I remember when I used to be critical of people who put their elderly parents in nursing homes so they didn’t have to take care of them. In my idealistic mind I could take care of husband, children and home in a single bound, and even take on the wrenches that got thrown into the works on a daily basis. And never get my Super Mom cape dirty. I was adamant that neither my husband’s mother nor my mother would ever spend a day in a nursing home. What did I know?
His mother spent the last 15 months or so of her life in a nursing home. My husband didn’t tell me why. He’s not much of a communicator. All he would say was that “It’s not a good idea.” I was hurt and jumped to the conclusion that I wasn’t considered good enough to take care of a woman who was still sharp-minded and able to take care of herself. Seven years later I learned there were health issues. It had nothing at all to do with me. Why didn’t my husband tell me?
Now my mother has lived in a nursing home for 19 months. She is more docile now. I recall many difficult visits when she got angry because we wouldn’t bring her home from that place. Now she says, “If you have to be someplace like this, this is the place to be. They take good care of us here.”
The turnover in staff is high. That concerns me. When a family develops a relationship with the caregivers who look after their loved ones, and suddenly the place is filled with a lot of new faces, relationship building begins all over again. There is no security in knowing that the caregivers know Mom and care about her. And how many times do I have to ask, “Will someone help her with her teeth? They are a mess. She can’t remember to do it on her own and she would be so embarrassed if she realized what condition her teeth are in.” I wonder, if I took a mirror in to mount on the wall, would she notice then? Probably not. She can lose me sitting right beside her.
I used to feel guilty about Mom being there. Now I feel guilty because I can’t get there every day to visit with her for half an hour or so, to play Uno or Yahtzee with her, or draw with her, or just walk with her. It’s important that she have stimulation to keep the brain function she has. And it’s been said by staff members themselves that there is little of that for the Alzheimer’s residents. No wonder I was asked to come and volunteer there. But there are all of the other family obligations I have. And there isn’t a place closer to home that I know of so I can visit more often.
So, we just do the best we can from day to day. And now I understand why people have placed their elderly or special needs loved ones in a facility that can better see to the physical needs, even if they don’t see to the intellectual and emotional needs. Family can still see to those if they are willing.
No guilt today. But I do need to go and visit with my mom. I’ll take milkshakes and we’ll play Yahtzee, and I will remember for both of us. For today, my other priorities will have to wait.
Wednesday, February 23, 2011
Wednesday, February 16, 2011
Tears
I’m…frustrated, reminded again of what I have lost as Mom journeys through the later stages of Alzheimer’s.
It used to be when something happened in the world that piqued my interest, Mom and I would talk, share our opinions, debate things like the nature/nurture debate and, well, just about anything. She was wise and knowledgeable, had a lot of common sense. And she always helped me to get things into perspective. I tried to do the same kinds of discussions with my husband, but he’s just not into that. I might as well talk to that wall.
So, someone posted a joke at one of my online writers groups. It set something off inside of me. Even as I was going to hit the enter key to post it I thought maybe I shouldn’t. But it seemed to be something that begged, perhaps needed to be said. Eh, well. You win some and you lose some.
What does that have to do with Alzheimer’s?
Well, the person with Alzheimer’s isn’t the only one who suffers loss. Family members and close friends suffer losses, too. When they forget, we remember. And where do we go to talk to someone who will be patient, understanding and non-judgmental? If our spouses don’t understand or take an interest in us, what are we supposed to do? How do we…put everything into perspective when we don’t have a sounding board…when we feel so alone?
Sitting here crying isn’t going to help anyone. It isn’t going to fix anything. It isn’t going to make the Alzheimer’s go away. But maybe the tears will be a cleansing thing so I will wake up in the morning ready for the next round.
It’s supposed to be cloudy and 60. Surely there is an ice cream place open year round so I can break Mom out of the nursing home for a while and get her a treat. She loves ice cream. And she says she loves being with me. I’m feeling the same love for her even if we talk about the same thing over and over 300 times.
It used to be when something happened in the world that piqued my interest, Mom and I would talk, share our opinions, debate things like the nature/nurture debate and, well, just about anything. She was wise and knowledgeable, had a lot of common sense. And she always helped me to get things into perspective. I tried to do the same kinds of discussions with my husband, but he’s just not into that. I might as well talk to that wall.
So, someone posted a joke at one of my online writers groups. It set something off inside of me. Even as I was going to hit the enter key to post it I thought maybe I shouldn’t. But it seemed to be something that begged, perhaps needed to be said. Eh, well. You win some and you lose some.
What does that have to do with Alzheimer’s?
Well, the person with Alzheimer’s isn’t the only one who suffers loss. Family members and close friends suffer losses, too. When they forget, we remember. And where do we go to talk to someone who will be patient, understanding and non-judgmental? If our spouses don’t understand or take an interest in us, what are we supposed to do? How do we…put everything into perspective when we don’t have a sounding board…when we feel so alone?
Sitting here crying isn’t going to help anyone. It isn’t going to fix anything. It isn’t going to make the Alzheimer’s go away. But maybe the tears will be a cleansing thing so I will wake up in the morning ready for the next round.
It’s supposed to be cloudy and 60. Surely there is an ice cream place open year round so I can break Mom out of the nursing home for a while and get her a treat. She loves ice cream. And she says she loves being with me. I’m feeling the same love for her even if we talk about the same thing over and over 300 times.
Wednesday, February 9, 2011
Embracing It
I visited Mom today. Next month will be 10 years since her diagnosis. In 2005 her physician said he’d read about Namenda and wanted to add it to Mom’s daily pharmaceutical cocktail. Up until then, he hadn’t prescribed any of the other four drugs for Alzheimer’s. When I walk into the nursing home, Mom’s face lights up when she sees me. She doesn’t remember anything we talk about, but when we’re talking she understands what we are discussing. Somewhere in the discussion we conclude:
I say to her, “Please don’t forget who I am.”
She says, “I will never forget you.”
“Promise?”
“Yes,” she always answers.
And when I talk to God I pray, “Please, be kind to my mother.”
Given that the average Alzheimer’s patient lives eight years with the disease and we are now at the 10-year mark and she still recognizes all of us, I’m confident that God’s hand protects my mother, is answering my prayers. And I am encouraged that God will bring another miracle to mankind through Mom.
So, my blog about Alzheimer’s is taking a kind of turn. I want to be on the cutting edge of Alzheimer’s technology, research, to understand it and help others understand it as we face the global epidemic of Alzheimer’s Disease.
“While there is no cure for Alzheimer’s Disease,” advises the Alzheimer’s Association, “there are five prescription drugs approved by the U.S. Food and Drug Administration (FDA) to treat it’s symptoms.”
• Donepezil (Aricept) ~ for treatment of all stages of Alzheimer’s.
• Galantamine (Razadyne) ~ for mild to moderate stages.
• Rivastigmine (Exelon) ~ for mild to moderate stages
• Tacrine (Cognex) ~ rarely prescribed because of possible side effects, including liver damage.
• Memantine (Namenda) ~ for moderate to severe Alzheimer’s Disease.
Aricept, Razadyne, Exelon and Cognex are “cholinestrerase inhibitors,” and are used to treat symptoms related to memory, thinking, language, judgment and other thought processes. These drugs increase the levels of acetylcholine. This chemical helps deliver messages in the brain.
“But Alzheimer’s Disease damages or destroys the cells that produce and use acetylcholine, thereby reducing the amount available to carry messages. A cholinesterase inhibitor slows the breakdown of acetylcholine by blocking the activity of acetylcholinesterase by blocking the activity of acetylcholinesterase. By maintaining acetylcholine levels, the drug may help compensate for the loss of functioning brain cells.”
The inhibitors may slow progression of the disease for six months to a year. Combining drugs would like result in greater frequency of side effects (nausea, vomiting, loss of appetite, increased frequency of bowel movements.)
Namenda is a “receptor antagonist,” the first drug of its kind. It is used to “improve memory, attention, reason, language and the ability to perform simple tasks. “ Namenda regulates glutamate which is essential in learning and memory. Glutamate is involved in information processing, storage and retrieval.” Too much glutamate disrupts and kills brain cells.
Statistically, Namenda (receptor antagonist) significantly improves mental function and the ability to perform daily activities, according to several studies. Reportedly, it doesn’t help those with the lowest cognitive function. (For more detailed information, please visit the Alzheimer’s Association website at www.alz.org.
My goal is to find a way to check Mom out of the nursing home permanently and bring her home to live with me. She deserves to spend the rest of her life piddling around in a garden in the backyard, setting up her easel to paint or sit at the organ playing the music she so enjoyed before Alzheimer’s stole her memories.
I say to her, “Please don’t forget who I am.”
She says, “I will never forget you.”
“Promise?”
“Yes,” she always answers.
And when I talk to God I pray, “Please, be kind to my mother.”
Given that the average Alzheimer’s patient lives eight years with the disease and we are now at the 10-year mark and she still recognizes all of us, I’m confident that God’s hand protects my mother, is answering my prayers. And I am encouraged that God will bring another miracle to mankind through Mom.
So, my blog about Alzheimer’s is taking a kind of turn. I want to be on the cutting edge of Alzheimer’s technology, research, to understand it and help others understand it as we face the global epidemic of Alzheimer’s Disease.
“While there is no cure for Alzheimer’s Disease,” advises the Alzheimer’s Association, “there are five prescription drugs approved by the U.S. Food and Drug Administration (FDA) to treat it’s symptoms.”
• Donepezil (Aricept) ~ for treatment of all stages of Alzheimer’s.
• Galantamine (Razadyne) ~ for mild to moderate stages.
• Rivastigmine (Exelon) ~ for mild to moderate stages
• Tacrine (Cognex) ~ rarely prescribed because of possible side effects, including liver damage.
• Memantine (Namenda) ~ for moderate to severe Alzheimer’s Disease.
Aricept, Razadyne, Exelon and Cognex are “cholinestrerase inhibitors,” and are used to treat symptoms related to memory, thinking, language, judgment and other thought processes. These drugs increase the levels of acetylcholine. This chemical helps deliver messages in the brain.
“But Alzheimer’s Disease damages or destroys the cells that produce and use acetylcholine, thereby reducing the amount available to carry messages. A cholinesterase inhibitor slows the breakdown of acetylcholine by blocking the activity of acetylcholinesterase by blocking the activity of acetylcholinesterase. By maintaining acetylcholine levels, the drug may help compensate for the loss of functioning brain cells.”
The inhibitors may slow progression of the disease for six months to a year. Combining drugs would like result in greater frequency of side effects (nausea, vomiting, loss of appetite, increased frequency of bowel movements.)
Namenda is a “receptor antagonist,” the first drug of its kind. It is used to “improve memory, attention, reason, language and the ability to perform simple tasks. “ Namenda regulates glutamate which is essential in learning and memory. Glutamate is involved in information processing, storage and retrieval.” Too much glutamate disrupts and kills brain cells.
Statistically, Namenda (receptor antagonist) significantly improves mental function and the ability to perform daily activities, according to several studies. Reportedly, it doesn’t help those with the lowest cognitive function. (For more detailed information, please visit the Alzheimer’s Association website at www.alz.org.
My goal is to find a way to check Mom out of the nursing home permanently and bring her home to live with me. She deserves to spend the rest of her life piddling around in a garden in the backyard, setting up her easel to paint or sit at the organ playing the music she so enjoyed before Alzheimer’s stole her memories.
Wednesday, February 2, 2011
No more driving
Mom’s doctor suspected Alzheimer’s Disease in early 2001. I have to say I was concerned when Mom said she didn’t recognize where she was, but all the other cars were turning right out of the parking lot so she did, too. When she got to the traffic light she began to recognize her surroundings.
When she went in the car by herself, Dad worried the whole time she was gone. Was she OK? Was she lost? Could she find her way home?
The doctor ran every test he could think of to eliminate the conditions that could have similar symptoms until he ruled everything out.
“The only way we can know for sure,” he said, “is to do an autopsy on the brain. Obviously we can’t do that while she is living.”
The family was divided over the issue. Mom was upset to know her brain was dying. Dad didn’t understand the disease. My brothers didn’t want to admit this was Mom’s condition. And I was trying to embrace the diagnosis so I could be a strong ally against it. Mom needed someone outside of herself to be on top of this. Inside I was screaming, “Not my mom! This won’t claim my mom!!!”
One of my brothers was particularly stubborn about accepting Mom’s diagnosis until Dad died. He stayed with Mom a couple of days a week so I could go to my home and reassure my husband he wasn’t being abandoned. One day this brother called our youngest sibling and said someone needed to come immediately because Mom had told him to “get the hell out of her house.” He finally came on board because Mom had never talked like that to any of us.
Dad didn’t know how to handle Mom’s progressive decline. He told me to take her car to my house so she wouldn’t drive it, but when she got difficult he made me take it back. My brother disabled it so it wouldn’t start. At a doctor’s appointment the doctor asked, “How are things going? What do you think?” Dad answered, “I think she’s a little better.”
“You need to understand,” the doctor said, “she’s not going to get better. Her condition is going to progressively get worse. This isn’t going to go away. It’s going to worsen.”
Dad nearly cried.
When Mom insisted she could drive, I finally said, “We will go to the doctor and talk to him about it. If he say it’s OK for you to drive, fine, you can drive.” We all agreed with that. And we scheduled an appointment.
The doctor gave her a list of things to remember. He had her repeat them as he said them. Then he asked another question immediately followed by a request to name that list of five items. She couldn’t remember even one. She argued with him, though, that she could still drive. He would not budge. She was not happy that she was no longer allowed to drive.
These days she no longer argues about driving. She will say, “I want to go to my own home, but I don’t suppose that’s ever going to happen. I’m going to die here in this nursing home.” And I still offer words of hope, “Mom, if it wasn’t for the Alzheimer’s you could be in your own home. If they can find a cure, a medicine that will give you back your memory, you can go home with me, immediately. You can live with me.” “I’d like that,” she says.
I am trying to find the congressman or senator who is pushing the FDA (Food and Drug Administration) to approve a drug that, in trials, is bringing people’s memories back. He has three family members with severe Alzheimer’s. The FDA reportedly said it has to insure quality of life, to which this man has asked what kind of quality of life is it for someone who can’t remember anything? If you saw this news report (I did not, but was told about sometime after the airing) or you know who this man is, please leave a comment and let me know.
When she went in the car by herself, Dad worried the whole time she was gone. Was she OK? Was she lost? Could she find her way home?
The doctor ran every test he could think of to eliminate the conditions that could have similar symptoms until he ruled everything out.
“The only way we can know for sure,” he said, “is to do an autopsy on the brain. Obviously we can’t do that while she is living.”
The family was divided over the issue. Mom was upset to know her brain was dying. Dad didn’t understand the disease. My brothers didn’t want to admit this was Mom’s condition. And I was trying to embrace the diagnosis so I could be a strong ally against it. Mom needed someone outside of herself to be on top of this. Inside I was screaming, “Not my mom! This won’t claim my mom!!!”
One of my brothers was particularly stubborn about accepting Mom’s diagnosis until Dad died. He stayed with Mom a couple of days a week so I could go to my home and reassure my husband he wasn’t being abandoned. One day this brother called our youngest sibling and said someone needed to come immediately because Mom had told him to “get the hell out of her house.” He finally came on board because Mom had never talked like that to any of us.
Dad didn’t know how to handle Mom’s progressive decline. He told me to take her car to my house so she wouldn’t drive it, but when she got difficult he made me take it back. My brother disabled it so it wouldn’t start. At a doctor’s appointment the doctor asked, “How are things going? What do you think?” Dad answered, “I think she’s a little better.”
“You need to understand,” the doctor said, “she’s not going to get better. Her condition is going to progressively get worse. This isn’t going to go away. It’s going to worsen.”
Dad nearly cried.
When Mom insisted she could drive, I finally said, “We will go to the doctor and talk to him about it. If he say it’s OK for you to drive, fine, you can drive.” We all agreed with that. And we scheduled an appointment.
The doctor gave her a list of things to remember. He had her repeat them as he said them. Then he asked another question immediately followed by a request to name that list of five items. She couldn’t remember even one. She argued with him, though, that she could still drive. He would not budge. She was not happy that she was no longer allowed to drive.
These days she no longer argues about driving. She will say, “I want to go to my own home, but I don’t suppose that’s ever going to happen. I’m going to die here in this nursing home.” And I still offer words of hope, “Mom, if it wasn’t for the Alzheimer’s you could be in your own home. If they can find a cure, a medicine that will give you back your memory, you can go home with me, immediately. You can live with me.” “I’d like that,” she says.
I am trying to find the congressman or senator who is pushing the FDA (Food and Drug Administration) to approve a drug that, in trials, is bringing people’s memories back. He has three family members with severe Alzheimer’s. The FDA reportedly said it has to insure quality of life, to which this man has asked what kind of quality of life is it for someone who can’t remember anything? If you saw this news report (I did not, but was told about sometime after the airing) or you know who this man is, please leave a comment and let me know.
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