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.
The same perspective shift that I am experiencing as a spouse of someone reporting memory decline. As I, Dr. Cate, Dementia Coach, try to practice what I preach. As I try to be pro-active in assessment, in long-term planning, it surprises me how difficult it is as a spouse. Yes, I am embarrassed by that last statement. It is a world of difference when it is your husband. So far we have a neurologist’s decree of possibly Mild Cognitive Impairment. My training prods me to not settle. We will be seeking a more thorough assessment. But for now, we are enjoying each day. My husband has been overwhelmed with my pro-activity, unhappy with others’ knowing. And so it goes. A world of difference from a different perspective.
Research shows that caregivers who manage to sustain self, first reflect on past experience. In my tough times since my 20’s, I always have used the birth of my children as my touchstone. When things get difficult, I remember I labored three times with three amazing children as the result. Mike and I jointly labored through the grueling dissertation process, through the wind-on-the-nose Caribbean process. If we got through those successfully, we can get through this “near and present danger”.
My daughter says that every time she looked at me during labor, I was crying. They were tears of amazement and of love. Throughout her labor, she and her partner/spouse were incredibly engaged. It was a partnership to rival all. He was awake and responsive to her every need. I was moved to tears by their teamwork. This was so far from my personal birth experiences.
When my grand-daughter’s entrance to the world was seemingly imminent, twenty-three or so hours later, my daughter’s energy was low. my son-in-law’s role as coach became all that more vital even though he too had had no food, little hydration, no sleep. “You’ve got this,” was his repeated encouragement, just one more push, “Almost there.”
So in a recent tour of seminars and marketing with dear friends and eldercare peers, I too benefited from partnership. As I pro-actively checked into our affairs, I felt partnership as powerful as that of my daughter and son-in-law. Partnerships for the journey. The coaches for the coach.
No matter what is ahead of Mike and me; regardless of the assessment results; I will need the premier partners and coaches so evident in friends and colleagues. And as we look to sustain self, we reflect back on dissertation, miles traveled upwind . . . and I will know “We’ve got this!”