My husband, J, has been a patient at the Memory and Aging Center for the past four years. He is enrolled in the FTD clinical research program and has been in the memantine study. Now 57, he remains somewhat of an enigma to the doctors and research staff, as even in his dementia he refuses to be "in the box," with behaviors that cross the lines between Alzheimer’s and frontotemporal dementia. This is typical of J, as throughout his life he has truly marched to the beat of his own drum.
But something began to change about 10 years ago. His behavior has become progressively more bizarre and difficult to deal with. In addition, his short-term memory has become non-existent. In the beginning, I was the only one able to see the changes in him since they were very subtle and could easily be mistaken for increasing eccentricity or perhaps a "mid-life crisis." J was 47 at the time.
I took him to our family doctor, who diagnosed ADD and tried a variety of medications, all to no avail. Although our family physician is a very kind and compassionate man, he was only placating me as I am sure he did not really believe anything was wrong with him. I questioned it myself as most of the time he seemed "normal," but like a slow fog rolling in, it gradually took over more of his life. It is that insidious onset that is so disarming. I learned to adjust to his limitations without even realizing it at first. Soon, you forget what your life was once like, and like the fog that takes over the Central Valley in the winter, it is easy to forget how the world looks when the sun is out.
When I first took J to a nearby neurologist, I was told that he had either a brain tumor or Alzheimer’s and that I should hope for a brain tumor. When the brain tumor was ruled out, I was sent on to a couple of "specialists" in the area. The first one told me, after extensive testing, that there was nothing wrong with him and that he should get a job. Despite examples I provided of his lack of insight and judgment as well as function, I was ignored and told only that I should be "more vigilant" in my supervision of him. Another "specialist" diagnosed him with Alzheimer’s and prescribed medications to delay the progression.
I read as much as I could about various forms of dementia and believed that he in fact had frontal lobe dementia. It had become impossible to rationalize with him. His behavior had become erratic and impulsive, and his ability to do things around the house was deteriorating. J had always been good with his hands and was a jack-of-all-trades. There was nothing he could not do. Now he will start projects but be unable to finish them, seeming to have forgotten. When asked about the project, he often has no recollection and denies any responsibility.
In March 2002, J was evaluated at the Memory and Aging Center FTD research program with four days of extensive testing. This was the first time that I felt my concerns were really taken seriously, though even at that time he still appeared to be pretty normal and functioned fairly well in most areas of the testing. It has been almost four years, and J’s decline has been significant.
At home, there are few things he can do for himself, and safety issues are becoming a concern. One of my biggest frustrations as a caregiver is his total lack of awareness of the problem and the chaos he creates on a daily, if not hourly, basis. He still walks our golden retriever Mollie almost daily, sometimes taking her for miles at a time. J refuses to leash her as he does not believe it is necessary. True to form, Mollie stays right at his side, even in rush hour traffic. I truly believe they both have a protective angel on their shoulders. To the casual observer, J seems normal or maybe mildly eccentric, but he has a tremendous gift of demonstrating interest in others and making others feel good about themselves. He has standard greetings that he throws out to strangers, and they inevitably walk away with a big smile on their face. Even in his dementia he has a charisma that draws others to him. He even fools me sometimes, and I wonder which of us truly has dementia.
J was a special education teacher and executive director of a couple of associations for the mentally handicapped. He had been an advocate for the mentally challenged his whole adult life and was a tireless advocate for the disadvantaged and disenfranchised. How ironic that he has now become one who now needs that compassion and empathy from others, although he is blessedly unaware of this need or of his inabilities.
Life with J is definitely a challenge. His favorite expression in life was "Your worst experience is your best," and I am trying to appreciate his perspective. I have been told that in life we are given certain situations to deal with "because we can." Sometimes I can, and sometimes I feel as if I cannot or do not want to. But then I remind myself that I am not in charge and that I am only seeing a small piece of the puzzle. So, I do my best one day at a time and rely on our children to help out when they can. The children are now all young adults with busy lives of their own, and I am so proud of and grateful for their willingness to step up to the plate and help out.
~ LT