The Autumn of Our Lives

 

 

Bill and I always had this kind of side plan when we reached the Autumn of our lives, we would migrate south and become snowbirds.  But sometimes life throws us a game changer, our wings have been clipped - in our case the game changer is called Lewy Body Dementia (LBD).  For the past couple of years we have been tracking its' path, trying to find out what was going on, the diagnosis is challenging and often confused with Parkinson's and Alzheimer's early-on. LBD affects an estimated 1.3 million people in the United States.  The easiest way to look at it is to picture an umbrella which represents Parkinson's.  At each point hanging down from the umbrella is a variation of these diseases.  One could be Alzheimer's, another Parkinson's, Lewy Body  Dementia, Parkinson's with dementia, the list seems endless.

 

The main symptoms: Dementia, movement problems (parkinsonism) fluctuating cognition, attention, alertness, visual hallucinations, REM sleep behavior disorder, extreme sensitivity to antipsychotic medications, personality changes (depression, delusions, apathy) and changes in autonomic (involuntary) nervous system (blood pressure, bladder and bowel control)

 

We have followed the search the same as many affected by this heart-breaking disease.  First diagnosis: Parkinson's, next diagnosis - Degenerative Dementia with Parkinsonism features, Alzheimer's, and finally what I have come to suspect for quite some time, Lewy Body Dementia with Parkinsonism Features.

One remembers driving skills for a long time since they are learned quite young, however, the problem arises in the unexpected situations that can arise (deer run out in front) and wrong turns, spatial problems (parking) etc.

 

It seems we will try to sail along taking one day at a time, but at the same time we must plan for a very different Autumn of our Life.

Sleepy Guy

This month we visited the neurologist in Springfield for the six month check-up.  Just driving there and back is exhausting for both of us.  It is a very quiet drive because Bill is still driving, but needs the quiet to concentrate, his nerves are already rattled just leaving the house.  So often now if he does go with me for shopping, he prefers to wait in the car and cat-nap.  As hot as it is getting, I hope no one turns me in for elder abuse.  I digress. This visit turned out to be a dud for both of us.  We are always frustrated and confused as we leave and as always this is the case.  This time the doctor asked Bill how his driving was? Bill replied, "Better than ever." The doctor then looks at me. I raise my eyebrows and softly say, "and accompanied by me."  To which Bill then states quite bluntly he has been driving for well over forty years and doesn't need any help from me!  The doctor never looks up from his notes and says, "According to the driver eval, you could be driving with a stranger beside you rather than your wife and that might not be as nice."  We then move on to another sore subject: lawn mowing - grrr.  I make my point, Bill makes his point.  Are we in marriage counseling or the principal's office?  We leave with a note describing our bitch session.  I think perhaps I am the one with the problem, my husband is slipping just a bit everyday and everyone seems to be blind to it.  His personal grooming is going down hill.  His words are becoming mixed up.  His naps are becoming longer.  People in denial still say the same thing, "Could it be the medicine he is taking that makes him so sleepy?" Perhaps, I need a tattoo on each arm one for me that says, "This is not Bill, this is the disease," and one on the other arm for friends and relatives that says, "this is not an effect of medication - this is a symptom of the disease." Why would anyone take medication for a blank expression, stooped shoulders, shuffling walk, extreme tiredness, and agonizingly aching muscles? I could go on, but I am so grateful I still have Bill and he is still able to verbally express things quite well.  In fact, I am seeing a new Bill who observes things he never took interest in

Crappieking 2009

 

Crappieking 2014

 


Bill and his most beautiful kitty

Grandie starting to practice driving boat

Another beautiful day at the lake

 before, like sunsets, clouds, all things in nature have become so beautiful and music makes him feel good. 

One Day at a Time

"One day at a time," that's how we roll these days.  I thought I would give you a bit of an update on the Crappie King.  We went the end of April to Mercy Hospital for his second driver evaluation and he passed:) The only change was he went from driving locally to driving locally with me accompanying him.  Driving is such an important part of independence.  There has been some more cognitive decline just since November.  The memory medicine known as "Exelon" has been doubled to see if this might help to slow it down.  Bill thinks he has Parkinson's.  At first I thought this might be because of the stigma in our society regarding the rainbow of dementias such as Alzheimer's, but now I am beginning to think he is just stuck on the Parkinson's term because that was the official diagnosis in the beginning of this path we are now on.  I find it strange how some very close to Bill don't notice it and how some strangers pick up on it immediately.  Perhaps it is because of our love for Bill that we don't want to accept what is happening or maybe because

Last Labor Day and this Memorial Bill needed help with his beloved Pinata game.

Bill always wanted to pass his love of fishing on, think he has succeeded

Time marches on grandchildren growing up

Nobody moves the  old "Lion King" out of his chair at the fish fry

Bill has captured a stray kitty and the grandies named her "Minnow."

 others have walked this trail before us and easily recognize it, and also because Bill is just like many others in this disease  able to still fake it for short periods of time, so it is hard to believe.  Medically this is referred to as "shining for loved ones," in Bill's case, it's easy to remember he was a "gifted bull-shitter."

One Day At A Time

The Long, Cold Winter

 

Bill's cat warmers, Stinky and Walleye

 

 

 



Hopefully, it is almost over.  Although the Farmer's Almanac suggests we may be in for one more dose.  We've lived at the lake since '82 and this is the second time we have seen the main channel froze.

Throwing rocks at a new beaver dam

 

 





 

Sushi loving cat will go out side long enough to hunt fish

It seemed like Bill and our old cat, Stinky, couldn't get warm enough.  Frequently, they warm each other. Bill is doing well.  He is now the recipient of a handicapped parking placard and a handicapped hunting permit.  Our oldest grandson is working to complete his boating safety course to assist with a favorite hobby - crappie fishing!

 

 

 



 

Even though it was colder than normal, it was a fish-loving cat's delight! Shad from under the ice feed lots of nature.

 





Forget Me Not Wreath



Thinking back, we know now it probably had already started back in 2005.  We had just come back from going to the US Supreme Court to hear an argument regarding the case connected to Bill's parents' murders. http://en.wikipedia.org/wiki/Deck_v._Missouri
Bill began to frequently have violent dreams/nightmares where he thrashed, screamed, kicked and hit. I would mention these episodes to people and they would just laugh - it was hard to picture mellow, easy-going Bill talking like something from the movie, The Exorcist.  Eventually, time passed and as some got stuck sharing a hotel room with him, it became an experience they never wanted to repeat.  I mentioned these night time freak episodes and doctors attributed it to night terrors brought on by the murders and the on-going trials and appeals ie. news article  Another thing that happened at least that far back - Bill could no longer smell things. We never gave that loss of smell a second thought.  People always brought up so and so who couldn't smell any more either and then the subject would change. In 2012, Bill kept going to his General Doctor and they kept running tests and running tests till finally the doctor began to hint: perhaps seek an opinion from a neurologist.
We went on vacation in January 2013 to Cancun and it was unbelievable the amount of time spent running to the bathroom - going and not going (one or two) had become a frustrating issue.  Almost immediately upon return, Bill noticed his hand turned blue - dark blue.  That did it, he called; It was March before we could get him in.  We went to the neurologist, he asked questions, did some small physical tests and pronounced, "You have Parkinson's." He put him on the standard Parkinson's meds.  We went back in three months. I mentioned I felt there was more going on.  The doctor didn't seem to care for my butting in.  I went home, called the National Parkinson's number and got the name of a Movement Disorder Neurologist.  In the mean time I asked Bill's regular MD to order a neuro-psych test. He did that in May, several flags showed up.  In the mean time we waited to get in to the Movement Disorder Clinic in September. It was an all day appointment. We met, a nurse, a speech pathologist, occupational therapist, physical therapist, a counselor and the Movement Disorder Doctor.  Each person evaluated Bill, then they met with the doctor and then he, the nurse and the counselor came back in with their thoughts. He did not quite fit the pattern of a person with Parkinson's, but instead the features, called Parkinsonism. He had also scored very low on cognitive testing and they wanted another cognitive testing to be done.  This was done the end of September and we met back with the doctor in October. His diagnoses: Degenerative Dementia with Parkinsonism features.  He immediately put Bill on a memory medication to help slow down the memory loss.  He also put him on an anxiety medication and an anti-depressant, not to mention all the stuff Bill took over the counter for number two issues.  When able to find my voice again, "I asked Alzheimer's?"  He said, Definitely not, there is Lewy Body, Vascular, and Frontal Lobe and other dementias. The real true way to tell is by testing a piece of the brain.  You don't want to do that do you Bill?"  "No way."  With the way of Google it didn't take long to study up and determine which one he most likely matched up with - Lewy.

Happy Holidays

Green Cabin Circa 1955

Some may think there is very little to do at the lake during the winter months, however, if you like quiet and solitude, it is the greatest place to reflect while sipping a cup of cuppa, and watch birds...







Grandest Grandie - Lauren

Perhaps it's time to plan a hunt with a young grandson, with hope of passing a tradition and memories of a lifetime along...

 



Grandsons: Lucas and Nicholas

 

 

Photo by Jacquie from Memories Lane

Your never to old to enjoy a snow day!