Sunday, May 29, 2005

define and guard your own Thermopylae or Alamo

Something unique will sustain each caregiver. I must stress this because I‘ve found no formula for success through nearly two decades.


I couldn’t help but notice and feel honored by the kind comments to the previous post. However I must express caution to any reader.


“Love” I do not believe is enough. Maybe I just avoid the word as a manly-man but I think emotions are too unstable for a foundation. I can hear Tina Turner’s scorching lyrics, “What’s love got to do with it …


I always caution looking at the picture from how you feel about the person in need. Progression will change that person, especially in cerebral functions. Caregiving will change the dynamics of the relationship.


Caregiving can be more often like trench warfare. It is often too difficult to even see a higher purpose or meaning.


It’s only natural to wonder if some one can make it or be depended on. I believe the answer is more in the character of the person.


Not everyone is capable of a Stoic indifference to his or her own existence.


In a sense, you define and guard your own Thermopylae or Alamo, a stand that cannot be won. Except unlike heroic moments in time, caregiving is just trying to get through the day, day after day, knowing that the future holds only progression. 


Even more difficult is eventually knowing your limitations. The safety and well being of the person in need can be muddled by caregiver pride and or hobgoblins of 24/7 care. Help must be a door left open not closed.


Every story will write itself differently. Our story was focused on raising a daughter and trying to keep a family together. MS made Patti a dependent in that story 15 and a half years ago and progressively ravaged her abilities physically and mentally.


For example that focus must shift with our daughter finishing junior year in high school, Patti is lost in all the college search and application mumbo jumbo. The caregiver hat needs to shift to parenting.


Every caregiving situation is unique.  ...  I applaud every caregiver who tries!



     Trying to share what living with MS is like from the caregiver spouse point of view.. Patti (49), my wife, has been diagnosed with MS for 19 years.

     In Journal Archives, WHY SHARE? (4/27/04) through YEAR IN SUMMARY: Part 5 of 5, Was It Worth It? (3/18/05<) chronicles our transitional year from home caregiving to the care facility era.              


Friday, May 13, 2005


     Trying to share what living with MS is like from the caregiver spouse point of view.. Patti (49), my wife, has been diagnosed with MS for 19 years.

     In Journal Archives, WHY SHARE? (4/27/04) through YEAR IN SUMMARY: Part 5 of 5, Was It Worth It? (3/18/05<) chronicles our transitional year from home caregiving to the care facility era. 


maintaining involvement in family life

Maintaining involvement in family life is an appropriate entry, I believe, to talk about in this post transition year.


Yesterday was an opportunity to include Patti in a family dinner. Sounds simple? … 4 and a half hours later that ‘simple’ task was wrapped up. <grin>


60% of that time was devoted to logistics including transportation, getting Patti up and dressed, changing Depends, transferring, cutting up food, etc.  I didn’t carry a stop watch but did make use of a pocket note pad.  --  Patti’s care facility is only 18 miles away, so two round trips involves 72 miles of driving out of this percentage of logistical support time.


Any visit home has parameters from all involved. Patti’s desire to go to bed by 7:30 PM may as well be written in stone and on the front end Megan has to get home from school and I need to juggle time and work in the late afternoon.


In the post home caregiving era we get out of sync with the total and absolute commitment that must be made when Patti is at home. We can juggle nothing else such as a typical daily activity like mowing the lawn, run an errand, homework etc. … And Patti after a year in a care facility is accustomed to constant and fresh staff attending to her and her needs and wants.    These “different worlds’ we’ve all become used to living in can take some adjustment when we are back together. Instant adaptation is more challenging for Patti who as a result of MS progression is easily confused and frustrated.


Maintaining involvement at home is a gamble. I roll the dice because I believe it is good for everyone and I hope they don’t roll up showing craps.


Putting Patti to bed less than 30 minutes after she left home, she could not tell me ‘what’ she had for dinner, nor ‘where’ she ate dinner, nor ‘who’ she ate dinner with. MS has destroyed her short term memory. I can only hope that in the morning that her evening of family time has slipped deeper into longer term memory and she may remember.

Thursday, May 12, 2005

transfer to vehicle

Until recently transferring in and out of a car has been a blessed enigma to Patti’s MS progression. That quirk has enabled her with opportunity.


Sadly over the last several months her ability has been fading. Increasingly attempting to transfer to and from a wheelchair and a passenger car places both herself and anyone helping her at risk.


Unlike a bedroom or a shower no Hoyer sling lift, or Posey belt, nor are multiple attendants of much help in the confined space and limited opening of a car door.


Loss of this talent for transferring dramatically changes Patti’s access to houses of family, friends, and the outside world of restaurants, movies, and more.


Tuesday I spent nearly an hour unsuccessfully working with Patti, and her physical therapist trying to safely transfer Patti to and from her wheelchair and our family car. We tried transfer boards and Posey belts. We tried front vs back seats, and left and right sides of car.  We exhausted all logical ideas and devoted time to thinking outside the proverbial box.


For months I’ve wanted to blame anything except progression. However, every symptom and issue has been systematically isolated and treated. Accepting progression is more difficult from the outside looking in. In reality Patti is unable to participate in any other transfer such as to bed or shower chair, etc.  It really was amazing that her ability to transfer to a car remained as long as it did. (In fact she still can somewhat transfer ‘out of’ the car to the wheelchair – just not ‘into’ the car. MS is always strange in its manifestations).


Whatever, the bottom line is for the consistency of Patti’s safety and the safety of any one attending her we must enter a new transportation era if Patti is to be able to dependably experience the freedom of opportunity.


This of course may seem odd that we do not already own a vehicle with a lift or ramp. However neither house we’ve owned has ever had a ramp or “visible” ramp. In the past Patti never wanted such things. She “could” transfer therefore she “would” transfer. In days of long ago, she 'fought' progression however she could even if irrational.


Until I figure out something involving a wheelchair accessible vehicle at least I have the physical strength and “can” still lend her a hand and wrestle her in to our car and the opportunity for adventure.


There's an appropriate line from a poem by Robert Burns, borrowed from a song of the dawn of time in the Scottish Highlands: (today butchered by drunks on New Year's Eve as Auld Lang Syne <grin>)


“… And there's a hand my trusty friend!

And give me a hand of thine! …

For days of long ago.”

Friday, May 06, 2005


Basically the past year of transition has been followed by a year beginning with a sense of drifting. Home caregiving was an anchor in many ways.


Maybe for no reason except that I labeled it a “transitional year” the past 12 months had a focus. Yet home caregiving was intertwined with daily existence for so long its removal leaves behind a maze.


Now I find myself doing something and wondering why am I doing it that way? So many little and big details of daily living and planning evolved to accommodate home caregiving. Past the transition is uncharted water.


Recently three topics have kept my attention:



Over the last month or so I’ve raised this thought of the possibility of Patti returning to homecare with facility staff, and Patti’s doctors. They stare at me as if I might need admittance to a mental facility.


I’m always directed back to the universal medical opinions of Patti doctors, neurologists,and visiting homecare professionals that Patti should have been in a 24/7 care facility a couple years before I ever raised the white flag on homecare.


What I see that is positive in both Patti’s quality of life now and that I even have time in my life to think about it - is BECAUSE Patti is in 24/7 professional care.



Even the NMSS labels the success of such programs for MS as “mixed results”.  And ‘mixed results’ is not the kind of endorsement medical insurance invests thousands of dollars into for rehabilitation for a progressive problem. Optimally such rehabilitation is designed following a brain injury rather than a progressive disease. Patti’s neurologist and doctor were not optimistic.


So like many times before I create what I can. Learning whatever is available and customizing that for Patti. Bocce was a prime example of an experiment in home made cognitive rehab.  



Preliminary Results Are in for 16-Year Follow-Up of Betaseron Study

"To date, patients … in the pivotal trial are more likely to report continued ability to walk …”  “the mortality trend among patients in the placebo arm appearing to be threefold different than that of patients receiving Betaseron," The full report will include data on functions such as memory, attention, and reasoning, …"

This will always be a sore topic for me. Patti’s neurologist fought nobly and desperately to have her included in those original “pivotal” Betaseron trials. 


Berlex the drug manufacturer rejected her from the trials. They wanted people with the mildest and least noticeable MS symptoms in those original trials. They were stacking the deck for approval. Too much was at stake. Those original trials were as much about money as about MS. 


Once the drug was approved Patti got a letter from Berlex assigning her a lottery number and informing her how wonderfully Betaseron could help her slow progression. (Even though they had rejected her earlier when she was even less progressed.) The cruel twist of fate wasn’t done. Our medical insurance would not approve Betaseron because Patti had been rejected by Berlex for the Betaseron trials and that remained in her records.


Yes I know this is negative energy, I should instead be happy for those people Betaseron has helped.

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