Sunday, March 22, 2020
March 22, 2020
It's weird the things John remembers and the things he doesn't. Recently I dropped a Trader Joe's box of dark chocolate peanut butter cups on the floor spilling about half of them. Well they're a precious, delicious commodity so I scooped them up, brushed them off, and kept them! John was appalled. He refused to eat them. And then over the next week, whenever I took them out to eat them, he refused them because some of them had been on the floor. Refusing sweets is totally out of character for him. But the fact that I spilled them all over the floor? THAT he remembers! He doesn't remember that I asked him to close the frig door that he left open, and he doesn't remember that I've asked him to take his pills 15 times (no exaggeration), but he remembers the peanut butter cups. It's the strangest thing. He seems to remember negative things, and not positive things. So odd.
Thursday, March 19, 2020
March 19, 2020
The Corona virus social distancing is in full form. Schools are closed or attempting to continue with online learning, many people are off work, and we are stuck in our homes except for essential things. Essential is interpreted pretty widely so far though.
I dropped off a bag of cookies and treats for my mom yesterday. We got lucky and arrived during a shift change, so I spotted one of the staff members from my mom's floor in the parking lot and asked her to deliver the bag to my mom. 20 minutes later I received a text from our favorite person working at Park Regency with a photo and a short video of my mom chomping on cookies and saying that she loves me. Now that puts a smile on my face!
John is stir crazy. He's aware that things are different, but doesn't understand why. He knows there is a virus, so in the last couple of days he thinks his saliva has the virus and wants to spit it out. That's gross and drives me nuts. So I repeatedly tell him to swallow his spit. He wants to wipe his nose with lots of toilet paper all the time, and since toilet paper is a weirdly difficult item to buy, I'm trying to get him to do a whole lot less of that. He doesn't seem to want to use Kleenex. He also washes his hands a lot, then while they're damp he thinks they're sticky and wants to wash them again. Sometimes he wipes his wet hands with toilet paper which doesn't work well for obvious reasons. He continually asks me what we're going to do each day, and I answer that we have to stay home. So this Corona virus has erupted some weird OCD behaviors and it's driving me nuts!
I dropped off a bag of cookies and treats for my mom yesterday. We got lucky and arrived during a shift change, so I spotted one of the staff members from my mom's floor in the parking lot and asked her to deliver the bag to my mom. 20 minutes later I received a text from our favorite person working at Park Regency with a photo and a short video of my mom chomping on cookies and saying that she loves me. Now that puts a smile on my face!
John is stir crazy. He's aware that things are different, but doesn't understand why. He knows there is a virus, so in the last couple of days he thinks his saliva has the virus and wants to spit it out. That's gross and drives me nuts. So I repeatedly tell him to swallow his spit. He wants to wipe his nose with lots of toilet paper all the time, and since toilet paper is a weirdly difficult item to buy, I'm trying to get him to do a whole lot less of that. He doesn't seem to want to use Kleenex. He also washes his hands a lot, then while they're damp he thinks they're sticky and wants to wash them again. Sometimes he wipes his wet hands with toilet paper which doesn't work well for obvious reasons. He continually asks me what we're going to do each day, and I answer that we have to stay home. So this Corona virus has erupted some weird OCD behaviors and it's driving me nuts!
Sunday, March 15, 2020
March 15, 2020 - 2.0
There are 6 things that scientists and doctors agree that are important for brain health and the prevention or delay of Alzheimer's Disease:
1. Exercise Regularly - it improves blood flow and memory.
2. Food and Nutrition - the old 'you are what you eat'. Heart health is brain health. A diet rich in antioxidants. The Mediterranean diet is typically recommended.
3. Medical Health - control and reduce medical risks: Hypertension, diabetes, obesity, depression, head trauma, higher cholesterol, and smoking all increase the risk of dementia.
4. Sleep & Relaxation - Get enough sleep and control your stress.
5. Mental Interaction - Like everything else, use it or lose it. Learn knew things. I've read that watching TV is less healthy for our brains than staring at a blank wall.
6. Social Interaction - Be socially active. This goes beyond family; meet knew people and engage with them. Studies have shown that those with the most social interaction in their community experience the slowest rate of memory decline.
To me it all sounds great. But it's difficult to change our bad habits. I like to focus on the ones that come easy for me so I can feel successful once in a while! I know, I know...
1. Exercise Regularly - it improves blood flow and memory.
2. Food and Nutrition - the old 'you are what you eat'. Heart health is brain health. A diet rich in antioxidants. The Mediterranean diet is typically recommended.
3. Medical Health - control and reduce medical risks: Hypertension, diabetes, obesity, depression, head trauma, higher cholesterol, and smoking all increase the risk of dementia.
4. Sleep & Relaxation - Get enough sleep and control your stress.
5. Mental Interaction - Like everything else, use it or lose it. Learn knew things. I've read that watching TV is less healthy for our brains than staring at a blank wall.
6. Social Interaction - Be socially active. This goes beyond family; meet knew people and engage with them. Studies have shown that those with the most social interaction in their community experience the slowest rate of memory decline.
To me it all sounds great. But it's difficult to change our bad habits. I like to focus on the ones that come easy for me so I can feel successful once in a while! I know, I know...
March 15, 2020 - 1.0
I thought I'd include a description of Alzheimer's Stages that I was just reading from the Mayo Clinic. It's long, but worth skimming. John is in the moderate phase, my mom in severe (although the description is for late stage severe dementia; she's not late stage yet.)
The early signs of the disease may be forgetting recent events or conversations. As the disease progresses, a person with Alzheimer's disease will develop severe memory impairment and lose the ability to carry out everyday tasks.
Current Alzheimer's disease medications may temporarily improve symptoms or slow the rate of decline. These treatments can sometimes help people with Alzheimer's disease maximize function and maintain independence for a time. Different programs and services can help support people with Alzheimer's disease and their caregivers.
There is no treatment that cures Alzheimer's disease or alters the disease process in the brain. In advanced stages of the disease, complications from severe loss of brain function — such as dehydration, malnutrition or infection — result in death.
Alzheimer's disease tends to develop slowly and gradually worsens
over several years. Eventually, Alzheimer's disease affects most areas
of your brain. Memory, thinking, judgment, language, problem-solving,
personality and movement can all be affected by the disease.
There are five stages associated with Alzheimer's disease: preclinical Alzheimer's disease, mild cognitive impairment due to Alzheimer's disease, mild dementia due to Alzheimer's disease, moderate dementia due to Alzheimer's disease and severe dementia due to Alzheimer's disease. Dementia is a term used to describe a group of symptoms that affect intellectual and social abilities severely enough to interfere with daily function.
The five Alzheimer's stages can help you understand what might happen, but it's important to know that these stages are only rough generalizations. The disease is a continuous process. Each person has a different experience with Alzheimer's and its symptoms.
Alzheimer's disease begins long before any symptoms become apparent.
This stage is called preclinical Alzheimer's disease, and it's usually
identified only in research settings. You won't notice symptoms during
this stage, nor will those around you.
This stage of Alzheimer's can last for years, possibly even decades. Although you won't notice any changes, new imaging technologies can now identify deposits of a protein called amyloid-beta that is a hallmark of Alzheimer's disease. The ability to identify these early deposits may be especially important for clinical trials and in the future as new treatments are developed for Alzheimer's disease.
Additional biomarkers — measures that can indicate an increased risk of disease — have been identified for Alzheimer's disease. These biomarkers can be used to support the diagnosis of Alzheimer's disease, typically after symptoms appear.
Genetic tests also can tell you if you have a higher risk of Alzheimer's disease, particularly early-onset Alzheimer's disease. These tests aren't recommended for everyone, but you and your doctor can discuss whether genetic testing might be beneficial for you.
As with newer imaging techniques, biomarkers and genetic tests will become more important as new treatments for Alzheimer's disease are developed.
People with mild cognitive impairment have mild changes in their
memory and thinking ability. These changes aren't significant enough to
affect work or relationships yet. People with MCI
may have memory lapses when it comes to information that is usually
easily remembered, such as conversations, recent events or appointments.
People with MCI may also have trouble judging the amount of time needed for a task, or they may have difficulty correctly judging the number or sequence of steps needed to complete a task. The ability to make sound decisions can become harder for people with MCI.
Not everyone with mild cognitive impairment has Alzheimer's disease. MCI is often diagnosed based on the doctor's review of symptoms and professional judgment. But if necessary, the same procedures used to identify preclinical Alzheimer's disease can help determine whether MCI is due to Alzheimer's disease or something else.
Alzheimer's disease is often diagnosed in the mild dementia stage,
when it becomes clear to family and doctors that a person is having
significant trouble with memory and thinking that impacts daily
functioning.
In the mild dementia stage, people may experience:
During the moderate dementia stage of Alzheimer's disease, people
grow more confused and forgetful and begin to need more help with daily
activities and self-care.
People with the moderate dementia stage of Alzheimer's disease may:
In the late stage of the disease, called severe dementia due to
Alzheimer's disease, mental function continues to decline, and the
disease has a growing impact on movement and physical capabilities.
In late stage severe dementia due to Alzheimer's disease, people generally:
The rate of progression for Alzheimer's disease varies widely. On
average, people with Alzheimer's disease live between three and 11 years
after diagnosis, but some survive 20 years or more. The degree of
impairment at diagnosis can affect life expectancy.
Pneumonia is a common cause of death because impaired swallowing allows food or beverages to enter the lungs, where an infection can begin. Other common causes of death include dehydration, malnutrition, falls and other infections.
Overview
Alzheimer's disease is a progressive disorder that causes brain cells to waste away (degenerate) and die. Alzheimer's disease is the most common cause of dementia — a continuous decline in thinking, behavioral and social skills that disrupts a person's ability to function independently.The early signs of the disease may be forgetting recent events or conversations. As the disease progresses, a person with Alzheimer's disease will develop severe memory impairment and lose the ability to carry out everyday tasks.
Current Alzheimer's disease medications may temporarily improve symptoms or slow the rate of decline. These treatments can sometimes help people with Alzheimer's disease maximize function and maintain independence for a time. Different programs and services can help support people with Alzheimer's disease and their caregivers.
There is no treatment that cures Alzheimer's disease or alters the disease process in the brain. In advanced stages of the disease, complications from severe loss of brain function — such as dehydration, malnutrition or infection — result in death.
Alzheimer's stages: How the disease progresses
Alzheimer's disease can last more than a decade. See what types of behaviors are common in each of the stages as the disease progresses.By Mayo Clinic StaffThere are five stages associated with Alzheimer's disease: preclinical Alzheimer's disease, mild cognitive impairment due to Alzheimer's disease, mild dementia due to Alzheimer's disease, moderate dementia due to Alzheimer's disease and severe dementia due to Alzheimer's disease. Dementia is a term used to describe a group of symptoms that affect intellectual and social abilities severely enough to interfere with daily function.
The five Alzheimer's stages can help you understand what might happen, but it's important to know that these stages are only rough generalizations. The disease is a continuous process. Each person has a different experience with Alzheimer's and its symptoms.
Preclinical Alzheimer's disease
This stage of Alzheimer's can last for years, possibly even decades. Although you won't notice any changes, new imaging technologies can now identify deposits of a protein called amyloid-beta that is a hallmark of Alzheimer's disease. The ability to identify these early deposits may be especially important for clinical trials and in the future as new treatments are developed for Alzheimer's disease.
Additional biomarkers — measures that can indicate an increased risk of disease — have been identified for Alzheimer's disease. These biomarkers can be used to support the diagnosis of Alzheimer's disease, typically after symptoms appear.
Genetic tests also can tell you if you have a higher risk of Alzheimer's disease, particularly early-onset Alzheimer's disease. These tests aren't recommended for everyone, but you and your doctor can discuss whether genetic testing might be beneficial for you.
As with newer imaging techniques, biomarkers and genetic tests will become more important as new treatments for Alzheimer's disease are developed.
Mild cognitive impairment (MCI) due to Alzheimer's disease
People with MCI may also have trouble judging the amount of time needed for a task, or they may have difficulty correctly judging the number or sequence of steps needed to complete a task. The ability to make sound decisions can become harder for people with MCI.
Not everyone with mild cognitive impairment has Alzheimer's disease. MCI is often diagnosed based on the doctor's review of symptoms and professional judgment. But if necessary, the same procedures used to identify preclinical Alzheimer's disease can help determine whether MCI is due to Alzheimer's disease or something else.
Mild dementia due to Alzheimer's disease
In the mild dementia stage, people may experience:
- Memory loss of recent events. Individuals may have an especially hard time remembering newly learned information and ask the same question over and over.
- Difficulty with problem-solving, complex tasks and sound judgments. Planning a family event or balancing a checkbook may become overwhelming. Many people experience lapses in judgment, such as when making financial decisions.
- Changes in personality. People may become subdued or withdrawn — especially in socially challenging situations — or show uncharacteristic irritability or anger. Reduced motivation to complete tasks also is common.
- Difficulty organizing and expressing thoughts. Finding the right words to describe objects or clearly express ideas becomes increasingly challenging.
- Getting lost or misplacing belongings. Individuals have increasing trouble finding their way around, even in familiar places. It's also common to lose or misplace things, including valuable items.
Moderate dementia due to Alzheimer's disease
People with the moderate dementia stage of Alzheimer's disease may:
-
Show increasingly poor judgment and deepening confusion.
Individuals lose track of where they are, the day of the week or the
season. They may confuse family members or close friends with one
another or mistake strangers for family.
They may wander, possibly in search of surroundings that feel more familiar. These difficulties make it unsafe to leave those in the moderate dementia stage on their own.
- Experience even greater memory loss. People may forget details of their personal history, such as their address or phone number, or where they attended school. They repeat favorite stories or make up stories to fill gaps in memory.
- Need help with some daily activities. Assistance may be required with choosing proper clothing for the occasion or the weather and with bathing, grooming, using the bathroom and other self-care. Some individuals occasionally lose control of their bladder or bowel movements.
-
Undergo significant changes in personality and behavior.
It's not unusual for people with the moderate dementia stage to develop
unfounded suspicions — for example, to become convinced that friends,
family or professional caregivers are stealing from them or that a
spouse is having an affair. Others may see or hear things that aren't
really there.
Individuals often grow restless or agitated, especially late in the day. Some people may have outbursts of aggressive physical behavior.
Severe dementia due to Alzheimer's disease
In late stage severe dementia due to Alzheimer's disease, people generally:
- Lose the ability to communicate coherently. An individual can no longer converse or speak in ways that make sense, although he or she may occasionally say words or phrases.
- Require daily assistance with personal care. This includes total assistance with eating, dressing, using the bathroom and all other daily self-care tasks.
- Experience a decline in physical abilities. A person may become unable to walk without assistance, then unable to sit or hold up his or her head without support. Muscles may become rigid and reflexes abnormal. Eventually, a person loses the ability to swallow and to control bladder and bowel functions.
Rate of progression through Alzheimer's disease stages
Pneumonia is a common cause of death because impaired swallowing allows food or beverages to enter the lungs, where an infection can begin. Other common causes of death include dehydration, malnutrition, falls and other infections.
Saturday, March 14, 2020
March 14, 2020
The world has been crazy recently because of the COVID-19 virus. But this week that crazy spread to the US. (As though I didn't have enough crazy in my life!) Stores are being picked bare as people hoard food, water, toilet paper, paper towels, and disinfectants. Yesterday all the public schools in Southern California (at least as far as I know) closed for a few weeks to slow the spread of the virus. In the district where I work, school is closed for the students but all faculty and staff have to go to work - for now at least. My guess is that once the government entities figure out how to manage paying everyone, modifying school attendance rules, etc., then all the details will be worked out. So for now, I will continue to go to work as usual. I have no idea how we'll keep ourselves busy though, beyond a few days.
However, Easter Seals is closed too, so John can't go there while I'm at work. Jordan will be home much of the time so I'm hoping that will suffice in the short term. But she needs to concentrate on her classes (all of which are now online) so it's certainly not ideal. We'll take it day by day.
John is confused about Easter Seals. When I explain the current situation, he understands and is reassured. But once the clarity slips away he's concerned. He asks me "Did they cut me off from working there?" So he still thinks he's a volunteer. But he thinks they might not let him continue to volunteer. I believe he's concerned he's been fired from another job he loves. I assure him that no one is going there for now. I hope the disruption doesn't make it difficult for him to return there - I don't think it will. One of the women at Easter Seals works very closely with John and they have made progress together. She sent some interesting Alzheimer's information home with him which was very kind. She even gave us her personal phone number and offered to help us during this time if we need it. She is exceptional.
I'm worried about how John will do with so much free time on his hands. He gets more agitated when he's not involved in some kind of activity, or somehow kept busy.
I also received a call from my mom's memory care facility yesterday. For now they are not allowing visitors to protect their residents from the virus. It is more deadly for older people with existing health issues. So I can't visit her. It feels really odd. I know she's cared for, but if she's able to realize that I'm not visiting for a while - and I'm not sure she is - she won't understand why. I have a weird sense of freedom though. I feel guilty about this, guilty about feeling some relief that I can't visit her. It saves me at least an hour and half of my day. Unfortunately there's not a whole lot going on this weekend so I have plenty of time to visit her. It figures it works out that way.
Yep, life is crazy. Really crazy.
However, Easter Seals is closed too, so John can't go there while I'm at work. Jordan will be home much of the time so I'm hoping that will suffice in the short term. But she needs to concentrate on her classes (all of which are now online) so it's certainly not ideal. We'll take it day by day.
John is confused about Easter Seals. When I explain the current situation, he understands and is reassured. But once the clarity slips away he's concerned. He asks me "Did they cut me off from working there?" So he still thinks he's a volunteer. But he thinks they might not let him continue to volunteer. I believe he's concerned he's been fired from another job he loves. I assure him that no one is going there for now. I hope the disruption doesn't make it difficult for him to return there - I don't think it will. One of the women at Easter Seals works very closely with John and they have made progress together. She sent some interesting Alzheimer's information home with him which was very kind. She even gave us her personal phone number and offered to help us during this time if we need it. She is exceptional.
I'm worried about how John will do with so much free time on his hands. He gets more agitated when he's not involved in some kind of activity, or somehow kept busy.
I also received a call from my mom's memory care facility yesterday. For now they are not allowing visitors to protect their residents from the virus. It is more deadly for older people with existing health issues. So I can't visit her. It feels really odd. I know she's cared for, but if she's able to realize that I'm not visiting for a while - and I'm not sure she is - she won't understand why. I have a weird sense of freedom though. I feel guilty about this, guilty about feeling some relief that I can't visit her. It saves me at least an hour and half of my day. Unfortunately there's not a whole lot going on this weekend so I have plenty of time to visit her. It figures it works out that way.
Yep, life is crazy. Really crazy.
Monday, March 9, 2020
March 9, 2020
We saw John's neurologist this morning. We see him every 6 months - which is a good indicator that's there's very little that can be done for people suffering with Alzheimer's Disease. No reason to see the Dr if there's not much he can do.
We discussed the things that have been happening over the last 6 months. The Dr gave John the MMSE - Mini Menal State Exam. John scored an 11 out of 30. I think a score of 10 is considered severe dementia. 6 months ago John scored a 13. So that's depressing. However, 6 months ago the Dr started John on Aricept, the go to medication for Alzheimer's. Despite an improvement in cognition, John became very agitated so I called the Dr and discontinued the medication. Today the Dr suggested that we start Namenda first, a medication that helps with behavior issues. It was always the Dr's plan to start the medication at this time as a supplement to Aricept. So the plan now is to start with Namenda first and then add Aricept again in 3 months. The Dr said hopefully that will show a couple points improvement on the next MMSE. So we'll give that a try.
Although the Dr didn't mention it, the paperwork recommends what is essentially a Mediterranean diet and exercise. Beyond that, see you in 6 months.
Woohoo! John's sister is bringing over BJ's pizza tonight!
We discussed the things that have been happening over the last 6 months. The Dr gave John the MMSE - Mini Menal State Exam. John scored an 11 out of 30. I think a score of 10 is considered severe dementia. 6 months ago John scored a 13. So that's depressing. However, 6 months ago the Dr started John on Aricept, the go to medication for Alzheimer's. Despite an improvement in cognition, John became very agitated so I called the Dr and discontinued the medication. Today the Dr suggested that we start Namenda first, a medication that helps with behavior issues. It was always the Dr's plan to start the medication at this time as a supplement to Aricept. So the plan now is to start with Namenda first and then add Aricept again in 3 months. The Dr said hopefully that will show a couple points improvement on the next MMSE. So we'll give that a try.
Although the Dr didn't mention it, the paperwork recommends what is essentially a Mediterranean diet and exercise. Beyond that, see you in 6 months.
Woohoo! John's sister is bringing over BJ's pizza tonight!
Sunday, March 8, 2020
March 8, 2020
So this week there were a few unexpected blessings that put a big smile on my face. First John's brother and his wife came over with a full dinner. They brought absolutely everything needed and made us a delicious meal and spent the evening with us. That was a great way to start the work week!
Then John's high school alma mater had a formal fund raiser evening. One of his friends hosts a table each year, and the guys love to get together, sans wives, for the evening. John's friends worked together to figure out a carpool for John and took him to the dinner. He had a great time. And truth be told, I had a really nice evening enjoying a bottle of wine with a friend whose life is rather similar to mine. We were able to talk about the toll of care giving, our fears, and share some good laughs.
Another highlight - Easter Seals moved to a new location that a friend of ours built for them. John was a little confused about the move and the changes had him confused. But the new place is huge and bright and perfect for their group. One of the workers asked to meet with me. She explained the kinds of things that John is involved with there, and told me she is submitting a grant to get some financial assistance for us! That is absolutely huge because I spend a lot of time worrying about how I can pay for his current care, let alone his future care. Easter Seals is $85 per day, so they think they might be able to get a couple days per week covered for us. I am thrilled! And VERY thankful.
Also this week Danielle and I attended a lecture at UCI about detecting Alzheimer's a decade before symptoms hit. It was really interesting to learn about the direction science is heading. But at the conclusion of her talk, the Dr said "The most important thing we can do is help people enjoy their lives." That was my prime take away from the evening. The most important thing I can do is help John and my mom enjoy their lives as best they can.
Of course I have to share a negative event of the week. Jordan was in a car accident. It was the other driver's fault and Jordan's car tipped up on it's side but then dropped back on it's tires. She's sore but otherwise is OK. Weirdly, the other driver refused to speak to Jordan and exchange information. She did call the police and Danielle went to help Jordan. We think her car is probably totaled, but we hope not. The next day we went to get Jordan's rental car, and tried to get her stuff out of her car at the tow yard (the police wouldn't let her get into her car because it was in the middle of the street). All of this was very confusing for John and I had to explain it to him again and again. He doesn't remember that Jordan was in a car accident, but it's familiar if I explain it to him again.
My mom was really tired yesterday. After I stuffed her full of snacks, she said she wanted to go to her room and sleep. She was already in her room, and already in bed. So I gave her a kiss and left her to get some sleep.
John said something this morning that struck me - "I feel like I'm lost in the forest." What an extremely difficult way to live day in and day out.
Then John's high school alma mater had a formal fund raiser evening. One of his friends hosts a table each year, and the guys love to get together, sans wives, for the evening. John's friends worked together to figure out a carpool for John and took him to the dinner. He had a great time. And truth be told, I had a really nice evening enjoying a bottle of wine with a friend whose life is rather similar to mine. We were able to talk about the toll of care giving, our fears, and share some good laughs.
Another highlight - Easter Seals moved to a new location that a friend of ours built for them. John was a little confused about the move and the changes had him confused. But the new place is huge and bright and perfect for their group. One of the workers asked to meet with me. She explained the kinds of things that John is involved with there, and told me she is submitting a grant to get some financial assistance for us! That is absolutely huge because I spend a lot of time worrying about how I can pay for his current care, let alone his future care. Easter Seals is $85 per day, so they think they might be able to get a couple days per week covered for us. I am thrilled! And VERY thankful.
Also this week Danielle and I attended a lecture at UCI about detecting Alzheimer's a decade before symptoms hit. It was really interesting to learn about the direction science is heading. But at the conclusion of her talk, the Dr said "The most important thing we can do is help people enjoy their lives." That was my prime take away from the evening. The most important thing I can do is help John and my mom enjoy their lives as best they can.
Of course I have to share a negative event of the week. Jordan was in a car accident. It was the other driver's fault and Jordan's car tipped up on it's side but then dropped back on it's tires. She's sore but otherwise is OK. Weirdly, the other driver refused to speak to Jordan and exchange information. She did call the police and Danielle went to help Jordan. We think her car is probably totaled, but we hope not. The next day we went to get Jordan's rental car, and tried to get her stuff out of her car at the tow yard (the police wouldn't let her get into her car because it was in the middle of the street). All of this was very confusing for John and I had to explain it to him again and again. He doesn't remember that Jordan was in a car accident, but it's familiar if I explain it to him again.
My mom was really tired yesterday. After I stuffed her full of snacks, she said she wanted to go to her room and sleep. She was already in her room, and already in bed. So I gave her a kiss and left her to get some sleep.
John said something this morning that struck me - "I feel like I'm lost in the forest." What an extremely difficult way to live day in and day out.
Sunday, March 1, 2020
March 1, 2020
I just finished a book by the cousin of a friend of mine. It's call "Stop and Smell the Garbage" by Christine McMahon Sutton. The author wrote about her experience as a caregiver to her husband who had early onset Alzheimer's. He only lived 4 years with the disease, but many of their experiences are similar to ours. I highly recommend the book to other caregivers. She writes about the struggles, regrets, lessons learned, and missed signs during the time before diagnosis.
I also recommend "The Forgetting" by David Shenk. Although the book is a little old now, it's a great explanation of the disease, it's history, and it's future. I especially resonated with the section that compares age milestones of children with the reversing milestones of Alzheimer's sufferers. When I compared what John does now with childhood milestones, it seems his symptoms are similar to a 4 or 5 year old. That was particularly horrifying to understand.
Another great book is "On Pluto" by Greg O'Brien. He is a journalist who has Alzheimer's and he explains what it is like to live with the disease.
There are lots of other good books, but these are ones that I found most helpful. I think knowledge is power, so the more I can learn, the better prepared I'll be for whatever comes next.
John keeps popping in the room telling me that he needs to make some calls tomorrow to get to the bottom of this. I'm not sure what he's talking about, so I ask, then get a lecture about how we're not on the same page and it takes too much time to explain it to me. He also touched some button on the electricity meter on our breaker box. He's sure he messed up something important. But it looks fine to me.
He's cranky today. He seems annoyed that there isn't something we need to do right now. I think he's happier when we're busy running from one thing to another. And that's what we do most of the time. But today is on the quiet side and that makes him stir crazy. So he's busy unloading a closet and his taking books off his bookshelf. He's concerned that things are missing.
We visited my mom earlier today, right after her lunch. I showed up with a bunch of snacks and she happily ate them all, and asked for more. She also asked me to take her back to her room. But we were in her room, and she was in bed, which is her favorite place.
I also recommend "The Forgetting" by David Shenk. Although the book is a little old now, it's a great explanation of the disease, it's history, and it's future. I especially resonated with the section that compares age milestones of children with the reversing milestones of Alzheimer's sufferers. When I compared what John does now with childhood milestones, it seems his symptoms are similar to a 4 or 5 year old. That was particularly horrifying to understand.
Another great book is "On Pluto" by Greg O'Brien. He is a journalist who has Alzheimer's and he explains what it is like to live with the disease.
There are lots of other good books, but these are ones that I found most helpful. I think knowledge is power, so the more I can learn, the better prepared I'll be for whatever comes next.
John keeps popping in the room telling me that he needs to make some calls tomorrow to get to the bottom of this. I'm not sure what he's talking about, so I ask, then get a lecture about how we're not on the same page and it takes too much time to explain it to me. He also touched some button on the electricity meter on our breaker box. He's sure he messed up something important. But it looks fine to me.
He's cranky today. He seems annoyed that there isn't something we need to do right now. I think he's happier when we're busy running from one thing to another. And that's what we do most of the time. But today is on the quiet side and that makes him stir crazy. So he's busy unloading a closet and his taking books off his bookshelf. He's concerned that things are missing.
We visited my mom earlier today, right after her lunch. I showed up with a bunch of snacks and she happily ate them all, and asked for more. She also asked me to take her back to her room. But we were in her room, and she was in bed, which is her favorite place.
Subscribe to:
Posts (Atom)