Monday, May 21, 2012
The doctors were wrong. He was misdiagnosed.
My husband does not have Alzheimer's. Regardless of the blood draw and spinal tap results, mri and mini-mental exams, which all indicated early Alzheimer's (dementia of the Alzheimer's type), they were all wrong. In January 2012 he stopped taking Namenda, Seroquel, and Aricept. Just stopped. One day he declared he was not taking them any longer. The next thing I knew, he was out hiking and photographing waterfalls. These activities required him to learn how to use the camera, understand and follow maps, and interact with people along the way. He had to remember routes, drive mountain roads, slog through underbrush, climb over rocks and fallen trees, and get himself home in one piece. People with Alzheimer's do not behave this way.
We will never know what happened. He refuses to see another doctor, and I don't blame him. For all we know, his dementia might have been caused by untreated sleep apnea and a severe vitamin deficiency, both now corrected. He shows some cognitive impairment, but don't we all at this age. I know I do. When he got bored with hiking, he outfitted himself with new fishing gear and loaded up our freezer with trout.
I waited this long to write this post because I wanted to be sure his improvement was not temporary. Praise the Lord, so far so good. I guess I won't be an Alzheimer's Caregiver after all -- at least not for a while yet.
The falls at Brasstown Bald.
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.
--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
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.
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?
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?
Cobwebs
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.
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 alz.org 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.
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 alz.org 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.
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