Friday, July 22, 2011

Overwhelming Majority of the Public Want to Know If They Have Alzheimer's

Overwhelming Majority of the Public Want to Know If They Have Alzheimer's

Be sure and click on the above link and read the article claiming people want to know if they have Alzheimer's. Then come back here and comment whether you agree.

My husband is angry now that he knows. I am wondering if I did the right thing urging him to seek help for his confusion, agitation, and rage, which was more of a problem than memory loss. I didn't care if he couldn't remember doodley-squat, as long as he didn't yell at me about it.

Another thing: articles are showing up claiming Alzheimer's is a lifestyle disease in more than half the cases:

"More than half of all Alzheimer's disease cases could be prevented through lifestyle changes and managing certain chronic medical conditions, says San Francisco VA Medical Center psychiatrist Deborah Barnes, who analyzed global data involving hundreds of thousands of participants.

The biggest "modifiable risk factors" for the disease are physical inactivity, depression, smoking, midlife hypertension, midlife obesity, low education and diabetes, which account for 51 percent of Alzheimer's cases worldwide and 54 percent in the U.S.

"What's exciting is that this suggests that some very simple lifestyle changes, such as increasing physical activity and quitting smoking, could have a tremendous impact on preventing Alzheimer's and other dementias," Dr. Barnes says.

Well, phooey on that. My husband has the APOE4 gene, one of the markers that spell big trouble ahead. My head is spinning with concerns about Alzheimer's becoming another shame-producer, when people are beginning to speak out about it. I'll bet this Dr. Barnes is a skinny blond runner who skis.

Thursday, July 21, 2011

Learning to be okay with that -- whatever it is

Yesterday I was sitting in the car, waiting for him to come out of the supermarket, thinking about how one of the hardest things about living with Alzheimer’s is that you cannot call them out on behavior that you normally would. You cannot really hold them accountable when they embarrass you and make fools of themselves. Since he fell and hurt his shoulder, he has decided to let his arm hang as if it were not attached because that gets him attention, and he is talking about this thing to any stranger who will listen. And I just have to be okay with that.

Now, this morning I am sitting at my laptop, watching a baby hummingbird sipping from a feeder right outside my window, thinking about how the medications must be doing him some good. Last summer he could not have formulated a plan in his mind for keeping cold water on hand. However, last night he placed a new case of bottled water on the floor near the refrigerator and said, "I’m putting in six bottles on the top shelf. When you take one out, put one in on the bottom shelf."

I was stunned.

"That’ll work," I said, thinking, by golly that will work.

And now it’s later, and he has asked me a question that left me just as stunned as his plan for the water. Only in the other direction. He asked if he was driving me to the hospital when I have knee replacement surgery next month. He got really upset when I said yes.

"Would you rather I stay in a hotel and take a cab to the hospital?"

"Well, don’t you need a car left there?"

"How long do you think it will be before I can drive?"

"How long will I have to be here by myself?"

The multiverse is imploding.

"It will be between two and four weeks. I’m going somewhere for rehab."

"And I have to stay here and look after the dogs?"

"Yes, and you can bring them to visit me when you pick up my jammies and bring me clean ones?"

"I have to wash your clothes?"

"You can do it. I know you can, just like I'll do for you if your shoulder needs to be operated on."

I could hear him grumbling for several minutes.

Truth be told I am having this surgery now while he can still take care of himself and the animals. I'd say it is just in the knick of time.

And I have to be okay with that, like Paul, in Phil. 4:11, "content under any circumstances."

Paul had to learn this. It was hard for him. I can relate.

Sunday, July 17, 2011


Yesterday the truth came out. Last night we watched TV together and never mentioned it. (See yesterday's post.) The following may shed some light on why he really did not know he had Alzheimer's.

When I first suspected AD, I hoped his problems with getting lost and not understanding written or spoken instructions was due to the stress he was under as a truck driver. He retired a couple of months before his 65th birthday, but to him that just made matters worse.

Suddenly, everything was my fault. If I would just leave him alone, he would be fine. It was impossible for me to know if he was in denial that anything was wrong, or if he had become anosognosic, a term I had come across in my internet research, meaning “being unaware of illness or deficit.” Credit goes to Joseph Francois Babinski, a French neurologist, who coined the term in 1914.

Anosognosia differs from denial. Denial is a strategy used to reject something that a person wants to ignore or avoid because it is too difficult to face. Anosognosia, on the other hand, is being unaware of a decline in cognitive skills or even the ability to move. When severe, the person is unaware of himself to the point he stops bathing and changing clothes. This lasted only a few days with Bill.

With some difficulty, I convinced him to see a doctor, who recommended Aricept, which he refused to take, and an evaluation by a neurologist. which included an MRI, blood tests and a spinal tap. Wonky genes showed up in his blood and spinal fluids. My fears were confirmed. It was early Alzheimer’s.

Today he is taking Aricept, Namenda and Seroquel. He seems to go in and out of anosognosia. One day he blames the medications for how badly he feels physically, and says he is only taking them because I won’t let him live in our house if he doesn’t. The next day he might jokingly say he has Alzheimer’s and that is why he is taking the medications. In any case, he minimizes his problems.

His degree of anosognosia seems to vary from day to day and situation to situation. It is difficult to pinpoint when he is anosognosic or just acting out peculiarities. He seems genuinely unaware that he is not always processing written or spoken words, yet he can articulate his opinions clearly, which he does regularly and loudly, sometimes inappropriately to strangers. But for the most part, those opinions are right on target with what the rest of us are thinking, but do not express because our filters are still in place.

He stopped listening to books on tape because he says he cannot follow the plot, but he still enjoys TV programs that are taped and display closed captioning. He can rewind as needed.

Unlike some Alzheimer’s patients who ask the same question repeatedly, he states the same opinion over and over, unaware that he just said that for the hundredth time. He seems unaware of verbalizing almost constantly, chattering to the dog, singing, recalling long ago events, which he tells very well. His short-term memory is partially intact. He cannot remember appointments, but neither can I.
He considers it perfectly normal to be unable to tolerate a cup being removed from the counter, or to open a cabinet and find new, unfamiliar products. Everything must remain where he placed it, or he gets annoyed, even angry. New things seem to frighten him. His world is shrinking to what he can hang on to from the past. He clearly is unaware of this.

His taste in food has reverted to what he ate as a child. Only certain food combinations are tolerated, such as new potatoes with green beans. He will not eat green beans without the potatoes. And he specifically requests certain foods, which he never did before. He would eat what was served and enjoy it.

I’m sure there must be some battery of tests that could determine to what degree he is anosognosic, but I am just as sure he would never submit to them, nor would I want him to. The diagnostic process has been a nightmare for him, so much so that when I asked him to describe it he refused, loudly, emphasizing how sick he is of being sick.

There have been good days since his diagnosis, just not lately. Now I welcome peaceful moments, when we can both forget for a little while, and let things be as we thought they’d be when he retired.

Saturday, July 16, 2011

One thing leads to another...

"Circumstances are subject to change, at any minute, without notice." So said my father so often that we all thought he made it up. When I Google the phrase, all I get are terms and conditions for travel arrangements, so maybe he did make it up. But I hate it when it happens.

Today has been a doozy. The good news is that he loves the little dog and the cat that I brought home from the animal shelter; plus the orthopedist visit proved hopeful. The rotator cuff does not seem damaged beyond repair. (See the previous two posts) A high- powered steroid cocktail injection will tell the tale within the next three weeks. If the pain gets worse, an MRI will determine whether surgery is needed. The bad news is how he’s been acting. I’ve earned the t-shirt – the Brunt.

Is it "roid rage"? Who knows!

Pain? No doubt.

Oxycodone? Probably!

Am I sick of it? You bet.

But here’s the big change: he read the package inserts on Aricept and Namenda.


"These are for people who have Alzheimer’s," he said.

Like spiders, heat crawled up my neck as I realized he does not know.

"Do I have to take it even though I don’t have it?" he asked.

"The doctor said you have it."

"No, he did not! He said I have the gene and I might get it."

"Ninety-eight percent…the other two percent can’t be proven until autopsy."

There it is.

"So I’ve got Alzheimer’s."

I shook my head.

The next few moments were rough to watch and had to be worse for him, as he went straight for the worst-case scenario.

"No! No!" I argued back. "You could have years and years...good years"

"But it’s gonna get me."

"Well... eventually...but they might find a cure within the next two years!"

"Ain’t that some s...! What a way to have to live..."

"Believe me when I tell you I would feel the same way."

He walked out of the room and when he returned the pain in his face brought tears.

"You have to know how I have grieved about this, and made deals with God..."

He looked at me with knowing.

"...and I have vowed I will be here for you no matter what. That’s why you have got to stop trying to run me off!"

The look on his face convinced me I need say no more.

We spoke of how sick he’s felt since he fell, and how every day he feels sick is a day we can’t get back.

I wonder how long he could have gone without knowing if the bees hadn’t attacked him and caused the fall that injured his shoulder.

I could have sworn he knew. He's even joked about it. Oh, God, he really did not know until today.

Do we cry together?


What now?

Wednesday, July 13, 2011

It's a torn rotator cuff

The grueling wait in the ER ended with a diagnosis of torn rotator cuff and a referral to an orthopedist. The appointment is tomorrow. (See July 9th post)

Meanwhile, Bill is in a lot of pain and is letting the whole world know about it. He complains non-stop about how he was adjusting to "those meds that’ll help you remember when you’re 80 what you did yesterday." He's talking about Namenda, Aricept, and Seroquel.

Now since the fall he rails against his poor quality of life: "If this is how things are going to be, I might as well just lay down somewhere and let them experiment on me ‘til I die." And he usually ends it with, "I can see why people don’t want to go on, don’t you?"

Of course, I can’t answer that. I turn away so he won’t see the tears. I hate to mention my son in every one of these blogs, but damn it, his suicide is so much with me, every single day; more so with Bill cleaning his pistols and taking up target practice in the back yard.(Don’t tell me to take his guns away. I might as well go after his car keys.)

A biblical principle is: to feel better yourself, do something for someone else. So this morning I went to the animal shelter and adopted a gorgeous silver tabby cat and a min-chi, Miniature Pinscher and Chihuahua mix, who looks for all the world like a tiny Doberman.

The cat is meant to stay outdoors, taking care of mice in Bill’s building, and the min-chi is to keep him company when he is watching NASCAR, when I’m somewhere else. The other two dogs are no company to him. Lily is mine and stays within sight of me at all times. Her job is to guard my safety at all costs. The other dog, Sally, is just a big ol’ goofy dumb 60-pound lapdog, if anyone had a big enough lap. Sally followed Bill home from the dump and never left.

Since Bill fell, he has become more and more self-centered. Pain will do that. And I hope this little guy will take his mind off himself.

Saturday, July 9, 2011

Since the fall...

As he was getting up off the driveway where he fell when the bees attacked him, he said, "This just cost me two weeks of my life."

He was not wrong. (See the blog of July 1. )We are going into the second week and he has been too sore and worn out to do anything more than water his garden and feed Sally, who we consider to be his dog.

His shoulder may be seriously injured. He won’t get it x-rayed voluntarily, and I haven’t wanted to force a trip to the ER since it has been getting some better day by day. However, a new thing: yesterday he drove with his left arm and his hand started tingling, then went numb. I’m concerned about nerve damage, so now it is time to insist on seeing a doctor.

The worst part though is now he is beginning to lose help that he will ever be better. Without hope his life will seem like an endless stream of doctor appointments and won’t seem like living. He is sensing the passing of time, and he spoke aloud yesterday of giving up:

"If this is the way things are going to be I don’t want to go on. Tony had the right idea."

I wish he wouldn’t say that. Tony is my son who believed he was terminally ill, and ended his life with a shotgun. I don’t need to be reminded; neither do I need to worry about losing another one to suicide. When he talks like that I retreat deep inside myself and start repeating "The Lord’s Prayer." Only I rarely get through it even once before I feel better and reassured —for a time.

Friday, July 1, 2011

Is he sensing the coming of the darkness

What was it he said today? When you're young and vital, you can go toward the dark and stay gone until just before the light dawns and still make it back in time. But when you're older you can't do that. You don't have the strength to pull away from the dark. Yes, that was it.

I watched him closely for signs of seizure or stroke, as he sat still, in his chair, careful not to bloody the fabric with his bandaged, bleeding elbow. A nest of angry bees had swarmed him out in the driveway as he unrolled some old carpet to check its condition. I had stepped out the front door just in time to see him running backward, tripping, and slamming his shoulder full weight onto the driveway, being covered with bees. His face and lips swelling until I barely knew him, he talked on about the past. But first he reminded me how he'd tried to protect me from the bees. It all happened so fast. All I could see was him sprawled on the ground but before he could shout, "Run!" a bee stung me on the lip.I took off back in the house to grab a box of baking soda to make a paste, and after doctoring us both which included Benedryl and Ativan, and all the excitement started settling down, he reluctantly agreed to sit in his chair and try to relax.

The back story on the ensuing conversation is that God told me right off the git'go that I would be instrumental in bringing peace between him and his family, even if that meant he went back home to them. (That was a big ol' Thy Will Be Done, I can tell you.) I remembered yesterday, when he confessed the reason he wanted to help me around the house was because he never did that before. He was married for 36 years and he never helped around the house? This is disturbing even now, but nothing new.

Neither is his rage.

A year ago, when I let the primary doctor know about the rage, he put him on Seroquel, ostensibly to help him sleep. It helped, but being expensive, every refill caused a new battle. But now the neurologist added Namenda and Aricept to the mix, one at a time, over a period of two months. It seems to be helping.

The neurologist told him it would "help his thinking". So now my beautiful husband with the bee stung lips, bloody elbow and wracked up shoulder is asking quietly, "What else was that Seroquel supposed to do besides help me sleep?"

Rage, I said.

His head nodded knowingly, as he mused that if he wanted to have any kind of life at all, he'd have to stay on Seroquel the rest of his life. "I was born with that rage in me. When I was five or six I had a little wagon, and the handle pinched my thumb and made a blood blister. I beat that wagon until it was torn completely up. Mr. McAllister said it was good to have fire and spirit, but if you couldn't control it, then it was not good at all. I should have been on this stuff all my life," he said.

I felt like saying Who Are You and What Have You Done With My Husband? This is how untypical instrospection is for this man.

Who's Out There? (c) Lin Cochran

This could be the start of something big.

Thy will be done.

The night the moon was closer to the earth than it will be ever in our lifetime, a cloud passed in front of the moon, forming a perfect face looking back at us.

Coach Broyle's Playbook for Alzheimer's Caregivers

This book comes highly recommended for caregivers. It is downloadable onto Amazon's Free Kindle App for PC's, which keeps it away from the curious at our house. He does not use the computer and we don't use the A word or the C word. I'm his wife, not his caregiver. Lately I've become his friend. He is talking now about way back in the day. I stand as his witness. This man knows exactly what is happening to him. I am attempting to accurately record his shifting perceptions.

To Believe in God

To Believe

To believe in God is to celebrate
the gift of life in the presence of death.
It is easy to celebrate life on the good days
when the sun is shining and laughter floats
through the air and children play and lovers love.
But life is more than sunshine.
There is also dusk and the starless night
when laughter dies and fear clings to the soul . . .
fear of losing someone dear.

That's when celebration becomes an act of faith.
Not a soft faith full of heavenly promises,
or a bromide faith which dulls the sharp throb of grief,
but an open faith . . . open to the dawn and to the dark.
A faith that reaches up to claim life's highest joys
and kneels down to taste the bitter wine of failure
and disappointment and sadness.
A faith that seeks every mood and in that exposure
grows more sensitive
feels more pain
knows more joy.

To believe in God is to celebrate life.
Not a piece of life but all of it . . .
the good and the bad, the happy and the sad.
Because God gave it all
and we live when we receive it all
and love it and use it and live it.

To believe in God is not to deny
the presence of ugliness
but to transform it into beauty;
not to deny the sounds of discord
but to blend them into harmony;
not to deny the confusion of chaos
but to create order.

To believe in God is to take anger
and make it into a sensitizing of the soul;
to take hatred
and transform it into a ministry of love.
To believe in God is to take the broken pieces of life
and fashion them into a cross.

Author Unknown