"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.
Wrong.
"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?
Pretend?
What now?
Saturday, July 16, 2011
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.
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.
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.
Wednesday, July 6, 2011
St. Petersburg Times: Doctor says an oil lessened Alzheimer's effects on her husband
St. Petersburg Times: Doctor says an oil lessened Alzheimer's effects on her husband
I have put us both on coconut oil, because of this article.
I have put us both on coconut oil, because of this article.
Sunday, July 3, 2011
I Wonder What it Feels Like to be Unable to Remember?
I Wonder What it Feels Like to be Unable to Remember?
Click on above.
by Bob DeMarco, The Alzheimer's Reading Room.
Click on above.
by Bob DeMarco, The Alzheimer's Reading Room.
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.
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.
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