Inspiration Behind My Painting, “In Supplication”: Part 2
Love can be precarious and takes balance.
Rich’s health and mental condition (he was 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! It’s just too bad that the assistance we received from the majority of the family was only for a short time.
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 was 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. Your loved one deserves this.
On average, life expectancy is about six to eight years from the onset of strange behaviors. We were at the 20-year mark in 2020. Rich turned 69 in August 2020. It was a long painful journey. Rich was experiencing anosognosia as one of his symptoms so as near as we could tell, he was oblivious to his true circumstances. He was aware of his diagnosis and knew that he was terminally ill, but he was not fully aware of what this meant. I think that this was a blessing for him. I, however, as his 24/7 Caregiver, was — and still am, painfully aware of all of its nuances, twists, and turns.
Are you familiar with how Cancer is an umbrella term that covers a multitude of different types? Well, Rich was initially diagnosed with what is called Frontotemporal Degeneration, or FTD. It, too, is an umbrella term for a multitude of underlying sets of symptoms.
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. Read more…
