symptoms. Take care of yourself. That was it. Truly. There is one outcome to this disease right now. One. And it’s cruel and unforgiving.

My husband texted me multiple times from Alabama asking for updates.  What he really wanted was word that I had learned of the magic pill to cure him.  It was another heartbreaking phone call to him at the end of the conference explaining that, no, there was nothing new in terms of a cure or way to slow down the disease.

There were several beautiful speakers afflicted with the PPA (language variant) version of the disease and a vignette showing the love between spouses as they battle this disease together.  Honestly, this is not our reality.  It is something I am still struggling to reconcile.  There is love without a doubt.  But, it is challenged by hurt, fear, frustration, worry, anger, and loneliness.  Adding to that is the care of three children.  It is overwhelming on a good day.

So, it’s the individuals I met and the gifts they gave me who have my focus – not this insidious disease.  All were truly remarkable people who are now part of my FTD journey.

Linda, the nervous wife from the Midwest: She had not traveled alone in forever and asked 4 times if she had the right transportation to the hotel.  After giving her reassurances, she and I bonded over educating a shuttle full of college students on FTD. We both needed one connection to feel good about attending the conference – to know it would be ok. We gave each other that gift. Thank you Linda – we did it friend.

The social worker from New York, Marisa, who invited me to dinner after the first meet and greet: We had a lovely dinner discussing our lives and what got us to this conference. It was Marisa who inspired me to request a social worker to be part of our care team.  She and I ran into my first bvFTD inflicted individual other than my husband.  It floored me. No one acts like my husband – until now. Her gift was companionship when I needed it. Thank you Marisa.

Mary and Phil, the couple from Kentucky that received a recent diagnosis in Phil: Both  had this infectious energy and hope that I couldn’t help but gravitate towards. Mary and I connected over being warriors in this battle. Neither giving up to find answers. Neither giving up on our spouses. Phil gave the most heartfelt hug while saying goodbye. Despite having this disease, he showed compassion for me. That touched me deeply.  Keep fighting Phil and keep giving your compassionate gifts to others.  Thank you Mary and Phil.

The sister and daughter from DC and NJ who were at the conference for their loved ones:  These women both seemed so young yet so mature to take on the challenge of care taking for this disease. Their resilience and eagerness to learn warmed my heart and gave me the gift of hope for our young people. Thank you ladies.

The regional volunteer coordinators, Michelle and Katie, who advised and guided me through the conference: Katie has been fighting for her father with this disease but seemed entirely too young to be so wise. She left me with small nuggets to ponder like grieving and saying goodbye to my old husband and building a new relationship with my new husband. He is the same man, but the old and new personalities are not the same. She did it with her father. It can be done. Love is that strong. Katie also kicked me in the pants telling me that my well being needed to be a priority, too. Her gift was believing in me.  She’s got my back. Thank you Katie.

My special Canadian friend who sought me out after the spouses’ breakout session to talk about having kids and dealing with this disease: She somehow knew we had a deeper connection. We discovered that both our husbands have the same extremely rare gene mutation. We cried over our grief and worry for our children getting FTD.  It keeps us up at night. Her husband passed a year prior, but she was at the conference still learning and fighting for her kids. Her gift was reminding me that I’m not alone in my grief that goes beyond our spouses. Thank you my Canadian friend.

The man with bvFTD that told me a corny coffee joke and made me belly laugh: He gave me the gift of realizing I have more grace for others than for my husband with the same disease. I can do better. I will do better. Thank you corny joke man.

The man sitting next to me in the spouses forum that turned to me after I stood shaking and voice quivering telling the other spouses that writing was my therapy for surviving this disease as a caretaker:  He said he had written every night on his journey across the country in his camper to attend the conference. He didn’t know what had compelled him to write. He now had his answer. His gift was showing me that I could provide someone clarity in this bubble of confusion. Thank you fellow writer.

The mom from CA who was also in the spouses forum that sought me out at the very end of the conference: She wanted my blog.  She sensed our paths were similar. Our brief conversation and shared tearful eyes confirmed her intuition. She gave me hope that my voice might be important and help others. Thank you my California friend.

There were others. I may even have some of the names wrong. It doesn’t diminish the impact of the few minutes we spent together at this conference and the importance of the connection. I have renewed strength. I have new perspectives. I have fresh priorities. I have sadness wrapped with hope. I just pray that I left a little something with you, too. Thank you friends. You’ll be in my heart as our journeys continue.

Posted in Uncategorized | Tagged , , | Leave a comment

Beach Trip – Got Your Back Kid

After three days in Delray Beach at my father’s house for spring break, our family finally made our way to the local public beach. It was a sunny but very windy day. My middle son, Matthew, noted the wooden sign with the lifeguard flag colors as we strolled down the boardwalk towards the sand. Red meant strong currents and waves. Caution needed to be taken.

I hadn’t intended on inviting my father along for the trip to the beach. We were clearly on the brink of wearing out our welcome and know his desires for alone time after chaotic days (same as me). My husband, afflicted with a terminal brain disease that robs him of his judgment, invited my father to go with us. To my surprise, he graciously accepted. For three days, my husband had latched on to my dad in a way that he never had before. They played a word game on my husband’s cell phone, prepped the boat for an afternoon ride, shared stories, and laughed at each others jokes. My husband loved the attention and acceptance as his disease often causes others reject his quirkiness.

On arrival to the beach, we spread our frayed quilt on the sand and surveyed the waves. The red flag was visible at the lifeguard stand. A slew of kite surfers were down the beach tearing up the waves generated by the high winds. Only a handful of swimmers were in the water no deeper than knee deep. I began to explain to my husband who was obviously eager to get into the water that he needed to watch out for the undertow. He gave me a confused look. My father joked that he could end up in Miami if he wasn’t careful. That still did not register with my husband so I worked harder to tell him how the ocean could pull him unexpectedly hard down the beach. If he felt the undertow, to please get out of the water. He turned and looked at the waves and nodded unconvincingly that he understood.

My husband grabbed a boogie board and headed down to ride the waves. My 14  and 6 yr old sons stripped down to their suits and headed to the water as well with the other boogie board.

Years ago, my husband was the parent concerned with our children’s safety at all times. It was his parental role. Surely, my husband would note the danger in the water today after our discussion of the undertow and assist the six year old with the boogie board making sure he stayed close. Nope. My husband began trying to ride his own boogie board – laughing, making sure I was watching him and enjoying his antics. I split my attention between the six year old struggling with his board and my husband. My quiet beach trip came to an abrupt end. I sprinted to the wave breaks trying to manage both my husband and six year old. It was clear my husband would not be watching the younger one and did not understand the dangers for himself in the water. My eyes paced between the two wondering what to do. I couldn’t save my physically much larger husband if something went wrong. I couldn’t take my eyes off the six year old long, either. I ran back to our quilt and unloaded my cell phone and keys commenting that I was preparing to go in when needed.

My dad sensed my panic and anxiety over my family being in the water and me not being able to manage them all. The six year old kept floating further south, and I had to redirect him back up the beach. My husband was falling in the water unable to get back up for multiple wave strikes. His balance was completely off that day. I must have asked him 10 times, “Are you ok?” He smiled like nothing was amiss at all. My dad made his way to the water’s edge. He kept his focus on my husband. I continued to manage the six year old. My son eventually grew tired of the water and headed back up to the beach to play in the sand. I followed him.

Knowing my baby was safe, my breathing finally resumed. I sat down on the quilt and looked back at the ocean. My 6’4” gray haired 73 yr old dad stood vigilant at the shore keeping an eye on my husband. He never said he was there to help. He never made my husband aware of this purpose. He just stood and made sure nothing happened to him. I knew his intent. I knew he had my back. I knew in that moment that he understood my struggle to be everything I needed to be to my kids and my husband – to keep them safe and happy. The strength of his frame against the ocean and its tumbling waves is one I will not easily forget.

My husband eventually left the water and stood on the sand. I carefully laid back and closed my eyes. My middle son laid on top of me to absorb my warmth. My father quietly sat then laid back next to me. We weren’t touching, but I could feel his presence. All I said was, “I can finally relax.” He replied with, “It took you three days to relax?” And I said, “Yes. It took three days.”

No other words were needed. He knew he gave me a gift for three days – a break that I desperately needed. He showed me the love of a parent even to an adult child. He understood my complicated life. His actions were quiet but not unnoticed. Thank you dad. Thank you.

Posted in Uncategorized | Leave a comment

FTD Genetic Link – Live Your Life Every Day

A friend asked me recently, “What is your greatest fear in life?” Without hesitation, I choked out, “That my children will get this crappy disease.” My body curled into a fetal position, and I cried.

My husband has a rare, terminal brain disease called Frontotemporal Dementia (FTD). It can occur spontaneously or in 40% of the documented cases passed genetically.

My husband and I met with a genetic counselor a few weeks ago to discuss the genetic link in this disease. I started with saying that I was 99% sure my husband’s father had this disease (based on 168 pages of medical records we miraculously were able to retrieve from the VA hospital). The counselor replied she was 99.9% sure his dad had the disease. This was crushing, but at the same time affirming, as there was still the thinnest thread of doubt spun by those closest that his father was actually afflicted with diabetes, schizophrenia, too much drinking, early onset Alzheimer’s or any number of other explanations that never seemed to fit.  My husband has the only documented case in the US of this particular gene mutation code on the MAPT gene.  It is absolutely mind boggling.

The counseling appointment was one I had waited and pushed to get for eight months. Our local neurologist had ordered a very sophisticated genetic test for my husband. Finding a gene mutation would confirm his disease and pave the way for future disability claims.  The implications were much bigger than that, though.  This disease can be genetically passed to our three sons. We learned this devastating news without any genetic counseling. At the risk of digressing too far here, this test never should have been ordered and the results shared with us without that counseling. There was already plenty of supporting evidence that my husband had the disease, and it had been passed from his father before ordering the test.

The genetic implications of this disease is grief that I have compartmentalized. There is no way I am ready to process FTD having been passed to my children. Yet, the most pressing question from my children on a near weekly basis is, “Will I get this disease?” It’s a question that has to be answered, carefully. The answer has the potential to chart the rest of their lives.

“Will you test the kids?” and “What are the chances your kids have this disease?” are the questions most commonly asked from friends when talking about the disease and the topic of genetics is raised (which is often). Stop asking these questions, please. But, more importantly, stop telling my kids to get tested. Legally, they cannot be tested until they are 18 years old.  This is not like testing to see if you have a higher percent chance of developing breast cancer. If you have the FTD gene mutation, there is a 100% chance you will develop the disease. 100%. Your fate is doomed. There is no treatment or cure.  And, this disease is ugly – one of the ugliest. My kids live with it every day. They do not want any part of it. The odds of having the gene mutation are higher than any parent can tolerate. Heck a 1% chance would be tough for a parent.

So, what do I tell my kids when they ask if they will get this disease?

I say you have a higher chance of getting the disease than the general public.

I say you could walk out the door and get hit by a bus today. No one knows how long they will be on this earth.

I say live your life every day. Do not pass up any opportunity that comes your way to do something fun or adventuresome.

I say have kids. Be a dad. There is a lot of life to live and being a parent is a tremendous joy.

I say pick your wife well. You will need someone that is willing to walk to the ends of the earth for you. Pick a woman that won’t leave you when the times get tough – if they do.

I say be kind. Other kids are struggling, too. Other kids worry about what they may get from their parents. You are not alone.

In the future, when the time is right, what will I tell my kids?

I will say it is your choice and yours alone to be tested. I will say that a lot of thought and counseling needs to occur before you choose to do so. This information is a huge burden to carry forward.

I will say that there is testing that you can do to prevent passing this on to your children. Investigate your options.

I will say that I have your back on any decision you choose to make in terms of fertility donations, adoption, or embryo / fetal testing.

I will say that I am sorry. I didn’t know. We didn’t know. And despite my best efforts to protect you, in this instance, I could not.

dna

Posted in Uncategorized | Tagged , | Leave a comment