Diagnosis

The trip to the VA this morning was informative.  We met with two doctors and they reviewed the tests done in the spring.  They then performed some new cognitive tests and motor skills tests.  The findings are that Terry has Lewy body disease.  I learned today that it is OK for him to sit and watch his game shows, that is what makes him happy.  He has difficulty handling much more than that so leave him to it.  This will be  long stuggle and we will have to be patient.  Patience is not a virtue I have but I shall try.  I also learned that it is OK for me to live my life, I will carry on and do for him what I can but I will live MY life. 

Symptoms of Lewy body disease

People with Lewy body disease have cognitive problems (problems with thinking, memory, language, etc.) similar to those that occur in Alzheimer's disease. Therefore, it can be hard to distinguish the two. Some doctors think there are three distinguishing features and the presence of two of them makes the diagnosis of Lewy body disease probable:

• Motor problems typical of Parkinson's disease but usually not so severe as to warrant a diagnosis of Parkinson's. Of these problems, an impairment in walking (a shuffling gait) might be the most common one. Also common would be muscle stiffness and a tendency to fall. Tremor would be less common.
• Fluctuations in cognitive function with varying levels of alertness and attention. Periods of being alert and coherent alternate with periods of being confused and unresponsive to questions.
• Visual hallucinations, usually occurring early on. Delusions may be common too.

It's possible that people with Lewy body disease are better able to form new memories than those with Alzheimer's disease. Compared with Alzheimer's, Lewy body disease may affect speed of thinking, attention and concentration, and visual-spatial abilities more severely than memory and language. Depression may be a typical symptom too.

Treatment

Right now, doctors prescribe drugs to treat four major features found in Lewy body disease (also see the medication section of our Information page):

• Cognitive problems. Usually, a drug like Aricept is prescribed. This is the same drug that is commonly prescribed for Alzheimer's disease. In some people, it seems to slow the progression of the disease.
• Motor problems. Levodopa/carbidopa (Sinemet) is frequently prescribed to deal with the motor problems. This medication can worsen hallucinations, though.
• Hallucinations. An antipsychotic medication, such as Zyprexa, might be prescribed. This kind of medication can worsen motor problems, though. Also note the FDA warning.

July 31, 2014

Tomorrow morning I take Terry to VA to have a meeting with the Nuerologist to finally find out what the tests done in May will show.  It is hard to think that they will have much to say that I don't already know, the tests were taken so long ago that I don't think they will be able to tell us much.
I have seen more changes in Terry in the months since the tests were taken.  His moods are more erratic than ever.  Other people have begun to notice now.  Some times I hear him talk to people and I have to wonder "Who is this man?  When did that happen?  Are you kidding me?"
A couple of months ago he called and talked to a cousin that he had not talked to in about six years.  Shortly after that call the cousin called me to ask if Terry was OK.  He was very concerned about things that Terry talked about, the memories were just not right.
We lost Betty Jo, his father's long time girl friend, and that has been a devastating blow to all of us.  None of the family wanted Dad to be alone so I graciously offered for Terry to go north to help Dad so he would not be alone.  I found that I was happy to be alone, sad to say but true.  It was a relief to have time alone in the house, to answer the phone and not have to answer who it was.  To be able to go outside with out having to explain why.  It is hard to explain but it was nice not to be judged or questioned about my activities.  The dog was even starting to like me!  I even had her potty trained while he was gone.
It turns out that he was not enough help to his Dad, his younger sister told me Terry was not capable of  taking care of him.  She brought Dad to her house in Pinckney and so now Terry is home again.  Back to  the couch.  He has started going for walks a lot.  He wears a pedometer and tries to walk 10,000 steps or more a day.  He has a membership to the gym that we pay for each month but he won't go.
My sister is convinced that he is depressed and needs anti depressants but I don't really think that is the case at all.  I will try to ask the doctor tomorrow.
Recently he went out to buy some D batteries that he wanted.  He came back with something else but no batteries.  He went back out, again came home with  no batteries, repeat.  Finally, trip four he came home with the D batteries.
When talking with his brother in law that rode up north with him I found out that he got lost going to his Dad's house.  This is very sad because it is a very uncomplicated drive that we have made several times a year for over thirty years.  When ever we go anywhere together I do the driving, first I don't like his driving, second because I don't like his driving!  We went to Grand Rapids for my Aunt and Uncles anniversary in June, I drove, he slept the entire drive, both ways!  I drove around Grand Rapids looking at homes that had been owned by family members and he was just terribly confused but did not ask why we were driving around.  I am quite sure he had no idea that the house I was taking pictures of was the home of my grand parents, he was there many many times in the past but was blank when I pointed it out.
Any way tomorrow will tell...........I hope.

tough day

Tough day today.  As Terry seems to become more used to his memory issues and his other issues he seems comfortable with doing only what needs to be done.  He seems content to sit and watch TV while I am busy with things that need to be done.  His attitude is digressing, he snapped at the kids all night on Saturday night when they were here and today we had all four kids for a couple of hours and he complained about everything from the light being on to the kids making noise to touching his apple and just about anything else they did.  He was not too happy with me not reacting the same way.  At one point our 13 yer old grandson saw me squeezing a stress ball as he said something.  Devin and I had a great laugh at that.
Terry shows less and less interest in things, he never did have a hobby but now he seems to have no interest what so ever.  He has no tolerance for anything different than his daily routine.  Baseball season has started so now he has to watch every game.  He doesn't know who is playing most of the time but still he watches.
This is going to be a long journey.............

Good news - no news

We spent the day at the VA hospital in Ann Arbor the other day, a long long day.  (I really feel bad for the people that drive long ways to get there and then have to drive back after hours and hours in that place).
We met with hubby's doctor and the only thing we really learned is that he does NOT have Parkinsons, such a major relief after watching the way my Mom and all of us suffered from that.  One of my long time friends has had to put her husband in a nursing home because of it.  No one wants to have to do that!
He also does NOT have a brain tumor or AZ.
Now we have to wait until the end of May to see the Neurologist to find out just what the heck is going on with the dementia.
One thing I did find out that I am very upset about is that for years he has told them that he drank 12-24 beers a day for over twenty years!!!!!!!!!  They have him classified as an alcoholic.  He NEVER drank that much, we never had that kind of money and I would have left years ago had that been true.  I think when he first told them that it was his macho man stupidity that was speaking.  For some reason men like to stretch certain truths to look manly, I think it is absurd!
Anyway, I am now annoyed with him because this is going to cost us money in co-pays.
Now he has to see a hand surgeon about the shaking and a trigger finger.
And he has to go to the kidney doctor and the eye clinic.  VA just keeps you coming and going.

new care

Well, here we go for another round.  Mom is gone,  Dad is gone - now I watch my husband's fight with diabetes take away the man that I married over forty years ago, the father of my two adult children.
His struggle with diabetes has been a long one, largely ignored by him for many years.  One year, in fact, he adamantly refused to take any drugs and lied to his doctor, ate anything he felt like eating and drank as much pop as he liked.  During that year he passed out at work a few times, was irritable with everyone around him and argumentative about his decision not to control his diabetes.
That was more than ten years ago but the damage was done.  At only 64 years of age he has been diagnosed with dementia.  I have seen this coming for some time and although not at all happy with the diagnosis I found it to be a validation of what I thought.  He has been tested by nuerologists and tomorrow will have a test to see if he has a tumor.  The tests are to determine what type of dementia he has, so far it is classified as vascular.  This is the second most common type of dementia and the hardest to medicate or control.  If the tests determine it to be alzhiemers (which I doubt) he can take some of the drugs that my Mom was able to take, I pray that he does not have the Parkinsons disease that my mother suffered from, we shall see.
Never one to have any hobbies or interests in things around him he now sits in front of the tv for about fifteen hours a day.  His main purpose in life seems to be taking care of me, which is fine but not really neccessary.  I never set an alarm clock, he makes sure that he knows what time I have to get up each day - sometimes checking with me several times a day.  My coffee is always on the table next to my spot on the couch.  My car is always warmed up on cold winter mornings.  The dishes are washed each day - the sink is not scrubbed nor the counters wiped but there are no dishes in the sink.
I truly wish there was more in his life, that he would/could take true pleasure in things around him.  We recently adopted a nine year old Bishon Fries that absolutely adores him.  She has been a God send and I am very glad she is here, I forget who rescued who when I see the two of them play together.  She doesn't get her feelings hurt when his mood swings turn mean.
Today we had our two grandsons whom he loves very much and our great nephew and he was so crabby I could barely stand it.  He can not handle the noise that three young boys make.  The change in his routine (watching tv in a quiet house) can be very upsetting to him.
As much as I do understand he does not help the chaos when the boys are here and he makes me angry, some days I just wish he had some place to go or some thing to do out side the house.  Most of the time I just try to cherish him and the time we still have.

I just located this in my email.  It was written by and read by my daughter at my Mom's memorial service.  Before my daughter read this my grand daughter read the poem "The Dash".

It's almost impossible to sum up the dash of Grannys life with in a few words or even to choose the right ones. Small but mighty would be the best way to describe her demeaner although she was also so much more then that. Ruthellen Crawford was a force to be reckoned with when her mind was set on a task. Our poor grandpa found himself sitting with a lap full of his dinner when trying to reason with her one occaison that I can think of...the situation at hand is long forgotten but not her firce way of telling him to stop his actions. She was a passionate woman about a wide varity of subjects from nature to history to her family to her love of all things natural. Granny was the first peerson I can remember discussing recycling & truly wanting to change the world, along with anyone would listen to her out look on all things she found injustice in. She was one to follow the rules & often times forcefully demand the same in other. sometimes that would require a fork to the elbow if you didn't listen the first 3 times you were told to remove them from the table or by going to the media if her thought that was the course of action to take. When she felt the rules so to say,weren't correct, she would loudly fight against them & anyone that stood in her way. When things were out of her reach,which they often were since she only stood 5 foot 1(and I'll thrown her 1/2 foot that she always claimed was there) She would find a way to move that mountain that stood between her & her desired outcome! When it came to parenting, she wasn't beyond tying a child to a tree, name with being with held of course, or letting the one sleep in the cowboy boots when the fight just wasn't in her to correct his behavior. (which I will add he still wears today) Ruthellen was the type of mother who made clown halloween customs for all 4 children by hand which also doubled as pj's for the cold winter months when things were tight on the budget, all the while wearing a smile on her pretty face that covered the hardships with in the home. Image was important to her & those that didn't follow would knew of her displeasure but always in a motherly/teachers way. She regarded her daughters as her best friends & helpers through the tougher of times in life, teaching each woman in the family a strenght & courage that only a loving mother can, even up til the end. As a grandmother, we couldn't have asked of more...from the circus to outings at Mayberry & the thanksgiving parade that her & grandpa always made a priority. Her life truly revolved around her passions of the family, mother earth & teaching the world to be a better place. I will personally miss her advice, her smile & that laughter of hers that would carry through out Crawfords Restuarant on a daily basis. Our Beloved Granny truly knew that Life & all it's beauty was worth living to the fullest, for this I am truly grateful to her! Happy Trails my beloved granny...til we can met again

After one year

On October 23 it had been a year since Mom's passing.  It is hard to comprehend that an entire year has gone by.  Much has changed and yet so much is the same.
The Sunday that she passed was the last Flag Football game of grandson Dylan.  This year at the last flag football game I was emotional out of the blue.  I had planned to be busy on the 23rd to avoid thoughts of her death but I was ambushed by sadness at the football field.  It was gratifying to have my children and grandchildren around me on that day.  I know Mom would have been proud of all of us.
My sister recently went to medium and heard from Mom.  She and Dad are together, she wanted to know what happened to the Crown Royal bag of coins.  We had divided them into equal portions for all of Mom's children and grandchildren.  The medium said that she was pleased to know that we had them.  The strange part of that is that these coins were silver dollars, half dollars and $2 bills that my Dad had saved from the cash register at our restaurant.  Mom had fussed for months, if not years, over what to do with the coins.  She would sort them over and over again and they would fall to the floor making a clatter all the time.  I eventually removed them from her room because we got tired of hearing them hit the floor and picking them out of food and stuff.  they were indeed in a Crown Royal bag.  She never seemed to miss them once I took them from her room. Apparently she didn't really stop worrying about them.
I need to find out more from my sister about what the medium said.  This woman has been very tuned in to each of us that has gone to her.