future

THE TWO FACES OF JANUS AND GROUNDHOG DAY — THE MOVIE

Janus

Even without the two faces of Janus, AD caregivers often see their tomorrows filled with the repetition of their yesterdays.

It’s January again and at times I want to ask, “Didn’t we just do January?” The answer coming back would be, “No.  That was last year and 11 months have transpired in between.”  I really know that, but there was something about that first day of 2012 which brings about thoughts of Janus the Roman God of New Beginnings after whom the month was named.  Being who he was it is said that he had two faces: one looking forward and the other looking back.  While Janus probably didn’t have my caregiving assignment, or if he did he never mentioned it, I see a disheartening sameness in my life while looking in either direction.

Being able to look back is a good thing, and in that respect we are much like the mystical god, but better because we who are mentally healthy can look back without needing a second face.  We have memory and can learn from history – especially our own.  We learn from making mistakes, taking wrong turns in the road, and what works and what doesn’t.  Furthermore, we can look ahead making daily plans, and plan for the future. My problem is constantly seeing more of the same thing coming in my tomorrows as filled my yesterdays.

Suppose that by looking back and ahead we see only repetition.  I guess that’s where I was as this New Year began; living in “Groundhog Day” – the movie – without the romance.  Bill Murray’s character Phil, an angry, arrogant, conceited jerk, had to keep repeating February 2, until his attitude changed, or until he got it right.  Andie Macdowell’s Rita, the love interest, eventually helped him through his maze of repetition producing a new, reformed and lovable Phil; a delightfully funny movie which Ken and I enjoyed together long before his Alzheimer’s was even suspected.

Remembering the movie, though, I found I was identifying with Phil’s frustration of constant repetition – without the laughs.  It’s true that I’m not tied to a stockade then released to perform certain duties, but it is the repetition of those twice-daily duties from which there is no escape: getting Ken up, cleaned and ready for breakfast each morning, and getting him cleaned and ready for bed in the evening.  (It is much more complicated and emotionally wrenching than it appears in my simple sentence, but long ago I promised myself to always be discreet in my writings about my husband.)

My caregivers, wonderful though they are, cannot do these chores alone.  I am their assistant, and I know I am blessed beyond measure to have them.  I also know that having Ken home is so much better for him, and me, than placing him in a care facility. Yet, the schedule inhibits my planning a totally free day.  No matter what I’m doing I must stop at designated times and with my cell phone in a pocket I’m always on call for undesignated times, which can put a damper on my project regardless if it’s at a crucial point or not, and help the caregivers.  That’s when I feel as if I’m living in “Groundhog Day” – the movie.

Admitting to me that I dread the routine I also recognize that the dread causes a buildup of resistance in planning my day.  Recognition is a first step.  While I understand that the day will be interrupted, it’s the accepting of the interruption that is difficult – and I ask myself – why?  After all, once involved in any project we can be interrupted in anything we do; altering our focus by a phone call, a visitor, a question, or a problem with the project itself.  Then I realized those interruptions are, not only easily accepted, but often welcomed as a mini-break because they were never built into the day’s plan as a constant, as is my husband’s clean-up time.

When Ken retired we became very spontaneous, often ditching less-important, flexible plans for some fun times spent together.  I suppose that loss of spontaneity is rather debilitating adding to the lack-luster feeling of sameness.  Actually, it can be rather hellish when time offers us no opportunity for change in our life; little variety,  few surprises, no rewards, no excitement and not much in the way of looking forward.

With that in mind, and as a caregiver who has been putting break time on hold during the past Holidays, I need to move headlong into the tomorrows and make positive plans for this coming year, and I’m the only one who can do it.  Not resolutions, just plans, even sketchy plans including projects and fun, but in the doing I’ll still need to schedule those time periods to accommodate my daily duties as assistant to Ben and Crizaldo which is a must, and learn to conquer my feelings of dread and resistance.  A recent email message offered a really great motivational shove: “Life has no remote.  Get up and change it yourself.”

It is essential for my own well-being to get out more with my movie group, my lunch group, and with Madalyn where we meet at Wendy’s for a baked potato with extra sour cream, butter and no salt because periodically we deserve a two-hour, carefree lunch.  I might even plan on painting the living room.

I know I don’t have all the answers to lighten up the tedious work of caregiving and the reality of losing my husband to this cruel disease.  What I do know is that I don’t want to live my life in the sameness of “Groundhog Day” – the movie – no matter how funny it was — because even never-ending funny without any hope for change can be hellish.

Photo courtesy of http://www.flickr.com/photos/forresto/4258770494/

Originally posted 2012-01-14 03:42:41.

FAMILY GENETICS, OR DON’T WORRY BE HAPPY

DNA molecule

Only time can tell whether Alzheimer's is transmitted through the gene pool, in the mean time live life to its fullest.

My mother was one of ten children: six girls and four boys.  Mother, Irene, and one sister, Elaine, were victims of Alzheimer’s.  It would appear that two out of the four boys were also stricken,  all developing AD in their later years. Keeping with those same statistics, several of the siblings died at or before they reached 60, with one in her 40s. Whether some of them would have succumbed to Alzheimer’s is pure conjecture.  Yet, the four out of 10 is 40%.

In retrospect, I would say the Alzheimer’s gene came through our grandfather who died in his 50s as a victim of pernicious anemia.  Possibly, AD would have come to him later in his life had he lived, but that, of course, is another guess.  It did not come to our grandmother who died at 84. She could be stubborn, a bit cantankerous, and a little forgetful, but her quirks didn’t seem to fall under the guidelines of anything from the Dementia Umbrella.  In that same search of the past and from the stories and memories my mother told about her early childhood including remembrances of her mother, I do believe my grandmother was afflicted with attention deficit disorder, ADD.  So far, and not to my knowledge, ADD does not fall under the Dementia Umbrella.

My grandmother was proficient, though, in being able to run a somewhat organized farm life.  In addition she had her own system of birth control spacing her babies every two years (having at least one miscarriage following the birth of Irene leaving a four-year space between her and the first son).  My grandmother’s last child, a boy, was born just six months before my older sister, making him more like a cousin than an uncle.

Mama’s sister Elaine seemed to have been a little off center all during her adult life.  It wasn’t as if she lacked intelligence, it was just the fact that she seemed to be what my sisters and I called, “a little bit dingy.”  She and her husband were childless, and, perhaps, that may have influenced her life of self-importance and indulgences.  With no one to be concerned with except Elaine, her world appeared extremely limited to us.  She seemed to skate on the surface of life like the water skitters I remember buzzing over the top of stagnant pools as the creek dried up near our grandparent’s property.  Our aunt was limited in her scope, never venturing beyond where her focus was, paying no heed to anything above or below the surface of her tight, little world.  Signs for actual AD diagnosis began to appear in her 50s suggesting she was a victim of Early Onset Alzheimer’s, and possibly before.

Her husband Ray cared for her at home, with the help of my sister, Janet, for as long as he could manage. When he could no longer cope, they reluctantly found a good full-care facility where Ray hovered over his beloved wife spending every moment possible.  However, during his visits it wasn’t at all unusual for Elaine to dismiss him in favor of the familiarity of other residents which left her devoted husband shattered.  Eventually, even the familiarity of the familiar became illusive for Elaine and little by little she slipped into the nothingness of AD leaving only her shell which seemed to cling to life with the tenacity of a last leaf.  She outlived Ray by most of her 10-year confinement as Janet continued to supervise her care.

As more and more is learned about the diseases falling under the Dementia Umbrella, I see concern looming over the horizon when Ken’s and my adult children speak of the possibility of AD in their years ahead. The knowledge that both sides of their paternal grandparents have victims, and a few of Ken’s first cousins developed full-blown Alzheimer’s the future can appear daunting for the next generation.  There is fear: of course they have fear and the ever-present question, “Will I be a victim?”

As we continue our discussions I mention that the jury is still out on me and my two sisters.  I get the glance and then a possible eye roll.  “Mom!  You’re not going to get Alzheimer’s.  What do you mean the jury is still out?”  Then I remind them that my mother was in her mid-eighties when we saw the first signs.   I also remind them that there is no history whatsoever of AD existing in my father’s family and their longevity also extends into a near century.  “Hello.” I tell them in an effort of reassurance, “The genes which make up the life force in you – my children — include the strong genes of my father’s family as well as all of your other relatives.”  As our p.c. doctor mentioned when I first asked about AD and Ken the wise doctor said, “At conception, there are numbers beyond measure from which to draw the genes for a fetus.  I would say that Ken’s chances are possibly yes, and possibly no.”

The wise part from our doctor’s declaration wasn’t said in exact words, but I see it now.  He meant for me and Ken to live our life together to its fullest and deal with the problem if and when it arrives, which we did.  Even as the disease progressed we lived our lives to their fullest.   My wonder – and worry — about worry is, “Can worry cause more worry – and that worry become a problem – creating an illness through worry — thus triggering AD into a self-fulfilling prophesy?”  How much bombarding of our psyche with negative worries can a psyche endure without succumbing to that worry?  Again, a question without answers.

Statistics tell us that if we live long enough 50% of the population will have Alzheimer’s.  That’s one in every two people.  Presently, there aren’t many options:  testing is the most promising – if you can call it promising – and if you want to know the answer.  If you know, then early treatment is a good thing, and even that’s not without questions.  Perhaps we should all take a deep breath, relax in the moment — and in that moment – those moments – don’t worry, be happy.   Then burst into song with Doris Day as she belts out “Que Sera Sera,” or in other words, “What will be, will be.”

Photo courtesy of  http://www.flickr.com/photos/wheatfields/with/2074121298/

Originally posted 2011-09-17 20:03:10.

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