You Say

     You say you get "it." 

     I've done my research also.  I was the one who first brought up his symptoms which fit the diagnosis, even before the two neuro-docs concurred.  I've worked with old folks who had dementia-- a whole variety of dementias-- for many years.  Things got different when Dad caught it.  Suddenly, I was the crazed family member who could not keep Dad at home.  I was the one that the younger staff members looked upon with suspicion wondering if-- or when-- I will come down with it also.

     I know-- from my own brain damage-- that after the brain gets loosened up, the brain goes into survival mode.  Part of that change
is a self-centered centering at a time when all of the middles are 
rapidly exploding into lesions of scarification.  Dad's utter and total
self-centeredness is not something he would have chosen for himself.  Through the passage of time, my own survival mechanisms have allowed me a bit less self-centeredness.  Dad, not so much.  His brain is getting bombarded with lesions and there is scarsely time to breathe in-between new formations. 

     You say you get "it."  You say you understand his dementia.

     Dad is not a case.  He is not the L.B.D. in room three.  He is the man with a failing brain that I love with a fierceness even through all of his atypical neurology messing around in his head.  My heart breaks every day.  My heart breaks next door.  Yours breaks from a distance. 

     This dementia has made us strange to each other.  We cling to our separate life rafts in our separate spheres, each of us with our own twisted and bleeding wounds.  I thought perhaps that our two rafts could connect.  We could traverse the rugged seas in tandem, both of us supporting the other as we also support ourselves and Dad.  The winds whip up in fury screaming, "Not to be.  Not to be."  Instead, I've found a cousin and an aunt [who is not Dad's sister but my mother's sister] and my life partner and a doctor who each bring their own brands of wisdom to my life raft and who help me to support Dad.

     But this is not wholly about any of us.  We are the bystanders.  Dad is the one who is fantastically and utterly consumed.  We are losing one person.  He is losing everyone.  He has already lost so much. 

     You say you get "it."  You say you understand his dementia.  Can you please explain it to me?

~ sapphoq on life ~

The Other Day

     I went to see Dad.  It was on Sunday that I went, in the morning.  I found Dad snoozing in an easy chair near the television.  He woke up and decided that we could sit on a couch to visit.  He almost fell getting there.  "Careful!" a few of the old folks who were sitting in easy chairs near the television said to him as they watched him lurch across the room.

     Dad sat down.  He held his head.  It is always the left side.  He was having another dementia headache.  "Yes, get me something ," he said when after several attempts he recognized what I was asking him.  One of the old ladies turned to two others, "He is getting worse since he been here."  The other two nodded.  "Yes, he is."  Dad was too focused on his headache to pay attention to what they were saying.  To their credit, they kept their voices low.  Even if they hadn't, I would not have "corrected" them.  I was a guest.  And I had no right to "correct" an older adult who were merely stating a true observation.

     The staff doing meds that day gave Dad a non-aspirin over the counter pain reliever and some orange juice.  He thanked her.  "I love orange juice," he said.  After a few minutes the headache was lessening somewhat.  Dad closed his eyes and rested.  I noticed that his hair was greasy.  I knew that his self-care skills were declining.  Damn, I thought.  He may live long enough to have to go into a nursing home.  These days, Dad was looking more and more that way to me.  I made a mental note to have him evaluated sooner rather than later.  "You might as well leave," Dad said.  I understood.  "I'll see you Friday, Dad.  I love you," I leaned over and gave him a soft kiss.  "I love you too," he replied.  I waved goodbye to the old ladies in recliners watching television and made my exit.  


sapphoq on life

Traces of Glucose in the Family Tree

My dad's mother came to live with an aunt after his father died.  I remember her as being a woman of few words with a bun sitting in her bedroom quietly.  My dad had gone to pick her up.  I wanted to go to but I wasn't allowed.  My aunt introduced us and left the room.  Grandmother wanted a kiss but I pulled away.  I wasn't ready yet.  A few weeks later, we returned for a visit.  That was when I did allow physical contact and I sat with her quietly for a few minutes.  I was in second grade.  I also didn't talk much.  I regret that I don't have any other memories of her.

Grandmother had diabetes, type I.  It used to be called "childhood diabetes" and she had in fact had it since her childhood in Germany.  She died of complications.  I don't remember that.

Years later, my dying cousin filled me in on more of my paternal grandmother's story.  Fluent in at least six languages, she had left Germany after graduating high school.  She migrated to Brazil where she worked as a governess for a physician's family.  When they moved to the United States, she moved with them.

My dad told me that she had met his father in the new country.  He was a recent immigrant from Italy.  They began a courtship.  My grandfather wanted to have sex with her, using a metaphor about eating an unripe banana.  My grandmother threatened to throw herself in front of a train if he were to "pluck the unripe banana from the tree."  They got married instead.

The kids came one by one.  During the Depression they went to live on a truck farm.  Times were different then.  When they returned to their home city, they had chickens in the backyard, several large gardens, a few cats, and a dog.  My grandfather was a gardener.  There was one bush outside of the house that he had cut to resemble a wave, Dad has said.  My grandmother sold the eggs from the chickens and took care of her children.  Money was tight even after the Depression.  Grandmother wanted a houseplant.  That wasn't in the family budget.  So she propagated a sweet potato vine which had a place of honor on the mantel piece for all the years of my dad's growing up.  My dad remembers her making pot roast.  He also remembers when he tried smoking cigarettes for the first time and he accidentally set the front porch on fire.  "Maaaaa!" he yelled for her as the flames licked the side of the porch.  [The fire was extinguished].

In her later year, an aunt-- mother to the dying cousin who had died by that time-- was diagnosed with type II diabetes.  She was a heavy-set woman.  During her last year of life, she suffered through amputation of both of her legs.

My mother was diagnosed with type II also, even though she was not overweight.  She succeeded through dietary changes to reverse the disease.  She is the only woman with type II that I know who had.

Dad's latest wife had restricted his carbohydrate intake to no avail. His dementia did not go away and he continued to walk to the corner store to sneak carbs on a regular basis.  He had always liked peanut butter cups, ice cream, and pastries.  I got Dad testing when he came up here.  After finding out that he certainly did not have diabetes, his first requested stop was to a local store.  "I'm not diabetic," he proclaimed loudly.  "I can have a chocolate bar."  He did.  Dad still has a sweet tooth.  Even so, he does not indulge it nearly as much as I have indulged my own fondness for sugar.

I had always labeled diabetes as a niggling concern in my anxious brain.  I didn't want it.  But I also didn't make any lifestyle changes to avoid or delay the onset of diabetes in my own life.  No, I made one dietary change.  I stopped using creamers and sugar in my coffee.  I drink coffee black and I have now for over five years.

I had a medical appointment recently.  After a routine urine test, the doctor came back into the examination room.  He frowned at the paper he held in his hand.  "Your urine came back with traces of glucose," he said.  "I want to send you for more bloods."  I took the paper and left.
 
The next morning found me [starving] at the blood drawing station.  Four tubes and one bruise later, I left.  The entire next week found me exclaiming at anyone who would listen, "I lost all of this weight and I might have diabetes anyway!"  I was angry.
 
Never mind that I had abused my physical body for many years via the ingestion of large quantities of sugary snacks, not eating breakfast or lunch consistently, several experiences with yo-yo dieting, and little attention to nutrition.  Even my aborted experience in TOPS and a "successful" maintenance of a 65 pound weight loss for more than a year in TOPS did not result in consistent healthy eating habits.  I would skip breakfast almost daily.  Some days I skipped lunch in favor of ice cream or chocolate or both.  I cut back on my eating for two days before every weigh-in.  That was how I managed my temporary success.  In spite of the weight loss, I continued with some eating-disordered behavior.  I wasn't starving myself or throwing up.  I was justifying my continued love affair with sugars and fats because well, hey, I was no longer obese.  There were some other folks in TOPS skipping meals and playing loose with their eating habits.  They were honest about what they were doing.  I was not.  Since leaving TOPS about a year ago, I gained back 24 pounds of the 65 pounds that I had lost.
 
I made a decision.  The night after my bloods were drawn, I decided to begin to follow a healthy eating plan regardless of whether or not I had diabetes.  And I did.  I have eaten breakfast every day since that night.  I have eaten lunch every day since that night.  I have eaten fruits and vegetables every day since that night.  I have concentrated on healthy snacks instead of garbage snacks. 
 
I went back to the doctor the following week.  I had lost two pounds.  "Your bloods came out normal," he said.  I told him that I had been talking with acquaintances who have diabetes type II and I have found no one that follows their prescribed food plans.  "That's why we have so many bad diabetics here," he told me.  "By 2050, one of every three Americans will have diabetes II."
 
It is now a week later.  I am still following a healthy eating plan.  I think I could get used to this.
 
sapphoq
 
cross-posted in shortened form to several other places