Wednesday, November 2, 2011

Be careful what you wish for

There are ordinary days, then there are no turning back moments.

--Am I losing my mind?

The air froze in the room.

I wouldn't exactly put it that way.

The moment I'd been wishing for -- believing if he could just accept what was happening it would get easier for us both.

I'd say it was more of a brain thing than mind. Your brain is making your mind play tricks on you.

He stood in the doorway, his thinning arms propping himself up. This was a no turning back moment.

As I understand it, based on what they can see in your blood and spinal fluid and your eyes, it's a brain thing.

I watched his face for clues that he was ready to hear more. There were none.

--And that's why I'm taking this medicine, this Namenda and Aricept? I don't think it's doing any good.

He walked away.

There are ordinary days, then there are no turning back moments within ordinary days.

As on any ordinary Tuesday night, I was watching TV. He collapsed on the bed beside me and curled himself into the fetal position. I reached out to touch him like it was any ordinary Tuesday.

--I'm sorry things have turned out the way they have. I didn't mean it to be this way.

I heard myself gasp. I grabbed his thinning arm.

Don't even go there, Baby. Don't even go there.

Now I can't stop crying.

Sunday, October 30, 2011

How Great Thou Art - HD - Barbershop Multitrack - YouTube

How Great Thou Art - HD - Barbershop Multitrack - YouTube:

'via Blog this'

Alzheimer's and Animals

Ever since that day last summer when when his neurologist confirmed to me during a private visit that he indeed had the Alzheimer’s type dementia, I’ve been trying to trust him to decide as much for himself as possible. This means I have released to him as much control of our day to day lives as has seemed feasible. He still gets to hold the remote. But I have learned the hard way he can't be trusted where animals are concerned.

The showdown came a week ago.

Animal cruelty is my line in the sand. This is the hill I am choosing to die on.

Every time he has wanted an animal, I have gone along with him. I knew he was an animal lover before I married him. That’s always been high on my list. It started with Suze the cat. He had her with him when he was driving a truck. Of course, once he brought her to my apartment she never again saw the inside of his truck. My labradoodle Lily learned to tolerate her.

Suze stayed with me and Lily until he retired. He got tired of her and I reluctantly allowed her to go live at his son’s house. After all, she was his cat. He left Suze with them, and brought home Rusty, a stray Westie.

The photo is Rusty and Lily.

Fast forward to Sally, a Carolina Dog, who followed him home about the same time he brought Rusty home from his son’s house. Even swap. Okay. I adored Rusty, a Westie, who was low to the ground and white. Read lots of baths. Lots of mopping up South Carolina mud. Lots of his griping

about Rusty’s messes in the house. Rusty was so cute I almost did not mind. Lots of us both griping about Sally’s messes outside. Those I did mind. He practically forced me to find Rusty a home, but even though I begged him to find Sally a better home, she stayed through the winter.

Photo to left is Sally.

It got down to 16 degrees. If she stayed on the porch she chewed up the antique wicker. If she came in the house she chewed up the sofa. He built her a dog house. I laid awake nights, praying she was somehow warm out there. I swore never again. I kept on begging him to find her a better home than we could give her. When I was hospitalized he took her to the pound, saying he realize she would be too much for me when I got home. I called the shelter and told them what a wonderful dog she was – smart and playful, eager to please, a perfect dog for adolescent boys who would play with her. I never heard back from them. I still worry. Make that grieve.

He said he’d like another cat, this time to live outdoors. At the animal shelter I found a beautiful little silver tabby, named what else – Silver. After she was spayed and vaccinated, I set her up in a secure warm building, with lots of good food and a litter box. She apparently loves it as she has never even tried to wander off. Soon Panda showed up. We live in the country. Animals, especially cats, come and go. Panda is black and white, a perfect buddy for Silver. Soon a huge yellow Tom spotted Panda and nailed her before I could stop him. I heard her yowl. So now Panda is pregnant.

Photo to right is Silver.

One day I heard a shotgun blast. I saw him coming back into the house carrying his gun. I never saw Tom again. I’m still heartsick. I am getting over knee replacement surgery and have not been able to wrestle Panda into a cage and take her to the vet. Our area lacks a spay neuter program for strays. He refuses to pay a vet the full price. I can't even think about that now.

Panda hunts and kills birds. I hate this, but she is just being a cat. I like birds, but I understand the laws of nature. She brought a bird into her and Silver’s building. Feathers everywhere. Next thing I know, the door to the building is closed and both cats are shut out away from their food and water. He had already gotten rid of the litter box, which Silver used but Panda didn’t. Said they are outdoor cats. They go to the bathroom outside. He ranted all day about the feathers mess in the building. I knew what was coming. He wanted to be rid of Silver and Panda both.

Panda and Silver both claiming the rug.

Picture this: Beautiful fall afternoon, the two of us standing on the back porch, him yelling, me fighting for control. I am headed out to sweep up the feathers.

"I can’t believe you’d let a cat... a cat... believe me… I am this close..." He pinched his fingers together.

"You wanna know what’s wrong with me? There’s nothing wrong with me. It’s you and those cats."

"Convenient for you to think of that in the last five minutes."

"Cats! They’re cats for God’s sake!"

"I thought you liked cats."

"Not when they make messes..."

"All cats are messy. You are being cruel."

"Cruel? I’m not cruel."

"I know you don’t think so, but I don’t agree."

A week has gone by.

He locked Silver and Panda out of their building again today.

It is turning cold.

I unlocked the door and let them back in.

When he saw it he freaked. Raging so the neighbors could hear, I'm sure.

I stood my ground.

Torn up, that's what I am.

Photo, right, Fearless and Sally, nose to nose.

Behind all this is Fearless, the cutest little four-pound MinChi who ever lived. I brought him home from the pound the same day as Silver. He was going to be my pal who would help me when Lily goes. She is already 11, with arthritis. Fearless earned his name by protecting me from a pit bull who wandered into the yard, which is not fenced. Before we'd had him a month, he got hit by a car. I still long to feel his silky little belly under my hand at night. So now when I think of having to lose Silver and Panda, on top of Suze, Rusty, Sally and Fearless -- and knowing Lily's days are growing shorter, it all piles in on top of the greater loss -- the loss of my husband.

Saturday, October 22, 2011

Does Alzheimer's short circuit grief or make it worse?

Does AD interrupt normal processing of events, such as grieving a divorce after being married more than 35 years? I grabbed my second husband straight off the courthouse steps, so to speak, and we became a couple before the ink was dry on his divorce papers. In fact, we had met the year before, when he was still married but separated. I, on the other hand, had been divorced 17 years and had already gone through grieving the loss of a life that was not all bad. I had sorted through all the physical, mental and spiritual junk and had moved into another realm.

He hadn’t.

Therefore, it should have been no surprise to me when it hit him; it took me a few months, however, to realize that this was normal grief and not part of the disease.

His divorce is seven years old, where mine is 25 years old. We married less than two years ago. Still honeymooners. If that seems surprising in the face of this horrible disease, just chalk it up to the triumph of the human spirit. Even AD has not wiped out our attraction for one another. Not yet anyway. So when he recently started vocalizing constantly about all the mistakes he has made, I naturally assumed he considered me one of them. But he doesn’t.

What’s happening is a tribute to our love and devotion to one another. He is falling apart, but he’s doing it in a safe place. At some level he trusts my love enough to reveal himself to me. He isn’t grieving the loss of his ex-wife, the person. He’s grieving the loss of that life. It was a life where he was young and healthy, strong and dependable. He knew who he was as well as lifelong friends and neighbors. Now he is in a different state geographically as well as emotionally. His state of mind changes daily. He can no longer trust his own eyes and ears. His feet and legs betray him often. He denies AD as the problem, but he knows his mind is an ever-changing array of confusion. However, deep down in his soul he knows God gave me to him to help him through this. Or maybe that’s my imagination. Even so, I believe it strongly enough for both of us. And at nearly 70 years of age, I have learned to trust my signal that something is right. It is joy.

When I have hit on the truth about something, I feel joy.

Joy is the tipoff.

Now I can listen to him lamenting without feeling sick about it. Yes, in addition to AD, my husband is coming apart. No, I can’t reason with him and make him feel better because his reasoner is broken. But I understand completely because I went through the same thing after my divorce.

I was married to my first husband for 31 years, and believe me it was not all bad. I missed so much about that life when it was over. I had to reinvent myself. And for my new husband to have to reinvent himself now that he has Alzheimer’s? How is that supposed to work?


I’m trying to find a way to make this funny. Ever since I had my knee replacement, my husband is obsessed with housework – cobwebs mostly.

Actually, he freely admits that until I was away from home for three weeks, he never noticed them before. Believe me, that is not because they were not there. It’s just that we live in the country, amidst spiders and such. Ya knock ‘em down, they build ‘em back. No big deal.

Until now. When I was in rehab he began noticing things like dust and cobwebs. He figured out a system to make cleaning the kitchen easier. (This you will not find me complaining about.) Dishwashers were foreign objects to him. Now our dishwasher is his friend.

This could be funny. He went to Lowe’s and bought a 12- foot pole to attach to the vacuum so he could reach the high ceilings. One night he cleaned them all down then took a flashlight the next morning and located the offenders. He killed at least half-dozen grandmother spiders. They are not large enough to be grandfather spiders. This is why this is not funny: He hates our home and where we are living. At a time when I most need to be settled in my life, he is in such an uproar that he actually said, out loud, “How did two people ever get themselves into such a tragic situation.”

-- Tragic? I asked.

-- Yes. This is a tragedy.

I walked out of the room, thinking This man is not only demented, he is a fool.

Dementia is so much more than memory loss.

And the last thing dementia is, is funny.

Friday, October 21, 2011

One of those ditto days

When my mother's dementia grew worse by the day, she got meaner and meaner. My brother and I shared responsibility for making sure she was cared for, in her own home, by one of several paid caregivers, or else we did it ourselves. It got so bad, we would call each other up and say, "She got me."

That was all we needed to say. She could hurt us like only a mother can.

We did not know she had dementia. On her death certificate was "Alzheimer's." None of her doctors had ever mentioned it. We did not know enough to ask, until now that my husband has it, and my brother's in-laws also, so we know that was mother's problem all along. But because we did not know, we were denied the loving support found on message board.

On the spouse/caregiver forum, we feel free to vent, knowing however we feel, someone feels the same way. It helps. But at times I don't feel like going into details. So I'm going to start a thread titled, "Ditto."

Ranting, raving, and nit-picking the stupid stuff is destructive to me -- both when I do it and when I read too much of it. Yet I need to give and receive support. Maybe "ditto" will become shorthand for I hear you, I understand how you feel, I would help if I could, and here's a huge hug.

Monday, October 17, 2011

Who is nuts here?

He still drives.

He has a doctor's appointment in Greenville, 46 miles away. I am not going with him this time. He says he will be fine. It just a rotator cuff check. He has been in physical therapy the past six weeks.

He is standing in the doorway with his phone in his hand.

"I'm driving the Blazer. Keep your phone handy in case I break down or something."

Alert...alert...alert... here it comes.

"It's a miracle if I get back safely with the junk I drive."

Crashing. I can't stop myself.

"Then drive the pickup!"

I am shouting now.

"You have a practically brand new not even paid for pick up truck sitting out there. Drive that!"

They can hear me next door, I'm sure. I detect a slight upturn of his lips. He has done it again.

"S...! Why do I let you push my buttons! Why do you say things like that just as you're leaving. You love to get me upset. You can't let me be peaceful for five minutes!"

This did not just start. He had been digging at me all morning.

I had been working on the computer. He stood in the doorway and told me it was time to join the "real world." Said he wanted to turn the heat on to check it out before it gets cold.

"Okay, fine. Turn it on."

"Well, aren't you going to do anything?"

"Like what?"

"Well, I don't know. Something."

"No. Just turn it on."

The hvac system is two years old. Maybe three. Not expecting an explosion or anything.

He turned it on. It did not explode. Heat gently rose from the grates, on cue. He was clearly aggravated.

"Well, we still need to put propane logs in that fireplace, in case the heat goes out."

"We talked about that last year, didn't we?"

But he did not get his way last year. Nor will he this year. Propane gives off fumes. I have COPD. End of discussion. I shall not shout about it.

So now we're sitting on the porch. The weather is spectacular! A tad warm for fall, but crisp still.

"That old man was right. We're going from 90 degrees one day to cold the next and that will be that. We don't have seasons change anymore."

"Yes, I know." Nevermind that the season is changing as we sit there watching it change. says agree with him, therefore we shall have seasons no more. It therefore shall go from hot to cold because he said so.

I have agreed with him twice. 1)No seasons. and 2) Ok, turn on the heat. He is antsy. He cannot seem to get ready to go to the doctor. Something is missing. He figures it out.

So he manages to frame it in a way I cannot agree - the Blazer is likely to break down. It is junk. That much is true. But he cannot leave the house without his "fix" -- me yelling at him.

I am an idiot. Maybe even a paranoid idiot. He needs for me to yell?

I need to yell?

Alzheimer's is winning.

Friday, October 14, 2011

Exercise is our defense against genetics

Canadian Mike Bates wrote an article for The Windsor Star about Dr. Norman Doidge, author of The Brain That Changes Itself, a book about how we can actually change the physiological structure of our brains.

A self-proclaimed exercise geek, Bates follows the research. He is a certified personal trainer who teaches kinesiology at the University of Windsor, and owns Refine Fitness Studio in Windsor.

Bates and Doidge (and others), believe exercise is the only activity that has been shown to increase the production and conductivity of neurons in the brain. He goes on to explain how neurons are the basic building blocks of our nervous system.

"Protein is the basic building block of muscle, but without proper functioning neurons our muscles would not know how to move or would not move as quickly and effectively. A neuron's key function is to transmit information in the body.

"According to Dr. Arthur Kramer, a faculty member in neuroscience and psychology at the University of Illinois at Urbana in Champaign: 'Exercise has neuroprotective effects enabling higher levels of cognition and delaying the onset of various forms of dementia such as Alzheimer's disease.'

"There is a substantial amount of research on the effect that exercise has on the brain. The literature shows a significant protective effect of physical activity on cognitive function and on decreased incidence of dementia, with the benefits lasting up to several decades. A few studies of human subjects older than 65 years showed that exercising at least 15 to 30 minutes three times weekly reduced the probability of developing Alzheimer's disease, even in subjects who were genetically predisposed.

"The majority of the research in this area shows that aerobic exercise has the biggest impact on cognition and overall brain functioning. This is not to say that strength training and stretching should be forgotten. There are many studies that show us the health benefits of resistance training and stretching.

"If you aren't getting this, then read it again: Regular exercise will not only help you live a longer more enjoyable life, it will help your brain function and decrease the chance of all kinds of health conditions as you get older - even if you are genetically predisposed."

Emphasis mine. The part that really grabbed my attention is that exercise offers some defense even against genetics. Every one who knows me knows my husband carries the Apoe4 gene, and that Alzheimer's is well underway at our house. I've been wondering what would motivate me to exercise. I believe that if I would he would.

Right now we are both doing physical therapy, him for a torn rotator cuff, me for a knee replacement. We are both in pretty sorry shape at the moment. We can't let that stop us. I also have COPD. Between his brain and my lungs, we simply must not stop exercising, even when therapy is finished.

Saturday, August 6, 2011

Dear Alzheimer's Association Leadership

Some folks are getting more and more upset with the Alzheimer's Association. I am happy to give them as much publicity as I can. This is important because so many of us look to for information.

Dear Alzheimer's Association Leadership

Alzheimer's can grab hold of your mind early

There are loads of good Alzheimer blogs out there. I like this one from Salinas, CA.

From Home Care Monterey CA - Family In-Home Caregiving Blog - View from an (unnamed) private duty caregiver

With Medicare, Medi-Cal and Private Insurance all looking to slash costs, some are questioning whether it is worth the financial cost of testing for a disease if there is no cure for it. But what about the human cost if someone has disturbing symptoms and a Doctor doesn't want to test for a disease because there is no cure?

This is a disturbing moral dilemma that I am sure will be more and more common as more baby boomers retire and the cost of medical care continues to soar. The Monterey Herald highlighted this issue on the front page of the health section on Thursday, with a focus on the tragic Alzhiemer's disease.

"I don't remember if I had a bath," Barbara Lehser, only 54 years old, told the paper. "It took me two hours to follow a recipe. I drove to my childhood homestead the other week instead of my own home. It's really scary," she said. Her Doctors and many others are arguing over whether to test her for Alzheimer's disease.

The debate was in high gear at the Alzheimer's Association International Conference held in Paris France last week (July 2011), where research on new methods such as easier brain scans, an eye test and a blood test made it clear there will be more tools for Alzheimer's diagnosis in the future.

Current drugs only treat Alzheimer's disease symptoms. They only work on half of the people they are prescribed to, and they only last for one year on average. Some argue against diagnosing and treating Alzheimer's victims. There is no data "to show that knowing makes any difference in outcomes. Until we do, this is going to be a tough sell," Dr. Kenneth Rockwood of Dalhousie University told the paper.

As regular readers of my blog know, I am an avid supporter of the Alzheimer's Association, a great group of people who help the families of those suffering from Alzheimer's disease. They are also the largest private funder of Alzheimer's research in the United States and have been involved in every major discovery over the past three decades. Having cared for my grandmother for more than five years before she passed away in January, I can tell you that there is nothing more terrifying than losing your mind and not knowing why. I completely disagree with Dr. Rockwood and anyone else who is in support of letting sleeping dogs lie.

If someone is losing their memory, or in the case of Ms. Lehser, driving back to a childhood residence instead of going home, they want to know why. Although the research studies indicate that treatments for Alzheimer's disease are only 50% successful and last only a year, on average, averages can be deceiving. We went through myriad medications for Nana, and have done the same for numerous Clients of Family inHome Caregiving with Alzheimer's and dementia. Some work, some don't. Everyone has different body chemistry. But having even one day with a loved one who is disappearing before your eyes is better than nothing. I wouldn't give up any of those lucid moments with my grandmother for any amount of money.

I once worked as a temporary employee for an HMO and at their weekly staff meeting they were talking openly about how they wished a prematurely born baby would die. The ICU care was just killing their budget and their bonuses were going to suffer. I walked off of the job in disgust. We can not make life and death or quality of life decisions based on money, it is not moral. Ms. Lehser's story is, thankfully, a rare one. Most people don't get Alzheimer's disease until they are in their senior years.

However, it is not unheard of.

In a village in Columbia, early onset Alzheimer's affects almost everyone. Their memories start failing in their 40's, sometimes as early as 32, and the average resident has full-blow Alzheimer's by the age of 47. Tragic as it is, the village is a great setting for a research study. Inbreeding and environment are two possible causes. Unfortunately the region is filled with drug traffickers and it's been difficult to get a full-blown research project done. However, it does show two things. One: Alzheimer's doesn't affect everyone, and there are likely cause and effects that can be discovered by studying populations like this; and, Two: the concept that Alzheimer's disease is an old person's disease that nothing can be done about because it is a function of age is a false one.

Tuesday, August 2, 2011

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

Tuesday, June 28, 2011

Learning to live by Alzheimer's rules

"It takes a lot of energy, learning, and patience to deal with Alzheimer's disease." So says Bob DeMarco, author of the Alzheimer's Reading Room.

No kidding.

One minute I'm his favorite person. The next minute I'm his worst enemy. What did I do wrong?

I left a bottle of water sitting around open.

"I just don't understand why anybody would do that!" he repeats over and over.

As his world becomes more confused, he understands less and less and wails louder and louder about trivial matters until I am agreeing with him that I'm the worst wife in the world and he is absolutely right, I'm just no damn good.

Yet it is way too early in the game to get too frustrated. At least he's not accusing me of stealing his things, or threatening to kill me. Maybe it will never come to that, but for some it does. And worse.

I read of Alzheimer's patients who remain sweet and gentle, never uttering an unkind word. My husband is not one of those.

What I should have done was not leave the bottle there. But I am messy. I am having a devil of a time obeying his new rules. Open bottles of water were not a problem before AD. And they may not be a problem tomorrow. The rules change. Every day there is a new rule.

Caregivers spend a lot of time tap dancing, trying to understand what their loved ones need. We have to hang loose and be ready to shift into their dimension at any minute. For some of them, perfect order would not be enough to allay their fears. So meeting their needs as they arise is about all we can do, while accepting that no matter what we do it will never be enough.

However, at times his dimension becomes a lovely place to be. He apparently feels happy, peaceful, grateful and content for a little while. These are the precious moments to savor. I'm going to remember them later, even though he won't.

Sunday, June 26, 2011

The difference between Alzheimer's and cancer

When I knew he had Alzheimer's, I wanted to fill his days with memory-makers, just as I would if he had been diagnosed with some type of incurable cancer. The problem is, no matter how unforgettable a day or an hour might be, he's going to forget it. It's the nature of the beast eating his brain. So I slog on, knowing these good days and hours are disappearing behind him, and I'm left to remember alone.

Friday, June 24, 2011

We have a new motto at our house: Just start now...

Never had much of a heart for service.  Self-sacrifice was never my strong suit, especially when it came to men.But the mighty oak bends under a mightier wind. Solid ground gives way to rushing waters and begins anew downstream. At last I loved someone enough to try to adapt to him. Good thing. He couldn't change if he wanted to. Can't reason with him, his reasoner is broken, to quote an expert on the Alzheimer's message board,, my lifeline to sanity and instruction.

Bob DeMarco, author of the Alzheimer's Reading Room, and caregiver to his mom, says an alternative universe moves into your house. He calls it Alzheimer’s World. It has a language of its own. The other day he wrote about how when the craziness starts, you just take one step to the left, and you are out of your reality into theirs, where things make sense to both of you, where, if you can remember in time, you say the most comforting thing, which probably has very little resemblance to anything other people would recognize as truth. There is only one truth in Alzheimer's World. Theirs.

However, occasionally their truths become life lessons, such as when he walked into my office and announced he had come up with a new motto. 

I started to take one step to the left.

 "Well, you know how I have a lot of regrets...well, what if I just start now just being the best I could have always been."

Sometimes his reasoner works just fine.