MY mid-stage Dementia

MY mid-stage dementia

“I live in my own little world…but it’s okay. They know me here”

I am now in the mid-stage of vascular dementia. I was diagnosed with progressive vascular dementia @ 6 months ago. It has given me a chance to do a lot of research on cognitive impairment, so I have a better understanding of what to expect now and in the future. I swore to myself that I would battle the symptoms, but that isn’t facing reality. The symptoms are winning. 

In the past 6 months, I have LOST: 

Lost the ability to live alone in my apartment. I have moved from the hospital, to a nursing home, to my sister’s apartment until my disability benefits come in and I can return to a nursing facility for care. 

The doctors revoked my driver’s license, since I no longer have the ability to drive. I get lost and could hurt myself or someone else if I get confused behind the wheel of a car. 

I lost my job. I was a teacher for a high school but had to be taken to the hospital on a few occasions because I suddenly went “blank” during the day and could no longer remember who I was, where I was, or what I was doing. 

I relinquished my car because I can no longer drive and cannot make payments on it anymore. 

I lost all credit cards. I can’t pay them anymore and cannot be trusted to make online purchases because I cannot think clearly enough to understand financial obligation. 

I have lost most of my independence. I need to be cared for and monitored so I don’t do stupid stuff and accidentally harm myself or others. 

I have lost my ability to go to church without someone to supervise me. 

I have lost my ability to watch an entire movie or T.V. show because concentrating hard makes my head hurt. 

I had to close my bank account and withdraw any remaining cash. 

I have lost my ability to speak clearly. I was a professional speaker. Now, I stutter severely as I struggle to find words and put together logical sentence structures. 

I have lost the ability to walk without a walker. I wobble and fall without it. 

I’ve lost the ability to go an entire night sleeping. I wake up often because my body hurts, I am frustrated, or I need to pee every few hours. 

I have lost friends. I don’t want to socialize anymore because I am not who I once was. The disease has become embarrassing. 

Right now, I struggle with: 

Memory. Details of long-term memory come about frequently, but short-term memory is crap. I have to double-check to make sure I have taken my medications, to make sure I have eaten, to make sure I continue to exercise. And, on some days, I’ve lost memory of who loved ones are. On worse days, I’ve lost memory of who I am. 

Making appropriate decisions. Choices are really frustrating, especially if there are more than 2 options. I have to make lists, when I am able, to keep me on my daily schedule. Who the hell has to have a checklist reminder so they will remember to brush their teeth? I do. Personal grooming, for example, shaving, showering, clipping my fingernails and toenails, etc. is a hassle. The details of it are on my checklist because it’s just a bother. I have a tendency to wear the same clothes for days. And I used to be OCD about it personal hygiene habits. 

Social interactions have become very, very minimal. I used to be described as an extrovert. I loved people. I was in clubs. I was an active member of Toastmasters, a public speaking organization. I was a retail manager of many people. I loved hanging out with friends. Now…people just aren’t my thing. I don’t mind having evenings with my sister and her husband, but strangers and crowds more than two people are confusing and frustrating. And what an irony! I have to depend on people in order to live. 

Restlessness. I don’t like spending the day in my room, but I don’t like going out either. I have enough memory of what my life used to be like, that I remain agitated. I want to drive. I want to work. I want to spend time with my girlfriend. I want to go grocery shopping. I want to cook. But I want to be left alone more than all of those things. I am beginning to have sundowning behaviors. I want to sleep during the day and stay awake at night. I have to set visual reminders of when day and night occur. I am beginning to struggle with “challenging behavior”. I don’t want to be a jerk, but fighting outward aggression is a constant fight. It isn’t anyone’s fault that I have lost independence. It’s not God’s fault. But I’d like to make someone suffer for what’s happening. 

I am getting anxiety. I used to have hallucinations and I’m grateful that those are now gone, but I am suffering with a little paranoia from time to time. “What’s in this food?” “Are all of these pills really necessary, or is the doctor in cahoots with the pharmacy companies?” The news on T.V.: I used to thoroughly enjoy watching the news, but now I take too much of it personally. People get killed on the roadways, people are gunned down in the streets as innocent bystanders, the government is CRAZY. Okay, maybe that last one isn’t paranoia, it’s just a hard fact. 

Paranoia. I am aware that others talk about me behind my back. Yes, I appreciate the fact that they are making plans to take care of me now and in the future, but it’s an odd feeling that they have to discuss it without me. I get it. I just don’t like it. 

I’m losing weight. No, I don’t recommend dementia for a quick weight loss program, but I’ve lost at least 40 pounds in the past 6 months. I don’t have even one pair of pants that fits me correctly. I have to wear a belt at all times, or my pants fall around my knees. 

Urinating. I’m a frequent fountain. I can’t believe how often I have to pee. And, I use to be able to hold it like a camel in a desert. Now, when I get that special signal from my bladder, I know it’s time to go to the toilet immediately! At least every few hours every night. After every glass of water. I do NOT want to end up in adult diapers, but I also know what’s coming. 

# 2: While I’m doing potty talk, I might as well confess to the side effects of one of my medications for diabetes: metformin. The manufacturer claims it “may” cause diarrhea. MAY? That is the understatement of the century. I eat bananas daily to offset the metformin curse, but it’s an unpleasant daily battle.

Interesting facts about dementia

“Group projects help me understand why Batman works alone”

Interesting facts about dementia as of 2010

“10 Facts About You: 1. You're reading this. 2. You're realizing this is a stupid fact. 4. You didn't notice I skipped three. 5. You're checking now. 6. You're smiling. 7. You're still reading this even though it's stupid. 9. You didn't realize I skipped eight. 10. You're checking again and smiling about how you fell for it again. 11. You're enjoying this. 12. You didn't realize there's only supposed to be ten facts.”

• There are more than one hundred conditions that cause dementia. 

• Although dementia is far more common in the geriatric population, it may occur as a child.

• Dementia is currently the 2nd largest cause of disability burden after depression.

• Dementia reduces the ability to learn, reason, retain or recall past experience and there is also loss of patterns of thoughts, feelings and activities. 

• More than 5 million of the US population suffer from Alzheimer's disease.  

• In the coming years dementia is projected to be the largest source of burden of disease for women and the 5th largest for men.

• Dementia, though often treatable to some degree(symptoms), is usually due to causes that are progressive and incurable.

• Chronic use of substances such as alcohol or recreational drugs can also predispose the patient to cognitive changes suggestive of dementia.

• Dementia ranks as the fourth leading cause of death among the population aged 65 years and over.

• There are now an estimated twenty-four million people living with some form of dementia in the world.

• Less than ten percent of cases of dementia are due to causes that may presently be reversed with treatment. 

• Alzheimer's disease is the 7th leading cause of death in the United States. 

• Depression affects 20–30 percent of people who have dementia.

http://factspage.blogspot.com/2010/12/interesting-facts-about-dementia.html

Types of Dementia

Types of dementia

“Some call it multi-tasking. I call it doing something while I try to remember what I was trying to do in the first place.”

The term "dementia" is thrown around a lot in discussions of elderly individuals, but what exactly does it mean? Dementia is a general term for memory loss that is severe enough to interfere with daily life. This general term encompasses many different diseases, of which Alzheimer's is only the most common. Following is a brief summary of the different types of dementia: 

Alzheimer's disease. Alzheimer's disease accounts for 50 to 70 percent of all cases of dementia, according to the Alzheimer’s Association. Alzheimer’s is a partially hereditary disease that causes a loss of brain cells. It gets progressively worse over time and is fatal. There is no cure, but there are medications that can treat the symptoms and slow its progress. I will cover Alzheimer’s in more detail in a following chapter. 

Vascular dementia. Vascular dementia is the second most common form of dementia and is caused by poor circulation to the brain. It may occur after a major stroke or a series of minor strokes. The disease sometimes progresses in recognized steps. The symptoms of vascular dementia vary depending on which area of the brain is affected, but they can include memory loss, confusion, difficulty concentrating, and reduced ability to carry out daily activities. While there is no cure, treatment of high blood pressure and good diabetic control can slow the progress. In addition, drugs that are used to treat Alzheimer's disease can also be used to treat vascular dementia. Some individuals have both Alzheimer's disease and vascular dementia. This is called mixed dementia and may have a greater impact on the brain than one form of dementia by itself. Medications include: 

Cholinesterase inhibitors. These medications — including donepezil (Aricept), rivastigmine (Exelon) and galantamine (Razadyne) — work by boosting levels of a chemical messenger involved in memory and judgment. Although primarily used to treat Alzheimer's disease, these medications might also be prescribed for other dementias, including vascular dementia, Parkinson's disease dementia and Lewy body dementia. Side effects can include nausea, vomiting and diarrhea.

Memantine. Memantine (Namenda) works by regulating the activity of glutamate, another chemical messenger involved in brain functions, such as learning and memory. In some cases, memantine is prescribed with a cholinesterase inhibitor. A common side effect of memantine is dizziness.

Other medications. Your doctor might prescribe medications to treat other symptoms or conditions, such as depression, sleep disturbances or agitation.

“Dementia – Diagnosis and treatments”, Mayo Clinic, 2019, https://www.mayoclinic.org/diseases-conditions/dementia/diagnosis-treatment/drc-20352019, Accessed January 2019,  

Other types of dementia: 

Parkinson's disease. Parkinson's disease starts off causing physical symptoms, such as tremors, stiffness, difficulty walking, and speech problems. Dementia may develop late in the disease but not everyone with Parkinson's disease experiences dementia. There are no drugs to treat dementia caused by Parkinson's, but several medications can treat the physical symptoms of Parkinson's disease. 

Lewy body dementia. Lewy body dementia is caused by deposits of protein on the brain cells. It has characteristics of both Alzheimer's disease and Parkinson's disease, such as memory loss and slowed movement, but it can also cause visual hallucinations and delusions. There is no cure, but some drugs used to treat Alzheimer's disease and Parkinson's disease may help with some of the symptoms. 

Frontotemporal dementia. Frontotemporal dementia affects the front and side lobes of the brain and causes personality and behavior changes. The symptoms vary depending on which areas of the brain are affected but can include inappropriate actions, apathy, excessive happiness and excitement, lack of judgment, and difficulty in using and understanding language. There is no treatment or way to slow the progress of frontotemporal dementia. 

Creutzfeldt-Jakob disease (CJD). Caused by a protein in the brain that takes on an abnormal shape, CJD is a rare disease that progresses quickly. A variant of CJD can be caused by eating cattle afflicted with "mad cow" disease. The symptoms of CJD include memory impairment, depression, and problems with movement. CJD is fatal and death can occur within a year of contracting the disease. There is no effective treatment. 

Normal pressure hydrocephalus (NPH). NPH is a rare disease that occurs when fluid builds up in the brain. It causes mental decline as well as loss of bladder control and difficulty walking. It can be treated by surgically by inserting a tube (called a shunt) into the brain to drain the fluid. 

Huntington's disease. Huntington's disease is an inherited brain disorder that is fatal. It starts with physical symptoms, such as jerky movements and problems with balance, and as it progresses can lead to trouble with memory and concentration. There are no treatments to stop or slow the disease, but some of the symptoms can be controlled by medication. 

Wernicke-Korsakoff syndrome. Wernicke-Korsakoff syndrome is a brain disorder often caused by alcoholism. It leads to confusion, gaps in memory, and making up information, among other things. If caught early enough, it can be treated, and the damage can be reversed. 

Writing with Dementia

Writing with demneria

Some of you may be thinking that I am aalways pretty clear because I am able to write my thoughts down for a book and I have no sign of dementias. So I thought I would do my best to rite a chapter on a day where in my brain is going slow to show the effir  of the way my brain usually workds. The computer fixes a lot of words automatically so the speall ing s are not as bad, but I know the speallings are not good especially for someone who used to have a very high iq. 

My head hurts. My eyes are blurry so I have to foocsu very hard to get the words on paper and to try  to make sentences atat make sense. I am sure I will not be able to write for too longn since my head hurts. It also mmakes me sleepyu to try to write and concentrate so very hard a t the same time. The sames tthings happen when I go for a walkkk. I have to coincentraye very hard to remember the stesp on walking properly. It sounds silly to me that I have to thingk very hard about walking but I do. I can still shave my face at this point, but only one certain days because ei am afraid of using the razor. My nurses recommend that I only hse electric razors. When I was a kid, my mom and dsd bought me a cowboy outfit for Christmas thet was red and black. I loved that ooutfot. And I got one time a lost in space toy set where the vehicle went around a tubne somehow but I don’t remember how it workd.s. 

I still like to praya a lot. I think having talks with God are very important. I listedn to an application on my phone called Youoversion. It reads the scraipture to me outlout which is very cool. 

Well my head burts so I am going to stop writing. Maybe tomorrow culd be a good day. 

I reached Stage 4

“I have reached Stage 4” by James Hamilton

I spend WAY too much time in emergency rooms in various hospitals. Something is wrong, I can tell, but I keep getting diagnosed with a variety of issues: Type 2 diabetes, circulation issues, cholesterol problems, high blood pressure, anxiety, depression and other crap that I have no idea where this stuff is coming from. 

My friends encourage me to see doctors. They know something is wrong. My family encourages me to seek psychiatric help. They know something is wrong and they are worried because I seem to rely on emergency room visits. 

I eat healthy. I exercise at least 4 days per week. I could stand to lose a few pounds. I weigh @ 230 lbs. at 5’ 11” and my “ideal” body weight is 185 lbs. I’d be happy at 200 lbs. I go for walks almost daily. I work as a teacher at a local high school, but the challenge of teaching is becoming increasingly difficult. But I’m not sure why. I do crossword puzzles daily and play online brain games because I enjoy them (at this point, I didn’t think I needed them, I’ve just always been a brain game nerd). 

Finally, after being told to go see my general practioner by many ER doctors, I set an appointment with my general practioner. I feel silly about it, but I prepare a list of questions to ask because my memory has been “slipping” lately. Questions like: 

• What do you think is causing my recent memory problems?

• Do you think my symptoms are due to circulation problems in my brain?

• I’ve been in the hospital a lot lately. What tests do I needbecause I have a bunch of symptoms, but I don’t seem to be getting any better?

• Can you help me get a plan in place to work with all my doctors? You should be the “hub” of all the information from my various hospital visits and doctors. 

• How do all the recent diagnosis affect how I manage my other health conditions?

My GP recommended I undergo some tests. Most of them were repeats from my hospital visits, but I could tell he was looking for something specific. 

He ordered tests for: 

• Blood pressure

• Cholesterol

• Blood sugar

• Tests to rule out other potential causes of memory loss and confusion, such as:

• Thyroid disorders

• Vitamin deficiencies

He reviewed my overall neurological health by testing: 

• Reflexes

• Muscle tone and strength, and how strength on one side of your body compares with the other side

• Ability to get up from a chair and walk across the room

• Sense of touch and sight

• Coordination

• Balance

My general practioner asked me a series of questions about my history, even though he had most of the information on file. A lot of these questions were regarding new symptoms and history. 

1. What kinds of thinking problems and mental lapses are you having? When did you first notice them?

2. Are they steadily getting worse, or are they sometimes better and sometimes worse? Have they suddenly gotten worse?

3. Has anyone close to you expressed concern about your thinking and reasoning?

4. Have you started having problems with any long-standing activities or hobbies?

5. Do you feel any sadder or more anxious than usual?

6. Have you gotten lost lately on a driving route or in a situation that's usually familiar to you?

7. Have you noticed any changes in the way you react to people or events?

8. Do you have any change in your energy level?

9. Are you currently being treated for high blood pressure, high cholesterol, diabetes, heart disease or stroke? Have you been treated for any of these in the past?

10. What medications, vitamins or supplements are you taking?

11. Do you drink alcohol or smoke? How much?

12. Have you noticed any trembling or trouble walking?

13. Are you having any trouble remembering your medical appointments or when to take your medication?

14. Have you had your hearing and vision tested recently?

15. Did anyone else in your family ever have trouble with thinking or remembering things as they got older? Was anyone ever diagnosed with Alzheimer's disease or dementia?

WAIT A MINUTE! “Dementia”? What the heck? I’m 57 years old and have a pretty high I.Q. I can take care of myself and have a fairly healthy lifestyle. What makes you ask about dementia??

Then, my doctor ordered more detailed tests: 

Brain imaging

Images of your brain to pinpoint visible abnormalities caused by strokes, blood vessel diseases, tumors or trauma that may cause changes in thinking and reasoning. A brain-imaging study can help your doctor zero in on more likely causes for your symptoms and rule out other causes.

Brain-imaging procedures your doctor may recommend helpingdiagnose vascular dementia include:

• Computerized tomography (CT) scan. For a CT scan, you'll lie on a narrow table that slides into a small chamber. X-rays pass through your body from various angles, and a computer uses this information to create detailed cross-sectional images (slices) of your brain.

A CT scan can provide information about your brain's structure; tell whether any regions show shrinkage; and detect evidence of strokes, ministrokes (transient ischemic attacks), blood vessel changes or tumors. Sometimes you'll receive an intravenous (IV) injection of a contrast agent that will help highlight certain brain tissues.

• Magnetic resonance imaging (MRI). An MRI uses radio waves and a strong magnetic field to produce detailed images of your brain. You lie on a narrow table that slides into a tube-shaped MRI machine, which makes loud banging noises while it produces images.

MRIs are painless, but some people feel claustrophobic inside the machine and are disturbed by the noise. MRIs are generally the preferred imaging test because MRI can provide even more detail than CT scans about strokes, ministrokes and blood vessel abnormalities.

Carotid ultrasound

This procedure uses high-frequency sound waves to determine whether your carotid arteries — which run up through either side of your neck to supply blood to the brain — show signs of narrowing as a result of plaque deposits or structural problems. Your test may include a Doppler ultrasound, which shows the movement of blood through your arteries in addition to structural features.

Neuropsychological tests

This type of exam assesses your ability to:

• Speak, write and understand language

• Work with numbers

• Learn and remember information

• Develop a plan of attack and solve a problem

• Respond effectively to hypothetical situations

It took weeks for all of the test results to come back in and for me to be able to see my GP for a follow-up appointment. 

I was scared out of my mind because I knew the results were not going well. 

Then, 2 doctors in the hospital explained to me the results of all the testing. “You have progressive vascular dementia. There is no cure”. 

I am increasingly forgetful. I forget things I’ve already said and things I need to do. Finding the right words has become a struggle. I’m afraid I won’t be able to work if this keeps up.

​Family and friends are beginning to notice that I have declining mental capabilities. Recent events and how to do certain tasks elude me.  I am beginning to have a difficult time expressing my thoughts. I rely on “my paper” with my detailed information on a daily basis. I rely on checklists that I created and have posted throughout my apartment: personal hygiene, the kitchen safety, making sure the water faucets are off, etc. 

Even with the checklists, I keep finding stuff in the wrong places in my apartment. Putting stuff in the refrigerator or oven seem to be my favorite spots. My microwave oven caught on fire and I have no idea what I did wrong, but I was able to put the fire out and throw the thing in the dumpster. I would be extremely embarrassed if someone saw the way I have to live now, so I don’t allow anyone to come to my apartment. My landlord has figured out that I need additional reminders to pay the rent. Bill collectors call me all the time or send me emails telling me I’m past due. I’ve started paying bills when a company says they are going to cut off service. 

My mood is not good. Then again, I just had 2 doctors and a psychiatrist tell me I’m going to die from lack of blood flow to my brain and that my condition will rapidly decline. No wonder I’m irritated! But little things really make me mad. I threw a container of hummus across the den because the salsa in the middle of the hummus was smeared really strangely. Afterwards, I realized that was a pretty stupid move. Especially while I was cleaning hummus out of my carpet. 

I can’t sleep very long. Naps are great but sleeping 8 hours overnight is a thing of the past. I’ve caught myself, on more than one occasion, walking around outside in the middle of the night. No idea where I was going or why I was outside. 

I started doing research about dementia, when I can, and decided to start writing a book about this journey. I have always found writing to be relaxing and I am enough of a dork that I really enjoy doing research. Plus, writing and doing research aides in denial of the disease. 

Normal memory loss vs Dementia

“Chocolate comes from coco which is a tree, that makes it a plant. 

Therefore, chocolate is a salad”

Normal memory loss vs. Dementia memory loss

NORMAL​​​​​DEMENTIA 

Forgetting someone’s name or a word ​Losing one’s self in a conversation, stopping, and 

In a conversation but remembering it later. ​Forgetting what to say next. Repeating               yourself often. 

Forgetting an appointment from time​Forgetting recently learned information, or having

to time. ​to ask for it over and over. Increasing reliance on 

​others to help remember to do tasks. 

Forgetting what day it is occasionally, ​Completely losing track of the day, month, year. 

but figuring it out later. ​Forgetting where you are and how you got there. 

Getting irritated when one’s normal ​Getting extremely agitated by a change in routine, 

routine is altered. ​especially when the agitation is atypical of one’s personality. 

Making bad decisions, occasionally, ​Consistently demonstrating poor financial 

when it comes to money. ​decisions. 

Feeling tired or worn out at times​Removing oneself from routines due to 

and wanting to stay home and rest. ​forgetfulness or desire for isolation. Not wanting to venture out of the comfort of one’s home. 

Losing an item occasionally. ​Putting items in strange places and not being able to retrace one’s steps to find them. 

Vision changes requiring a new ​Increased difficulty processing what you are seeing.

glasses prescription. ​Hallucinating.