I am so saddened to tell everyone that the world lost a great man, my husband, Richard Bay, on January 8, 2016. His horrendous battle with Behavioral Variant Frontotemporal Degeneration (bvFTD) is finally over. He is out of pain and for that we are all grateful. Rich battled this beast for eight years and continually amazed me with his courage and bravery. I do not miss FTD. It was exhausting and robbed us of the years we had hoped to enjoy. He was an incredible husband, father and papa. I miss him so much that it hurts to breathe. Click here to read his obituary and sign the online guest book.
Rich wrote this a couple of days ago. He rides an emotional roller coaster all day long. It is often tortuous for him. It is really hard to watch and I often feel helpless to stop his pain. As I have said before, “FTD (Frontotemporal Degeneration) is NOT a floral delivery.” This is what Rich wrote:
I HAVE BEEN ASKED HOW I KEEP GOING AND HOLDING MY HEAD UP SO HIGH AFTER ALL I’VE BEEN THROUGH. ONLY THOSE CLOSEST TO ME KNOW WHAT I GO THROUGH EVERY DAY. THE OTHERS, THEY CANNOT BEGIN TO COMPREHEND THE TORMENT, PAIN AND LONELINESS. YET, THE QUESTION IS STILL ASKED.
I KEEP FIGHTING AND HOLDING MY HEAD UP HIGH BECAUSE I AM NOT A VICTIM.
THE SCARS I WEAR, AS A RESULT OF THE DAILY FIGHTS FOR MY EMOTIONAL HEALTH, GIVE ME THE KNOWLEDGE, STRENGTH AND WISDOM THAT I WILL LIVE TO FIGHT ANOTHER DAY.
I AM STILL HERE AND FIGHTING.
I AM LIVING PROOF THAT I HAVE A HISTORY OF VICTORY.
NO MATTER WHAT, I AM A WARRIOR, NOT A VICTIM!
I AM A WARRIOR.
THIS IS WAR.
I CONTINUE TO FIGHT EACH BATTLE.
I AM A WARRIOR!
Rich and bv FTD (Behavioral Variant Frontotemporal Degeneration)
I know I have needed to do some more posts in my blog. I’m sorry, but FTD has become a huge issue of time, exhaustion and uncertainty. I made this video because something really cool happened:
I got into my car and my iPhone switched over to my bluetooth receiver. Sometimes it starts playing the audible book I’m listening to at the moment. This time it started playing a song. I thought, “That’s weird. I haven’t listened to my music on my phone is ages. Why would music come on?” The song that started play, from the beginning, was “Am I Crazy” by Rebecca Lavelle. I sat there and listened to it and sobbed. It felt as though my father, who died in 2009 from complications of Alzheimer’s disease, my grandmother and grandfather and other loved ones who had died, were surrounding me and “giving” me this song. I felt as though I was being told, “We see you. We get it that this is difficult and we are holding you.” It was as though I was being embraced in profound love and support. After I cried for quite awhile, I drove home. I immediately started working on the video attached to this blog post. I wanted to honor Rich and all he means to me… to our family… as well as get some information out there about Frontotemporal Degeneration. The second song on the video is also by Rebecca Lavelle and it is called “Never Enough.”
Reading has become difficult for Rich due to short-term memory issues related to his FTD.
Rich shares a common diagnosis with the man in the linked article below, Howard Glick. They have become friends. Howard’s attitude and resilience have already begun to help Rich take a new look at his own disease, Frontotemporal Degeneration.
It is difficult for patients with FTD, and their caretakers, family and friends, to adjust to “the new normal” of life with this disease. The roller coaster of emotions is absolutely mind-boggling. When people ask me how Rich is doing, I usually say that it could be different from how he was doing five minutes ago.
Personally, I think my husband is “a stud” for simply living the moment-to-moment battle of FTD. It is so amazingly bizarre, unpredictable, catastrophic, tortuous and the most beautiful tribute to internal strength that I have ever witnessed… or experienced.
Forbes article regarding Howard Glick and his journey with living with FTD.
Howard Glick’s blog regarding FTD
Last night Rich played music with some friends. Bob and John have been asking him to come over for their jam sessions for the past year or so. Rich is a drummer and sometimes the rhythms speak to his brain and calm him. Sometimes he feels a massive sense of sensory overload and cannot drum. Often he wants to go and participate, but a severe mood swing will happen at the last minute and he will refuse to leave the house. That happened last night, but he went. I think it helped that Dave came here to get him, which kept Rich in “go mode” and “not give up mode.” When we arrived at our friend’s house there was a person Rich had never met before. Historically that puts a ton of pressure on him to try to maintain some semblance of normalcy even if he’s crawling out of his skin. Last night, he simply stepped into “this is me… this is my funky brain” and had fun. All the guys, Bob, John, Dave, Rick and Dom (the new guy) were all very supportive and said, “do what you need to do. You need to go lay down or leave the room… just do it.” It was perfect for Rich and gave him a possible fun escape for the future jam sessions, too.
Of note, I also watched my reaction to meeting Dom, the new guy. I felt an instant need to protect Rich from misunderstanding and judgment. Like Rich, I stepped into “this is my husband’s brain mode” and let it go. It simply is what it is and letting his brain just do its thing is so much easier than trying to cover any possible outcomes.
What also worked was that while the guys were playing music, I went to dinner with two of my very best girlfriends, Brenda and Sam. I can be myself with them. There is no need to put on that fake smile and say all the spiritually correct things about the life Rich and I are experiencing. It was… well… fun. Maybe I can make that the new “F” word. Smiling…
Many people have been asking me why I haven’t posted anything on the blog in awhile. I’ve been giving that some thought and decided it is because I am working hard at accepting the “new normal.”
The irony of the “new normal” is that it is way beyond the stresses of the average family. When a friend or colleague asks, “how are things going with Rich?” I usually answer, “we are hangin’ in there… adjusting to the ‘new normal.'” (In my head I sometimes think, “my life would kill the average bear.” … insert a weak laugh here.)
I have already written about what this new normal looks like, so I don’t need to go into it again. Just know that this is a tribute to the human spirit that we can learn to withstand that which does not kill us. Prisoners of War have given testimony to this, as have people with horrendous chronic pain. Or like Rich, people trapped within their own brain disease. It does not mean it is easy or fun. It just means we have no other choice but to adapt… to the “new normal.”
We Can’t Do This Forever
(Click on the above song title to take you to Amazon to purchase the song.)
Our daughter Tara, has produced her original song, “We Can’t Do This Forever.” My husband, Tara’s dad, is the drummer for the production and that means so much to all of us. The song is amazing and we are so excited for her.
I thought if all I can offer right now is a perspective to help my friends and family know how good their life is, maybe that will help someone let go of some of the little things. Families dealing with brain diseases, and any chronic illness, still have to deal with the “normal bad things”… whatever those are.
Just a list of yesterday:
1. Took the trailer to the mechanic to have something repaired.
2. Check engine light on the truck kept staying on. Called a diesel mechanic and made an appointment to take it in to be looked at.
3. About a mile from my office, a friend found my office mail in a pile. Ripped open and insurance checks stolen. She brought the ripped up pile to me. I called my credit card company and cancelled the cards(awaiting new cards now) as the bill was in the pile and the full account number was seen by the thief. Called the one insurance company I could figure out and cancelled that check and was told they will reissue it in 21 days. Worried about what checks the thief stole that I don’t know about. Called the post office to request the mail carrier put the mail THROUGH the front door and not leave it outside. Note to self: make a sign for the mailbox to remind the carrier.
4. During all this, Rich was having a really bad day.
5. Juggle things around to get to an appointment to try to ease the extreme sciatic pain my hip is in. The therapist messed up the appointment and asked if I could come back in two hours. Okay… not easy to do, but I have to. (I can hear all my friends saying, “Patty you have to take care of you.” Seriously…)
6. Getting ready to go back to deal with the sciatic pain when I get a call that my 85-year-old mother has fallen on the stairs at her retirement residence. Race over there and tell her “YES WE ARE CALLING AN AMBULANCE”… she hates to go to the hospital. She was lying in a pile on the stair landing and we can’t even get her up because she starts screaming as we try to move her.
7. Spend 7-1/2 hours in the ER with mom. X-rays and CT scan show no damage to her artificial knee, hip and both shoulders. Falling on implants can break surrounding bones. She hit her head, but no brain bleed. Tara, my eldest daughter, comes to the hospital at 10:00 pm bringing dry clothes as the nurse accidentally spilled a bedpan of urine on my mom soaking her clothes.
8. Tara and I take her home, get her cleaned up and in bed (she refused to come back to my house and since she only lives a couple of miles away and proved she can get in an out of bed, I acquiesced and let her go home.) She listened to me talking to Rich on the phone while I was there in the ER with her. Mom knew he was not doing well and didn’t want to add to the chaos by coming here. I can understand that, but it makes me sad.
9. Get home and Rich is crawling out of his skin with anxiety. Give him more meds to try to calm him down. Nothing touches his funky brain. Finally get him to sleep. I fall into bed exhausted and my hip screaming with sciatic pain.
10. Rich wakes up about 1:30 am and is sobbing, rocking, and crawling out of his skin with anxiety and depression. He is hot all over and cannot lay down. I considered taking him to the ER to see if they would knock him out with something, but I have a feeling it would not be that easy and I’d be there for another 7 hours without them being able to help. I get him back to sleep after a couple of hours.
11. Wake up early to try to arrange coverage for Rich today as he’s not doing well right now. Tara and I coordinate between me, her, our youngest daughter, Ashley, and friend, Brenda for all of us to juggle work and taking care of Rich. Also, the school does not have daycare the week before school starts so six-year-old Ally needs coverage as well. Thank GOD we are all working together to keep this household afloat. Maybe I’ll find time to put yesterday’s groceries away off the kitchen counter and do the dishes… they are still there waiting.
In the mean time, I find my own perspective as I contemplate the horrendous pain that friends are going through this week in losing their 2-year-old granddaughter from a head injury. They find whatever solitude is possible from her organs going to save many other children and adults. My heart goes out to them in their loss, grief and horrible pain. I hold Ally’s thought in my heart. She said, “Scarlet will have to grow up in heaven now.” To grieving parents and grandparents, any words of comfort are as effective as a squirt gun on a raging forest fire.
May God let us all bear the burdens we are given with grace. In the words of my favorite little blue fish, “JUST KEEP SWIMMING… JUST KEEP SWIMMING…”