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.