The Very Human Story of Alzheimer’s Disease

This article is going to be one that attempts to put human emotions and faces on a disorder that is ravaging families and communities. First, we shall tackle the explanation of what Alzheimer’s disease is, and its stages.

Then, as the author of this piece, I will be relating some of my personal experiences from my years serving people who lived and died with Alzheimer’s and their families.

Be forewarned, what follows is not be pretty, but neither is this disease that robs people of their dignity, minds, homes, and lives.

The Very Human Story of Alzheimer’s Disease

The tale of Alzheimer’s disease is a human story involving the afflicted, their families and ultimately paid caregivers brought in to help. Sometimes these paid caregivers work in long-term care facilities and are uniquely trained to know how to help those who will have been living and ultimately will die from Alzheimer’s disease.

Alzheimer’s disease (AD) is a terrible disorder that robs human beings of the best of their golden years. When most folks are enjoying their retirement and their growing families, Alzheimer’s disease attacks stripping them of their memories, and ultimately their lives.

Photo by Nick Karvounis on Unsplash

The Three Progressive Stages of Alzheimer’s Disease

A slowly progressive disorder, AD strikes typically people around the age of 65. Usually, people of this age who are diagnosed with AD have a survival rate of up to eight years, but the older a person is when they are found to have AD the shorter the time until their death.

There are three general stages recognized in the progression of AD. These stages include mild (early stage), moderate (middle stage) and severe (late stage). Alzheimer’s disease affects different people in various ways with each person experiencing symptoms and survival rates differently.

As an important side note, it should be stated that Alzheimer’s disease is not what you might think. Many people believe that Alzheimer’s is a disease of the elderly only, but they are wrong. It is estimated that 200,000 people in the United States are living with early-onset Alzheimer’s Disease. Shockingly, this mind-robbing disorder affects people in ages ranging from their mid-30’s and into their 50’s.

Mild (Early Stage) Alzheimer’s Disease

In fact, AD lies dormant in the brain for decades and is only detected when a person or their family notices subtle changes in their loved one’s behavior. In what is termed the early stage of Alzheimer’s disease the person can still live independently. However, they may have problems remembering where they have placed items or fumble for the correct words when speaking.

It should never be taken for granted that the forgetfulness a person is experiencing is just a phase or something that will pass. The sooner treatment begins for Alzheimer’s the better the chances of longer life and better outcomes from any treatment options.

You should take yourself or your loved on to the doctor if you notice these warning signs:

• Trouble remembering the names of new people when they are introduced
• Having an increased problem performing tasks in social functions or at work
• Forgetting material that one has just read
• Losing or misplacing essential items such as keys or valuables
• Unusual inability to plan or organize a function
• Increasing problems with remembering to take medications

Only a doctor can rule out the other common issues that can cause these symptoms. You may need to have an MRI of your brain to look for any lesions or signs of a stroke and some blood work. Also, you may be given some memory tests to check for deficits.

Once the diagnosis is made, don’t panic. There is increasing evidence that a cure for AD could be around the corner and your life has not just ended. With the correct treatment, you can still enjoy life and your family for a long while yet.

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Moderate (Middle Stage) Alzheimer’s Disease

In the moderate stage (middle stage), the person will require a higher level of care. The moderate stage of AD is the longest and can last for many years.

In this stage, individuals may have a harder time performing essential tasks such as handling money, but they can still sit and reminisce about their lives. They may speak in confusing words and get uncharacteristically angry or act in odd ways.

The brain of the person living with Alzheimer’s disease is incurring damage to the nerve cells, and this makes it hard to express emotions and thoughts. It also keeps the person from being able to perform routine tasks such as cooking and cleaning.

Often during the moderate stage, the person will become increasingly unable to stay at home alone. They may become a danger to themselves if they are cooking or leave the house and not know how to return. Therefore, many families opt to either move their loved one into their homes or hire paid caregivers to keep an eye on their family member.

Severe (Late Stage) Alzheimer’s Disease

The last stage of Alzheimer’s is probably the hardest for family members to endure. In this stage, their loved one will still be able to speak words or phrases, but communication is increasingly difficult. In fact, they may not be able to carry on a conversation at all.

Memory and thinking continue to deteriorate, and the person living with AD may experience profound personality changes.

During this late stage, the person will require round the clock monitoring and extensive help with daily needs such as bathing and eating.

During this heartbreaking stage the family may see their loved one:
• Lose awareness of where and when they are located
• Experiencing severe changes in the ability to walk, sit and stand
• Lose the ability to swallow correctly
• Lose large amounts of weight
• No longer recognizing their family or old friends

During the last stage of Alzheimer’s disease, the person loses a significant amount of weight. This is because they are unable to hold still do to continually feeling agitation and increasingly having difficulty chewing and swallowing. Unfortunately, this weight loss makes the person living with AD vulnerable to infections and many finally succumb to pneumonia.

Photo by Ozan Safak on Unsplash

Putting a Human Face on a Family Tragedy
It was the 1980s when I worked in the long-term facility in my hometown. I was in my twenties and had no specialized training to work with the elderly as at that time there were no certification requirements in place. I was green as grass and entirely unprepared for the life lessons I was about to learn over the next decade.

To correctly put a face on how people, live and die with Alzheimer’s Disease I’m going to relate some of the stories of the courageous men and women I had in my care. I have changed the names to protect their privacy. Although they died decades ago, they still deserve all the dignity I can muster.

There were very training programs and no treatment for Alzheimer’s disease at all. Many times, personal physicians didn’t recognize that their patients had a dementia problem until it had advanced into the latter part of the middle stage.

Often families were caught off guard and were both horrified and embarrassed by the change in their family member’s behavior. They cared for them as best they could and when families could no longer meet the deepening needs of their mother or father they would bring them to us.

The Lost Dignity of Mrs. O.
Mrs. O. was in her late eighties and until a year before her admission had looked healthy and had traveled all over the world and loved to drive her race car in Italy. Then the family noticed changes in her behavior that told them something was very wrong.

They brought their mother home and began searching for a doctor to help her. That is when she received the diagnosis of Alzheimer’s disease. Because of her advanced age, her brain quickly deteriorated, and the family did the best they could to care for her. However, after the second year, they admitted her to our facility.

Photo by Daniele Fantin on Unsplash

Mrs. O. was very thin by the time we received her and would not unclench her teeth and continuously ground them. Luckily, she had a partial plate that we were able to remove which left a three-tooth long hole through which we could insert a syringe to feed her. She was a joy to care for. She was always laughing and smiling.

Mrs. O’s family was in deep distress not understanding at all the disorder that had claimed their mother’s dignity and mind. She had always been a meticulous dresser and took great pride in her appearance. Now she not only didn’t recognize her kids and grandkids but cared little about what she was wearing or even if her hair was combed.

When Mrs. O. died two years after entering our facility, her family was by her side. There were few tears as their grieving had already begun the day they realized their mother’s mind was forever gone.

The Suspicions of Mr. E.
Mr. E. stood six feet and weighed in at a healthy 280 pounds. He was in the last part of the middle stage of Alzheimer’s disease, and his family brought him to live with us.

Mr. E. was extremely moody and unpredictable. He could be charming and get along great with the other residents of the facility, but then suddenly turn angry and scary. After a few weeks, the other residents avoided him.

Alzheimer’s disease caused him to be paranoid, and he believed that everyone around him was lying and trying to trick him. For instance, if Mr. E. were told that he was in another resident’s room, he would get very angry yelling that he didn’t believe us.

One day this behavior came to an unpleasant head. A woman resident came to me and told me that Mr. E. was in her room. She had been too frightened to try and ask him to leave and rightfully so as it turned out.

Photo by Thomas Summer on Unsplash

I went into the woman’s room to discover that Mr. E. was in the bathroom. I knocked but received no answer. Then I remembered that Mr. E. had a hearing deficit, so I cracked the door enough to say in a loud, clear voice that he was in the wrong room and would he please leave when he was done.

Apparently, I had caught Mr. E. in one of his bad moods. He came crashing out of the bathroom angry and yelling. I tried to escape but was trapped because the bathroom door blocked the room door from opening. He began swinging his fists and backed me up so that one of the beds was behind me. He then knocked me down onto the bed and started to knee and beat me.

I was fortunate. The woman who had come to me asking me to remove Mr. E. from her room was witness to what was happening. She began yelling for help, and soon three other staff members came in and got him off me.

I was severely bruised and shaken but not seriously hurt.

This story may seem to be saying that Mr. E. was vicious, but that isn’t true. What this story illustrates are the horrible changes Alzheimer’s disease can make in the brains of those who live and die from it.

Mr. E.’s family was thoroughly shaken by the incident when they were told. They insisted that was not the way their daddy would act. He had always been a kind and gentle man and not known to ever raise a hand to anyone.

I knew they were correct. It was not Mr. E. who attacked me that day. It was an unseen and unwanted force in his brain called Alzheimer’s that left me bruised and beaten. Within a year Mr. E. died from complications from a broken hip. Having hip replacement surgery when you are elderly and have Alzheimer’s disease left him vulnerable to pneumonia which eventually took his life.

Photo by Matheus Ferrero on Unsplash

I’ve held the hands of family members while they sobbed over the changes in their mom or dad. I’ve also held the hands of people at the beginning of the last stages of Alzheimer’s who knew they were dying and were full of fear.

Some Final Words About Living and Dying from Alzheimer’s Disease
One last and critical thought. Alzheimer’s Disease or dementia of any kind is NOT a normal part of aging. These diseases are caused by genetic and environmental changes that infect and cause a cascade of effects that ultimately cause dementia. Although some of these triggers have been identified, much more research needs to be done to find and end the causes of these debilitating and life-shattering disorders.

If you or someone you love is showing signs of Alzheimer’s Disease or has received it as a diagnosis, it is essential to know that it is not just your loved one who needs support, but you will too.

The Alzheimer’s Association can help. They can give you information, tips and lists of organizations near you where you can get the support you need and deserve.

From PatientNextDoor Editorial Team
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