Alzheimer’s disease & Dementia from a caregiver’s perspective is worse on the family than the patient.
I’m not saying it’s easy for the patient either, not by any means! Please don’t misunderstand that opening statement.
However, as the patient moves past the first initial stages of Alzheimer’s or Dementia they forget the short term memories. But the family is left to mourn the person their loved one was in more recent times.
So in this post, I want to talk about not only what Alzheimer’s & Dementia does to a person, but also how they affect the entire family. Let’s get to it then!
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Alzheimer’s vs. Dementia
Before I begin with my perspective as a caregiver of Alzheimer’s & Dementia patients, I’d like to talk more about these diseases. Let’s look at some basic facts and information.
The best way to explain the difference between the two is that Alzheimer’s is a disease, while Dementia is a syndrome. A syndrome is basically a group of symptoms that don’t actually have a definite diagnosis.
Dementia is a group of symptoms that affects mental cognitive tasks such as memory reasoning. So Dementia is actually an umbrella term that Alzheimer’s Disease can fall under.
Alzheimer’s Disease Overview
According to the Alzheimer’s Organization website, the following is an overview of Alzheimer’s Disease.
Alzheimer’s is a degenerative brain disease that is caused by complex brain changes following cell damage. It leads to dementia symptoms that gradually worsen over time. The most common early symptom of Alzheimer’s is trouble remembering new information because the disease typically impacts the part of the brain associated with learning first.
As Alzheimer’s advances, symptoms get more severe and include disorientation, confusion, and behavior changes. Eventually, speaking, swallowing and walking become difficult. There is no way to prevent, cure or even slow Alzheimer’s Disease.
Though the greatest known risk factor for Alzheimer’s is increasing age, the disease is not a normal part of aging. And though most people with Alzheimer’s are 65 and older, approximately 200,000 Americans under 65 have younger-onset Alzheimer’s disease.1
Alzheimer’s is a progressive disease that worsens over time. In its early stages, memory loss is mild, but with late-stage Alzheimer’s, individuals lose the ability to carry on a conversation and respond to their environment. Alzheimer’s is the sixth-leading cause of death in the United States. On average, a person with Alzheimer’s lives four to eight years after diagnosis but can live as long as 20 years, depending on other factors.2
Stages of Alzheimer’s Disease
Although Alzheimer’s is a progressive disease there is no determined time-frame of how long each stage will last. Each and every patient is different and will advance through each stage at their own progression.
Changes in the brain related to Alzheimer’s start long before symptoms are ever noticed. These changes can start years before family, friends or even the patient notice any sign or symptom of the disease. This stage is referred to as preclinical Alzheimer’s disease.
1. Mild Alzheimer’s disease (early stage)
During this early stage the person may still function independently, but start to feel like they are having memory lapses.
Family, friends, and those close to the person may be able to notice some changes and memory problems.
During a detailed medical interview, doctors may be able to detect problems in memory or concentration. Common difficulties include:
- Problems coming up with the right word or name
- Trouble remembering names when introduced to new people
- Challenges performing tasks in social or work settings.
- Forgetting material that one has just read
- Losing or misplacing a valuable object
- Increasing trouble with planning or organizing
2. Moderate Alzheimer’s disease (middle-stage)
Typically the Moderate (middle-stage) Alzheimer’s disease is the longest stage of the disease and can last many years. The patient will increasingly need greater levels of care during this stage.
As the disease is progressing you will start noticing more symptoms. The patient will have more difficulties performing tasks, yet may still remember great details about their life.
Also, you may notice the person with Alzheimer’s confusing words, getting frustrated or angry, or acting in unexpected ways, such as refusing to bathe. Damage to nerve cells in the brain can make it difficult to express thoughts and perform routine tasks.
At this point, symptoms will be noticeable to others and may include:
- Forgetfulness of events or about one’s own personal history
- Feeling moody or withdrawn, especially in socially or mentally challenging situations
- Being unable to recall their own address or telephone number or the high school or college from which they graduated
- Confusion about where they are or what day it is
- The need for help choosing proper clothing for the season or the occasion
- Trouble controlling bladder and bowels in some individuals
- Changes in sleep patterns, such as sleeping during the day and becoming restless at night
- An increased risk of wandering and becoming lost
- Personality and behavioral changes, including suspiciousness and delusions or compulsive, repetitive behavior like hand-wringing or tissue shredding
Severe Alzheimer’s disease (late-stage)
During this late-stage, the end-stages of Alzheimer’s Disease, dementia symptoms become severe.
At this point, individuals lose their ability to respond correctly to their environment. They can no longer carry on appropriate conversations or voice their needs and wants correctly.
Memory and cognitive skills worsen. They may still say words but cannot communicate basic needs or even pain. They now require extensive care with daily activities. At this stage, they may need:
- Need round-the-clock assistance with daily activities and personal care
- Lose awareness of recent experiences as well as of their surroundings
- Experience changes in physical abilities, including the ability to walk, sit and, eventually, swallow
- Have increasing difficulty communicating
- Become vulnerable to infections, especially pneumonia
Credits to the Alzheimer’s Organization article for the above information.
Alzheimer’s from a caregiver’s perspective
Excruciating, exhausting, frustrating, painful, and frightening. These are all words that instantly come to mind when I think of how people must feel while taking care of a loved one with Alzheimer’s Disease.
The patient is your family and you love them dearly. Of course, you want the best for them and personally taking care of them is the best care possible! Right?
Well, that depends… As long as you are also able to take care of yourself AND your loved one. You cannot be any good to your loved one if you exhaust yourself and ruin your own health too. It’s ok to ask for help!
A person once described watching a loved one with Alzheimer’s to me like this, she said: “It’s like they have already died, it’s like I’m in that limbo, you know the few days between when someone dies and the day of the funeral.”
As a caregiver of Alzheimer’s patients
During the introduction of this post, I mentioned I am a retired nurse that worked with Alzheimer’s and Dementia patients.
My 35+ year career began with me working as an aide in a state-owned mental facility. This facility housed over 1200 individuals at that time. They ranged from completely bedridden to ambulatory and able to master many tasks. However, none of them had IQs over 65. It was challenging, but early in my life, I found my passion.
The compassion I discovered within myself for these patients lead to a passion for helping mental health patients. I continued working there as I set out to earn my nursing degree.
At the latter end of my nursing career, I was fortunate and blessed to work in a private-owned nursing facility for Alzheimer’s and Dementia patients. During my time there I learned that God had directed me there through each and every step of my life.
My Mess Becomes a Message
Let me say one thing for sure… my life has never been neat and tidy. I have never been able to keep all my ducks in a row! If you’ve read any of my early posts at the beginning of this blog then you know my life has been a hot mess at times.
However, if I can say anything in this post that might help someone that is now a caregiver of an Alzheimer’s or Dementia patient then my mess and this blog are all worth it to me.
When you are faced with caring for a loved one with Alzheimer’s, these are a few of my very basic tips:
- Don’t try to do it all yourself
- Don’t be afraid to ask for help
- Do not be afraid or ashamed to put them in a facility– at some point, they will need around the clock care. Accept the fact that it really is best for them.
- Do not argue with them or try and force them to remember things
- Get to know the staff that helps care for your loved one.
- Take care of yourself. Self-love and Self-care are very important.
As a Nurse working with Alzheimer’s Patients
A caregiver’s perspective of Alzheimer’s Disease and Dementia patients can actually come from different angles. The perspective of a family member taking care of an Alzheimer’s patient will be different than mine as a nurse.
Let’s expand further on that thought. Even the perspective of an aide or sitter that helps with a patient will be different than my nursing opinions or the family members’ opinions and perspectives.
With all that being said, please keep in mind that the following information is based on my personal opinions, experiences, and observations from my years of working with Alzheimer’s and dementia patients.
Our care was not limited to just the patients
Considering the places/facilities that I worked for throughout my career I consider myself privileged and beyond blessed to have worked at my final job before retiring.
Out of respect of privacy for my past patients and their families I will not use the actual name of the facility, the location or any real names of patients or family members. For the remaineder of the post I will refer to the facility as The Alz Care. Any patient and/or family names I use for ease of writing will be fictious.
The Alz Care was what I considered “cream of the crop” as far as long-term care facilities go. The building was designed and built specifically for Alzheimer’s and Dementia patients.
There were four “units” or wings to the building connected by one long hallway.
Each unit was secured by locked doors that staff and family members entered with a code. Alzheimer’s patients tend to wander around a lot and with poor memory, they can easily become lost, even wander into streets and traffic. The locked units permitted us to allow the patients to wander around freely without leaving the large secured units.
Four units… one for each of the three stages of Alzheimer’s, plus one extra which was the behavior unit. Some patients have behaviors caused by the disease. Some can even become combative. This was “my unit”! I started out on this unit when the facility first opened. I loved it there and loved all my patients!
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Their families needed TLC too!
The first thing I realized as I started working at The Alz Care was that the family members of our patients needed care also. Not actual medical/nursing care from me or the other staff, no they needed TLC from us.
Each time we admitted a new patient and met the family members my first impression was that the spouse and/or adult children of this patient simply had the frozen “deer in the headlights” look. There is no other way to describe it.
So my awesome group of aides and I set out on our mission. With each new patient, we not only welcomed and made our patients as comfortable as possible, but we began getting as many details from the family as possible too. It became our mission to make our patients’ families feel comfortable and at home there too.
This place was not going to just become the patients’ new home, but we wanted their family to feel at ease with spending as much time as they wanted to there also. The families needed to feel assured they were making the right decision for their loved one.
They were not only scared but they were worn out from trying to care for the patient at home. They needed a break and they needed to trust us. We needed to become part of the family.
Why It’s Difficult to Care For a Family Member with Alzheimer’s
One thing I quickly realized was why it was so difficult for family members dealing with their loved ones progressing through Alzheimer’s Disease.
Alzheimer’s patients lose short-term memory, so they start forgetting their adult children. They may not recognize their spouses because in their minds they remember their spouse as they were 30, 40 or even 50 years ago.
But as a nurse and caretakers in a facility, we are just meeting your loved one. We only know them as they are now, at the moment we meet them after Alzheimer’s has already taken away the person the family knew a year before.
Living In The Moment
Living in the moment, whatever that moment maybe is much easier for medical staff. We aren’t mourning the spouse or parent that Alzheimer’s stole from us.
We meet the patient as they are, with all their new little quirks and personality that the disease has given them.
There were family members that were so shocked and sometimes embarrassed at things their loved ones would do.
For example, we once had a preacher’s wife that her family was very shocked and upset because “mother was cursing, asking for cigarettes and acting provocatively” Another family was puzzled at how their mother was always dancing, they said she had never danced in her life!
We had noticed that as Alzheimer’s progressed and started changing their personalities the patient would start doing things exactly opposite of how their true personalities had always been. The staff helped the families learn how to laugh with these personality traits and just enjoy this new side of their loved ones.
Do you remember the movie Groundhog Day? Remember the comedy came out in the early 1990’s starring Bill Murry as a weatherman that got caught in a time loop and he was reliving the same day over and over.
During my time working at The Alz Care, I often felt as if I was in that movie! Every day felt like I could repeat it word for word from each patient as if it were a script from a movie.
Sadly during the mid-stage of Alzheimer’s a lot of patients get caught in a loop. They tend to get fixated on one memory or one particular time in their life.
Perhaps it is a very significant time in their life. A major event such as meeting the love of their life, their wedding or even a traumatic event like losing someone or being in a war.
However, when they get stuck in these loops the best thing you can do is just play along. Don’t try to convince them that the event already happened and it’s over. They are not remembering the time that the event passed. In their minds, they are truly in the midst of the event. Role-play if you have to, but just go along and let them live it out in their mind. If it’s a sad event then console them and help them move through it as best you can.
I do not want to make this post too long, so in conclusion, I would like to say that I am planning a follow-up post to this one.
Alzheimer’s Disease and Dementia deserve way more awareness! While there is tons of information out there, I also know there are thousands of caregivers with great tips and advice also!
It’s Your Turn
Let me know about your experiences with Alzheimer’s and/or Dementia. Have you had a loved one with this disease? What is your perspective as a caregiver of an Alzheimer’s or Dementia patient?
I am considering possibly doing a series on this topic, maybe with more information and experiences from my time as a nurse. What do you think? As a reader would this be something interesting?
Let me know what YOU think!
Leave me a comment. I love hearing from my readers! Please leave your opinion on this topic and about a possible series. If you are someone with experience in this field, hit this Contact Me link and shoot me an email. I’d love to chat with you!