Further Neurology Diagnostics

My dementia spouse immersion program is proceeding with intensity and verve. After our first brush with a neurologist whose diagnosis of MCI reported on earlier this year; we decided to seek further information. With our home-base being in the Caribbean, we decided to stay medically near my grand-daughter. As a mecca of national think tanks and healthcare options, we proceeded to investigate. The royal “we”, a term we joke about as things progress. Meaning I do all the work while he interjects. The quality of interjection is for another post.
So about eight months ago I proceeded to contact several nationally known memory clinics. Two were rejected by my spouse due to cost. We settled on a memory clinic with excellent affiliations that accepted our insurance with an acceptable co-pay. They were proactive in getting referrals and the insurance claim number. Due to my husband’s refusal to leave our home (sailboat) during hurricane season, Dec. 18 was our date. It was a date that I built holiday plans around, solicited boat/cat sitters around, scheduled an outpatient surgery procedure around.
The first breakdown happened five months out, when the comprehensive caregiver questionnaire about symptoms and burden was lost by USPS, priority mail. Much phone time and investigation resulted in $50 + of consolation, no paperwork. Then the memory clinic sent a different set of paperwork, comprehensive but lacking the caregiver input . . . when queried, they assured me it was the same paperwork. So now, I, the caregiver have had to defend my memory to both the USPS and the memory clinic regarding their address, their paperwork. Keep in mind this is being done from the civility of Puerto Rico . . . far better than that of Haiti or Dominican Republic, but a world away from the civility of the states. So I filled out the paperwork, had a family member who works at the hospital deliver it.
Four months out begin trying to get an MRI report and disc to the memory clinic from a neurology visit in 2012. The neurology practice had archived that information, gave me the email address of the archiving company. We, my spouse loves the technology piece, emailed the medical release unique to this organization. We received confirmation that the report only was available and would be sent to the memory clinic. Two months later, no report had been received. Meanwhile Mike and I are scratching our brains to remember where the MRI had been done. Without the report we had no clue where it had been done.
It was in October, when I called the memory clinic to once again see if they had received the MRI report, only to be asked by a new receptionist where she would find this report. .. . I suggested my husband’s file . . . after being put on hold, she returned to say “we don’t do that no more.” Using my dementia skills, I centered, and proceeded to piece out what that meant. The primary dementia expert had left the clinic for one in another state. I asked when they were going to let future appointments know. After a hold, she had a neurologist speak with me and convince me that it would all workout for the best, or better. So I was placated. Then I received the questionnaire and appointment card . . . the same questionnaire that I had filled out the second go round.
The appointment was with an unknown PsyD. When I called i.e. the questionnaire, I was told it was a different one. Fortunately, I had a copy so I knew I was not yet a candidate for the memory assessment. That evening Mike and I decided to cancel the long awaited for appointment. The one that was going to answer all our fears, determine our living arrangements, and cure all that ailed us. Starting from scratch—stay tuned.

Author: Cate
Passionate about dementia care and quality of life throughout the last days of life----sums up Cate McCarty, Dr. Cate, Dementia Coach. With close to forty years of long-term care experience in nursing and recreation, a Master's in Thanatology and a PhD in Aging Studies, Dr. Cate seizes every opportunity to translate research into quality of life for individuals with dementia and all of us who have the honor to "rub elbows" with them.

1 thought on “Further Neurology Diagnostics

  1. Thank you for sharing your personal journey. To think how many families are experiencing the same frustrations and challenges as you and to think, you are a knowledgeable health care practitioner. The need for quality health care is paramount regardless of disease, however with the statistics showing the tsunami we are about to face, why aren’t there better diagnostics available? How can we help those in need when the services needed are so limited? Are our heads still in the sand? As a society do we not see the need? I hope not…sending you hugs and strength from afar. Stay strong, stay positive and most of stay hopeful. ♡

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