This is the description voiced on many a report about my father from 1960 up until a couple of years before he passed in 1997. As I may have told you earlier, he suffered from Frontal Temporal Dementia. Back in the ’60s this condition was described by his doctors as organic brain disease. The name FTD refers to the part of the brain affected – the frontal area that controls impulse and judgment.
As my dad’s condition deepened, our family – my mother, brother, and myself – were torn between grieving for the loss of the father we had known to often being embarrassed and shocked by his behavior.
Initially he was treated in a private psychiatric hospital with electro shock therapy. As I think back on it, this treatment did little more than cause extreme mental confusion for a while until the underlying condition gradually surfaced again. Eventually, our mother reached the point where she could not keep our dad in a private hospital and he was committed to a state hospital. These were troubled years for our family. My brother was a teenager living at home. Our mother was now the sole breadwinner for the family as a classroom teacher. I was spared a lot in that I had begun college and was away from home during the school year.
In the late ’60s and into the 1970s our dad spent considerable time at home under a regimen of psychotropic drugs to keep his mind calm. Eventually his behavior would again become so stressful that our mother’s health was at risk and he would be placed back in institutional living, first in another state hospital briefly, then in a group home two and a half hours away, and then in assisted living in the town where my brother lived.
He had the best living arrangement of all during that time – good food, a clean private room, and the freedom to enjoy walks along the shaded sidewalks in a lovely neighborhood of stately homes. He was good on the guitar and would be asked to play for the other residents. Life was good for a time, and then another episode would occur where he would make some move on an aide and our mother would be informed that he could no longer remain where he was.
This went on until around 1995 when he was dismissed from an assisted living he had enjoyed, and suddenly no place would take him. I remember the call from my mom. That particular time I had packed a small bag to load in the car for the trip to Virginia and then drove off without it, realizing far down the road what I had done.
I made call after call to many places in the state of Virginia, and there was ‘no room in the inn’ for our dad. It came down to one assisted living in Columbus, Ohio that agreed to take him, one that was clearly substandard. He was placed in a room with a roommate whose behavior was violent at times. My dad would try to share a few of the snacks we had given him, and the roommate would throw them right back. Eventually the roommate was reassigned and my dad had the room to himself, but then it became rarely cleaned. The floor would not be vacuumed for a time. I took cleaning supplies and cleaned the room as best I could.
But there was a very good side to the move to Columbus. We were able to get him under the care of a very good neurologist who prescribed a strong drug (another psychotropic drug) that allowed us (my dad and me) to have some quality time. The sexual episodes became a thing of the past. He was able to make many day trips with our family and was able to come and spend days at home with us. We went out to nice restaurants. (I am so glad we had this time.)
And then he became ill with colon cancer in the late summer of 1997 and went to a nursing home where hIs last several months were filled with love and compassion.
I say all of this because I have discovered that not a lot has changed in the past 16 years for people with illnesses that elicit inappropriate behavior. A friend of mine whose husband is in mid to late stage Alzheimer’s was able to keep him at home for many years with the assist of adult daycare. However, when his condition deepened the time came when he needed inpatient care. He was placed in a lovely assisted living for a few months. However, his behavior became a problem and his wife was given a deadline for him to leave. She spent many anxious days searching for a place she could afford where she felt he would receive compassionate care. She eventually found a place that she could afford but definitely not fitting in the ‘top 10’.
Another friend whose husband suffered from Alzheimer’s and whose behavior resulted in his dismissal from inpatient care, chose to pay for round-the-clock care at home for his last several months.
Good care, if it can be had, may come at a cost for loved ones with dementia exhibiting inappropriate behavior.