• Deborah

My Husband's Devastating Diagnosis: The Inspiration Behind My Original Artwork ---- In Supplication.

Updated: Apr 18, 2020

When I was feeling particularly low, God gave me a special vision.

"In Supplication." 24 x 36 Mixed-Media (Acrylic and Ink) on canvas. 3-2020.

Challenges And Painful Times

In order to fully comprehend how this painting came about, I need to share some of my trials. You will often find in this life that those artists that share their work that comes from somewhere deep down inside have a very trying challenging story of pain to go along with the creation.

I can remember laying in bed one night in 2010 in our Florida home. My husband of seventeen years, Rich, was turned on his side, sleeping peacefully beside me. I was wide awake, thinking some very unsettling thoughts. I clearly remember being surprised to hear myself whisper out loud, "Who in the hell is this?" I had a feeling of foreboding. Little did I know then, it was going to get worse. Much worse than I could even imagine.

Eight years and 2,400 miles from that night, 2018 turned out to be one of the hardest years of my life. In October 2017, my husband was fired from his ten-year job unexpectedly by a new manager that he says he had never heard of before. It came as a phone call on a Friday morning. His career as a CDL A professional truck driver came to an abrupt end. He was a shining star now becoming a falling star.

In the spring of 2018, our relationship with our landlords also changed. We used to be more like friends with them rather than landlord-tenant. When our two-year lease was up (just two-and-a-half months after realizing Rich was seriously ill), she decided not to renew it. She made the new rent increase way out of our reach just to get us to move on. I thought we had found our "forever home" but that was not to be.

What this did mean is that I had about 6 weeks to find a new place to live and get moved. This happened early in 2018 and lead to 3 moves in one year. Of course, Rich could no longer drive or help me pack. It was all on my shoulders. After researching, I also found out that senior low-income housing had at least a four-year waitlist. How in the world was I to make this work?

His health and mental condition (not yet diagnosed at this time but we were undergoing thorough, extensive, and expensive testing), made him unemployable. I was in training for a new work-from-home business. Neither one of us was employed and we only had our savings to survive. Somehow with God's help and carrying us through this devastating time, we ended up moving three times in 2018. The family was a huge support at this time. I have no idea what we would have done without God and family!

Finally A Diagnosis

My husband's personality change and strange behavior received an official diagnosis. While the news was a relief on one hand (finally had a name for what was destroying our lives), it was devastating at the same time. The relief I felt was because then I knew my husband did not choose to leave our marriage or stopped loving me. He was ill. He was as much a victim as I was.

It's an insidious disease. I have concluded that over the course of about eighteen years or so, we went from being happily married and best friends to where I was heartbroken, forced to seek marriage counseling, and dealing with a sometimes aggressive, mostly apathetic, seemingly depressed, self-centered and lazy husband. I didn't recognize this person living in my home at all. My humble, caring, humorous, and loving husband was nowhere to be found.

This diagnosis is a death sentence. A slow agonizing disease with no cure, no treatment. It is so little known that there are no answers as to how, why, or what your version of it is going to be like so that you can prepare yourself and plan for your new reality. It literally robs you of the person you love. They leave you little by little each and every day. What you are left with is just a dim shadow of the person you knew.

Instead of calling it by its proper disease name, Rich and I call it the S.O.B.; that way, Rich won't feel bad when his behavior is off the charts. It isn't him, it is the S.O.B., which gives us a common enemy. This helps us both to deflect the focus and to disassociate the disorder from him as my husband. Neither he nor I have any choice in the matter. His illness is here to stay. Many physicians and medical doctors are not aware of this disease so to receive the best care, you have to educate them about the disease. Or, better yet, do like we did. Research and find the most knowledgeable and experienced primary care physician and neurologist that know FTD when they see it. (Like you aren't already dealing with enough).

I must add here. It is very important to get a correct diagnosis so that the behaviors and symptoms can be regulated for peace, comfort and safety. It is never advised to give someone with FTD Alzheimer's drugs! It can actually hasten decline and lead to death much quicker. Don't let anyone tell you that your loved one has "dementia" and leave it at that. Find out exactly what is going on. Some people have treatable symptoms that mimic dementia so get to the bottom of things.

On average, life expectancy is about eight years from the onset of strange behaviors. We are at the 20-year mark in 2020. Rich will be 69 in August. It's been a long painful journey. Rich has anosgnosia as one of his symptoms so as near as we can tell, he's oblivious to this reality. He is aware of his diagnosis and knows that he's terminally ill, but he's not fully aware of what this means. I think that's a blessing. I, however, as his 24/7 Caregiver, am painfully aware of all of its nuances, twists, and turns.

It's called Frontotemporal Degeneration, or FTD. Choosing to be a Caregiver for someone with FTD is not for the faint-of-heart. It causes many divorces (FTD persons not using good judgment cause a lot of serious issues and disruptions). Sometimes the FTD person (often not diagnosed yet) files for divorce shocking their spouse and family as it seems to come from out of nowhere. Or, spouses of an FTD person just can't handle all of the changes and find they are living with a complete stranger that isn't a very nice person. Sometimes FTD people become a danger to themselves and others. Statistics show that many times being a Caregiver for someone with FTD just may kill you, the Caregiver, before the FTD person. Then FTD kills two people.

The show 60 Minutes on CBS aired a show introducing the American public to this disease. On the show, what we were facing was called The Cruelest Disease You've Never Heard Of. What Is Frontotemporal Dementia? CBS has aired this show three times so far (link below). It reached a pretty broad audience and got people's attention. For that, people living with what is now called "FTD," we are grateful.

The show mildly depicted the various disorders identified and associated with FTD. It didn't come close to reality, but at least the topic of FTD was out there. Rich was diagnosed with one of the most challenging ones, bvFTD or the behavioral variant. By not leaving the show available for free for everyone, I feel it's a great disservice to the public.

Since the show is still bringing awareness to Frontotemporal Degeneration, I think it should be free for anyone to watch. CBS has chosen to make it available only to subscribers. Knowledge and information take a back seat to profits once again.

Like me, unless you are aware of the existence of FTD, your loved one's strange decisions and personality change will leave you exasperated. You won't know what it is you are dealing with. It is like a thief in the night stealing the very soul of your loved one. This is not like Alzheimer's at all. It is not "an old person's disease." Yet, Alzheimer's appears to be the only dementia the general public is aware of. That was my experience as well until Rich's diagnosis.

My personal goal for sharing the show on social media and its contents was to warn people that this set of symptoms known as FTD strikes young people in the prime of their lives. For Rich, I think he was around 48 years young at the time. It began with an unexplained mini-stroke that came from out of nowhere. But, there are cases of people in their twenties. Diagnosis at a young age often brings with it financial devastation. Make sure you have short and long-term healthcare coverage!

You may also be surprised to learn that often persons with FTD don't qualify for hospice when they really need it because hospice uses Alzheimer's criteria and FTD is not Alzheimer's. FTD persons often die before receiving hospice services because doctors cannot determine when they are within a year to six months of dying. As a Caregiver, you are often in the dark as to where you are at in the journey.

The stress as a Caregiver is indescribable. You are always on high alert waiting for "the next thing." You are in a constant "on the edge of your seat" state of alertness while also dealing with the physical, mental, emotional and spiritual changes of someone you love. It will test you on every single level, and even some you may not have considered.

Three Moves, Then Back Home To Michigan

After moving back to our home state of Michigan from Arizona, there was so much to adjust to. Family got back to their normal busy lives. We got settled into our new apartment. Then reality set in. We were on our own.

The family was there if we had a dire need, but they were struggling with their own new grief in their own ways. I had years to adjust to Rich's condition. For the family, it was like an open fresh wound. We had to respect their journey as well.

We had been living in southwest Florida for nine years and then the Sonoran Desert in Arizona for four years. We had not been in a real "winter season" for about 15 years. That in itself is a huge adjustment.

I call November in Michigan "doom and gloom." I found myself seriously dealing with seasonal affective disorder (SAD) and anticipatory grief. For the first time in my life, I was dealing with depression. It was all just too much for my heart and body to bear.

When I realized the seriousness of my situation, I decided to do some research on services that were available in my county. If I couldn't take care of myself, I certainly couldn't take care of Rich.

I found Senior Resources. I set up an appointment with an in-home counselor. I now call her my angel! She listens to all of my concerns, past, and present. We discuss topics that I cannot discuss with family or friends because it would be "tmi."

God Gave Me A Vision

About March of 2019, I was just starting to come out of this depression with my counselor's help when God gave me a vision. Every time I think about it, I am taken right back to exactly how I felt at the time.

I found myself standing in the middle of a grassy meadow in deep stillness in the middle of the night. There was a warm gentle breeze that rustled the leaves on the birch trees. I could hear a flock of Canada Geese in the distance, winging their way to a new feeding ground. The crickets were loudly singing with joy as they waited all year for this, the summer season.

As I adjust to being placed in this scene, there's a hush over the meadow. The crickets still, the breeze ceases to stir. There's a heavy feeling of anticipation, like something extraordinary is about to happen.

Then, a beautiful apparition moves past me. To my utter surprise, it's an Angel. A Heavenly Being glides silently above the meadow lighting the grass and the flowers of the meadow with a soft glow, just to my right. She doesn't seem to be aware of my presence. All of nature seems to be in awe of her presence. She gracefully glides to a stop, extending her arms and raising her glorious wings. There is a magnificent full moon that captures her attention. She slightly raises her gaze to its magnificent beauty and begins to pray.

At this time, God let me know that she is my Angel. She is praying for me! Spirit told me to paint her and name the painting, "In Supplication."

The crickets resumed their serenade and the birch leaves began to whisper... they were telling the story of how one night an Angel appeared in the meadow.

I cried tears of joy! He had given me such a special gift! I felt so undeserving of His attention and unconditional love. Yet, I needed it so desperately.

I started painting right away the next day. I got the sky and the moon completed.

I have to explain something that I'm not sure I'll be able to convey clearly with words so that you'll understand.

I may be the one creating the composition, mixing colors, applying each and every stroke and detail. Yet, I am just as in awe as anyone else at the results! Why? Because He is working "through" me. It is His message, His gift... I am a humble tool. And it's a privilege.

This painting inspired a poem:

In Supplication

In the deep stillness of the night, After the farthest stars wink awake And the sun has gone far from sight, Thoughts can become too hard to take. So many loved ones, no longer living here. Memories funneling quickly through my mind. Loneliness easily sets in, expressing a tear. God says my purpose is to be loving and kind. Days quickly slip by, trying to keep my heart pure. I seem to weaken from daily effort and strain, My journey seems in shadows, the road ahead unsure. I cannot focus on self-doubt, negativity and pain. Instead, I turn my focus, my heart and thoughts to Love, Love of all the Earth, Creator of the Moon, Stars and Sun. He sends His Guardian Angel, with the whir of golden wings from above. She prays in supplication on my behalf, to the Risen One, the Son.

This painting project ended up being put on pause... for a year. I was just too busy dealing with Rich's needs, his various steady and inevitable declines towards the end of his journey.

I have to feel at peace and connect with God in order to work on projects like this one in order to convey His message. I was struggling with making that connection.

With the Coronavirus Pandemic underway, we have been on lockdown since March 13th. I NEEDED the Angel part of the painting completed ASAP!

Somehow, God's Spirit helped me to finish this painting. I believe that the hardest part of dealing with my husband's illness is just ahead. I truly needed this painting project to be finished to help uplift my spirit. He was reassuring me that I will never be alone. Even after I become a widow for the second time, He will be there for me.

Just in time for Easter 2020, it is done. When I sign the painting, I never touch it again, except to protect it.

I hope you can feel God's presence when you look upon it and feel comforted knowing that God has His Angels watching over us.

Be well, be blessed.