My journey trying to get the right diagnosis, treatment and care for my mother's dementia over the last eight years has been long and difficult. I am involved with the Alzheimer's Association Connecticut Chapter because it installs hope in the face of hopelessness watching my mother slowly lose her memories.
It all started back 2007 when my father suddenly passed away because of a heart attack. It was at that time that I suddenly realized there was something terribly wrong with my mother's memory. When I think back I remember that there were slight changes that I overlooked leading up to this point.
I was frantically trying to figure out whether I had missed something or was her memory problems a result of shock from my father's death. I decided to set up an appointment with her internist and after expressing concern about my mother's memory I was promptly chastised for being insensitive to the loss of my mother's husband. I was so disappointed by the doctor discounting the significant memory issues I was so concerned about. I then decided to try to contact my mother's psychiatrist and he responded by refusing to talk to me unless I came in with my mother. I felt trapped not knowing how to get this issue addressed. I finally agreed to meet with the psychiatrist with my mother after waiting to get through my father's funeral in addition to being concerned about overwhelming my mother. Her psychiatrist became defensive and discounted my concerns. In addition, he expressed that my mother's memory issues were a result of grief and PTSD from my father's death.
Over the next three years the problems with my mother's memory worsened. Her psychiatrist continued to refuse to look into the possibility of a coexisting medical condition. I was worried about my mother having a possible occluded carotid artery or worse a brain tumor. My mother refused to go to a neurologist or any other doctor for a second opinion since her psychiatrist continued to express that it wasn't necessary.
I had many years experience working as a critical care nurse. One would think the experience would help but it actually left me feeling helpless and frustrated that I was unable to find the professional help I needed to address my mother's memory issues.
After repeated attempts to communicate my concerns, her psychiatrist decided in 2010 that it would be best to increase her therapy sessions to 3 times per week to address the memory issues. At one point in 2010, she had a memory test by a psychologist ordered by her psychiatrist that showed moderate memory impairment with the recommendation of follow up with a neurologist. My mother and her psychiatrist discounted the finding as being influenced by my input.
In 2012, my mother's dementia worsened to the point that she was having trouble living alone in her home. She was frequently refusing to answer the door and was isolating in her home. I was receiving calls from her neighbors and accountant expressing concerns about her memory. I was able to get her into an assisted living facility after trying unsuccessfully to arrange home care. It was a significant relief to finally receive professional guidance from Eleanora Tornatore Mikesh and Barbara Newland at The Greens at Cannondale to help me navigate the care my mother needed.
I am concerned at how difficult it was for me to find the correct diagnosis and obtain care for my mother. I can't help but think about other family members who are experiencing the same level of difficulty trying to get the right diagnosis and care that is needed. It is important for physicians to encourage patients with dementia to involve their families and or significant others. Along with putting together a plan of care there are safety measures that need to be considered such as addressing the ability to drive safely. It has been one of the most difficult experiences I have ever gone through. I hope in the future we will one day soon find a cure for this horrible disease but till then we need to improve the screening and care for those who have memory loss due to Alzheimer's disease/dementia. I also see a need for dementia care education and training of caregivers and nurses aides providing care. It would be advantageous to have an awareness campaign for doctors in Connecticut to address the needs of those in the early stages of Alzheimer's disease.