An Evolution of Love

Life and Love with Frontotemporal Dementia

A Memoir

Bob passed away on April 7, 2006, from Frontotemporal Dementia (FTD) at the age of 50.  He struggled mightily with this illness and we struggled with him, gaining an even greater respect for this fine man, as he slowly succumbed to a progressive and irreversible form of dementia.

This book captures the memory and character of “Old Bob”—the Bob we knew before the onset of an illness that robbed him of his talents and capabilities.

It also shows the ways in which we learned to cope with and appreciate the “New Bob”—the Bob we cared for and lived with through the course of the illness.

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It is said that everyone brightens a room, some by entering, and some by leaving.  Bob was one of those who always brightened a room by entering.

Dave Peters
Friend and Best Man

Bob was a gentle man and a gentleman who always had a smile.  He was always there to help or listen and was someone who made you feel comfortable.

Dottie Fenimore
Friend of the Family

He had a huge heart and a pure soul.  You could tell by looking in his eyes.  I will always remember him.  He touched my heart.  He was an intelligent person.  His intelligence showed through his disease. God definitely broke the mold when He put Bob on this earth.

Jennifer Warren
Former Concierge, Sunrise at Floral Vale

I remember Bob fondly.  Paricularly his attachment to you, Marie.  I remember him stating he was going to comply with everything you suggested 'because I love you'.  Those were his words.  Quite a statement and motivation in the middle of his devastating illness.  He was a kind person and he was loved and loved you.

Ronny E. Antelo, M.D.
Bob's Neurologist

Frontotemporal Dementia (FTD): An Overview

To understand Bob’s struggle, one first must understand the nature of his illness—Frontotemporal Dementia (FTD). This form of dementia (there are approximately 55 different types) typically strikes adults at a relatively early age. Patients do not usually experience memory loss in the early stages, as do Alzheimer’s patients. Over the first few years, they are able to maintain language and visual perception capabilities.

Ultimately, however, they fall victim to changes in personality. They lose social skills and reasoning powers. Motivation and concentration abilities wane, and individuals stop relating (socially and emotionally) in usual ways. Since brain degeneration is not widespread in this early stage, afflicted individuals generally retain memory function. The disease, however, begins to attack brain areas that control reasoning, judgment and the ability to take initiative. 

FTD poses special psychological, social, family, and financial problems.  Issues that frequently differ in nature from those associated with Alzheimer’s type dementia. FTD strikes relatively early in life, often at a time when an individual is dealing with career challenges and family demands. Many afflicted individuals have not approached retirement age, and the impairment can seriously jeopardize the family’s financial position and overall security.

Links

Memory Walk
Assn for Frontotemporal Dementias
Alzheimer's Association
Pictures

Frequently Asked Questions

Do medical experts know what causes FTD?
Some cases are hereditary while other causes are currently unknown. There was no history of the disease in Bob’s family.
Is there any way to halt or reverse the disease?
The disease is progressive and irreversible. Certain medications can relieve some symptoms.
How old was Bob when he was diagnosed?
Bob was 47 when he was diagnosed, but we noticed personality changes a few years prior to the diagnosis.  They were subtle at first, but became progressively more pronounced over time.
Could someone have attended to Bob during the day, while you were at work? Why did you move him into an Assisted Living facility?
We felt compelled to move Bob into an Assisted Living environment. He was very mobile (and fast!). He would say he was going upstairs to “rest up” and then minutes later, he would be in the neighbor’s yard.  We lived close to a major highway, an ongoing safety concern.  Bob could get himself into a dangerous situation in seconds, even under the watchful eye of a “sitter.”  Moreover, we didn’t feel that Bob would respond well to an outside person providing supervision in his own home.  After all, as much as he wanted to please us, we still had difficulty keeping him away from dangerous situations.
Did your insurance cover the Assisted Living expenses?
Assisted Living is an entirely out-of-pocket expense. Long Term Care Insurance would have paid for this type of care but we never considered this to be something we needed at our age.
Were you able to take Bob out of Assisted Living for short periods of time?
We were able to take Bob out for doctor appointments, car rides, holiday meals at Marie’s sister’s home, to get his hair cut, to get a slice of pizza at the Food Court, etc. Bob went on occasional bus trips provided by Floral Vale.
Did Bob continue to recognize you and relate to you?
FTD differs from Alzheimer’s disease (the form of dementia that most people are familiar with) in a major way. FTD affects behavior more than memory. Had Bob lived longer, he probably would have lost the ability to recognize us. Fortunately, Bob always recognized us until he went on the ventilator.
Did Bob know that he had FTD?
Bob’s Neurologist delivered the news to us, and Bob was present when we received the diagnosis. He went through a period of denial and was unable to see that things had changed. As time progressed, we think he occasionally had a sense that he was changing, but we don’t think he was ever able to put his finger on it.
You reference taking Bob to doctor appointments.  Didn't Floral Vale have a physician on staff?
Floral Vale had a doctor who would have seen Bob, however we chose to continue to take him to our Primary Care Physician (PCP).  We made this decision because Bob was comfortable with the doctor, he knew Bob's medical history since he had been Bob's PCP for many years, and we were able to take more of an active role in Bob's care by being present for the appointments.  The physician that was affiliated with Floral Vale was not in the building on a daily basis and would have come to see Bob when it was convenient for him, and not necessarily when we would be available to be there.