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.

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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.

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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.

For a year, 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

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Sucker Punched – Getting Our Wills

Woke up in a great mood.  Easter was over, and it had been a relaxing day.  My three sons were returning to school from spring break.

After some procrastination (mainly to ensure our huge house transactions were complete), I scheduled a followup appointment with our elder care attorney to finalize our wills and my Power of Attorney document.  The appointment was today.  We started this process a year ago.  It finally percolated to the top of the priority list, again.

We were sent some basic questions to think about before the appointment mainly involving when our kids might receive money should something happen to both my husband and me.  No problem easy decision – 25 and 30 yrs old.  The decisions regarding my husband’s finances also seemed fairly simple.  Sadly, we have known for almost 18 months that my husband has a terminal disease.  His assets will roll to me to take care of the kids.

It hasn’t happened in a while but there have been many over the course of our journey with my husband’s disease – a sucker punch.  It came out of nowhere, today.  Right in the gut.  Sucked the air out of my lungs.

What happens if I die?  Wait.  That is not part of this.  It can’t be.  My kids are already losing their father.  Nothing can happen to me.  That hasn’t even been a fleeting thought of mine.  Yet, here the attorney is asking me – what will happen with your assets if something happens to you?  What about your kids?  I couldn’t even focus.  I certainly couldn’t look at my husband.  The words came choking out, “My husband can’t manage our money or our kids.  He can’t even drive our kids anymore.  Oh, right.  They will have to go somewhere else if something happens to me. My sister will take them.”

Next question:  Who will take care of your husband?  Wait.  That’s me.  It’s always been me.  Again, my response came whispering out, “I guess that would have to be his brother or mother.”

Why I had not considered any of these possibilities was beyond me.  For the last 5 years, I’ve been hyper-focused on making sure my husband was ok, his care was managed, and our family had the resources we needed to carry on.  Never did I think about my own mortality and the complications that would create.

Oh man.  Just when I think I have a bit of a grip on things,  I realize I don’t.  So many things are just out of my control.  But, sucker punch – back at you.  I started making phone calls, sending emails, and getting commitments from those close to us so that my kids and husband will be taken care of in the unfortunate event something does happen to me.  God.  Please.  No.  Not any time soon.  My kids need me.  They are losing enough.  But, I can now sleep knowing that there is a plan in place.

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Let Me Feel

Let me feel.  You must.  Please do not temper my need to feel.  Sometimes it requires tears.  Many times it requires venting.  When it hurts the most, it requires writing.  It’s a way to process, express, release.

Feeling is not just grief.   It’s guilt.  It’s the guilt of being able to thrive in the midst of a tragedy.  It’s the guilt of not treating your loved ones the way you know you are capable of treating them.  It’s the guilt of being selfish (because you just have to be a little bit to survive).

So, if you see me and I’m having a down day, let me.  I’m ok.  It’s my way.  I’ve learned that tomorrow is a new day and a new chance to feel again.

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Warrior

Warrior.  Several friends (completely independently of each other) following our story have referred to me as a warrior.  This is not how I view myself.  I’m just a wife, mom, and friend doing what is necessary to help and protect my husband and family.  Yet, after careful consideration, there may be some truth to his warrior moniker.

It has been a battle.  But, why should it be so difficult to do the right, necessary things?  The safeguards established legally and medically become huge stumbling blocks for a simple woman trying to navigate her way through a rare, terminal illness in her spouse.  There is no road map that anyone provides.  Three doctors advised (their only advice) to “get our affairs in order” when my husband was diagnosed with FTD (brain disease).

Here are just a few of the battles already fought.  Yet, it feels like I am only on mile two of a twenty-six-mile marathon.  I provide this list as encouragement and possible road map to others.

  • Pushed for five years to convince a general practitioner, two neurologists, and a neuropsychologist in the medical community that there was something not right with my husband.
  • Established a family history when there was none by obtaining critical medical records belonging to my husband’s father and talking for hours with the only living relative willing to share information.
  • Insisted on specific testing when the doctors refused to believe the troubling symptoms in a 45 yr old man.
  • Worked tirelessly to convince my husband’s family that he is not well and will continue to decline. There is only one outcome to this disease, and it will not be easy or pleasant.  Even a proven gene mutation has not been enough to make them believe.  Yet, I do not give up.
  • Confronted a neurologist’s office about a HIPAA violation. Had to establish who was the decision maker and the one in charge of my husband’s care.  It did not matter the profession of other family members or their relationship with the neurologist.  I am the one with the most comprehensive knowledge of my husband’s symptoms and will continue to advocate for his care and rights.
  • Protected my husband’s job and benefits by seeking advice from an employment attorney.  Carefully got him under the FMLA umbrella and navigated a new relationship with the owner of his company before he could be fired. He isIMG_6296 still working long after most with this disease.
  • Met with an elder care attorney to establish financial safeguards and seek advice on making the tough decision to sell our house of 14 years. Based on the attorney’s advice, I updated beneficiaries, account titles, deeds, power of attorney’s and wills.
  • Found, bought, and closed on a new house. Downsized our existing house by half resulting in letting go of many personal and sentimental items.  This decision was driven to become mortgage free and create a less stressful living situation (smaller house and less “stuff” to organize and manage).  It was also another important step to protect our finances.
  • Prepared our vacated house for sale which involved cleaning, painting, hiring contractors, and significant yard work – plus emptying it of too many belongings (lots of real estate agent help and friends to accomplish this one).
  • Resigned from every volunteer activity I participated in, in an effort to save my time and strength for my family.  Gave up my personal career ambitions to keep my focus where it should be.
  • Visited our local Veteran’s Affairs office to determine the benefits afforded my husband. Obtained paperwork and spoke with the veteran’s nursing home to pave the way for future care.
  • Met with school counselors to establish a “village” approach to supporting my three children’s emotional needs.
  • Informed coaches, youth group leaders, swim team families, and friends of our plight when my husband really did not want the diagnosis shared.  It was to build our absolutely necessary support network and allow some grace for my husband’s troubling behaviors.
  • Struggled with but ultimately decided to go public with our family story in the hopes that our safety nets would grow and others could step up and be male mentors to our boys.
  • Asked for and have scheduled several key appointments for a driving assessment, genetic counseling, and occupational therapy.
  • Applied for and received a grant to attend a national FTD conference to connect with the leaders in the fight against this disease and other caretakers in the trenches.
  • Planned several big vacations to enjoy the remaining good times with my husband. Hopefully, they will also create special memories the kids can carry forward of their father.

As I review this list, I am awe of myself.  Never, did I think I would have the strength to accomplish one or two of these items in the midst of paralyzing grief.  Somewhere deep down, I’ve drawn on the various training and experiences of the past 47 years plus the support of some of the most amazing friends (siblings and mom) anyone would want in her life to handle each of these challenges.

Additionally, every morning I tell myself it’s time to get on my metaphorical “big girl panties.”  Some days I purposely wear boots, because I know it needs to be a “kick butt” kind of day.  There are certain jewelry pieces that I rub while silently thinking, “You can do this, Kat.”  These may seem silly,  but I keep telling myself – whatever it takes.  My husband and kids are too damn important to let them down.  So, warrior?  Maybe.  I’m humbled beyond belief that anyone would see me that way.  I’m truly just a simple woman, mom, wife, and friend – with a kick ass attitude, when needed.

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Sixth Birthday

Today is our youngest son, Jackson’s, sixth birthday.  For years, I’ve considered my adult life to be “before Jackson” and “after Jackson.”  His birth was a considerable landmark in my life and literally rocked my world.   I became unexpectedly pregnant at 40.  My husband and I had two sons (10 and 9) already that seemed to max our parenting abilities.  Adding a 3rd child seemed overwhelming.  But, we embraced this little blessing and limped through the pregnancy.  Luckily, I’ve always enjoyed being pregnant which made it a bit easier.  There were two scares early on and extreme tiredness but overall a beautiful time.

The day before induction, my mother had what we think was a minor heart attack.  I spent the day at the hospital making sure she was ok and getting the medical tests necessary to ensure her continued good health and well being.  Selfishly, I knew I needed her to stick around for a while, too.  This medical crisis brought my twin sister from Georgia to care for my mom.  Attending Jackson’s birth, was a welcomed consequence of my mom’s situation.

During the induction, my sister came into my hospital room.  There was tremendous fear that I was not going to make it through child birth.  At 41 (or any age), the risk factors are extremely high.  My sister had married recently and did not, yet, have children of her own.  I told her, “Cherie, if I do not make it, Jackson is yours.  Please take him.”

I knew.  I knew my husband would not be able to raise him.  Deep down. I just knew.  It was the first admission to myself that something was irreversibly wrong with my husband.

And so, today, I will choose to live through the eyes of my 6 year old.  His innocence.  His amazing gift opening abilities to make all feel special about what they selected for him.  His joy over the ice cream cake that he picked out for himself.  His sweet early morning snuggles and upside down birthday hug before school.

Because, any other alternative is just too darn hard.

 

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