What is Dementia Like for My Parent?
It’s heartbreaking to experience the gradual loss of a parent to dementia. In fact, it’s one of the most difficult situations an adult child will ever have to face, especially when you must juggle your parent’s care with the needs of your own children, the needs of your spouse, the demands of a career and all the other responsibilities you have in your life. Dementia forces you to stand by and watch as it slowly robs your parent and you of the relationship you once shared.
Your roles have been reversed. Your parent has been there to provide the care and give you the assurances you needed, but now, you have become the caregiver. Now, they need you to provide these things to them. As difficult and painful as the situation is for you, imagine how much more difficult it must be for them as they helplessly watch the life they once knew slowly slipping away.
What is Dementia Like for My Parent?
How a person with dementia feels cannot be fully defined, because each person’s experience is impacted by a myriad of elements including:
- The kind of dementia – each dementia affects a person differently depending upon which parts of the brain are affected and suffer deterioration. Some dementias, such as Lewy body dementia, can also cause physical problems. Some dementias don’t have memory issues as intensely as Alzheimer’s does or as early in the disease process as Alzheimer’s.
- Their general attitude and outlook on life (is the cup half empty or half full), often impacted by their upbringing
- Their personality
- Their attitude about the dementia
- Their age
Some of these factors determine their outlook and attitude concerning the life they live, with or without the disease. Nevertheless, this attitude affects how they face a dementia diagnosis. For example, in statements shared by Michael Fitzjohn (see below), his humor shines through; something that certainly isn’t true for all who have dementia.
Let’s look at some common symptoms of dementia. As we look at these symptoms, we must remember that dementia manifests differently for each person. Dementia can affect many different body systems. Some symptoms are experienced earlier than others. Every person will not have every symptom.
Cognitive symptoms may include memory loss, mental confusion, mental decline, disorientation, aphasia (inability to speak or understand speech), sundowning (agitation and confusion in the evening hours), an inability to name or even recognize common items and confabulation (making things up to try and make sense of the memory gaps).
Behavior symptoms may include personality changes, lack of restraint, wandering and getting lost, restlessness and irritability.
Common mood symptoms may include anxiety, nervousness, mood swings and loneliness.
Psychological symptoms may include hallucinations, delusions, paranoia and depression.
Muscular symptoms may include an inability to combine muscle movements or an unsteady gait
Other common symptoms may include frequent falls, jumbled speech and sleep difficulties. These are just the common symptoms. There are many other symptoms that can and will affect individuals as they live their lives with dementia.
How People With Dementia Describe It To Be
With the advent of the internet, information covering a wide variety of topics is now available. More and more people are willing to share their experiences, including those with various forms of dementia. These individuals provide valuable information for someone who truly wants to know what it feels like to have dementia. After all, who better able to answer that question than someone who is walking out or has walked through life with dementia?
The Neuroscientist Who Lost Her Mind
In an amazing article, neuroscientist Dr. Barbara Lipska shares her experiences with dementia. After she developed brain tumors, the treatment caused her brain to swell. The pressure on the prefrontal cortex caused symptoms that mimicked those of the dementia patients she had studied in her lab.
Because of problems with memory and language difficulties, individuals with dementia are often unable to express what they are feeling. Dr. Lipska’s account is incredible because she can share exactly what it’s like to live with dementia, having the clear hindsight of someone who has since recovered and is able now to describe her experiences.
Describing the initial stage of her illness, she says, “It was difficult, at first, to pinpoint the changes in my behavior, because they came on slowly. I didn’t suddenly become someone else. Rather, some of my normal traits and behaviors became exaggerated and distorted, as if I were turning into a caricature of myself.”
Even though Dr. Lipska is well versed in the symptoms of dementia and what they mean, she didn’t recognize them as they happened to her. She shares that it felt like the world around her had changed rather than her perception of things. Totally oblivious to the ramifications of her diagnosis, she was frustrated with everyone else because they were causing such a fuss while she remained calm and assured. The part of her brain that was supposed to alert her to the fact that something was wrong had been affected, preventing her from ‘connecting the dots.’ She describes this experience saying, “Strangely, I wasn’t worried … I was losing my grasp on reality. I felt certain that there was nothing wrong with my brain. This wasn’t just wishful thinking, or extreme denial; my worldview made perfect sense to me … [I was] not able to see that my own [brain] was crashing.” The fact that she was not afraid, although in extreme danger, frightens her now that she is no longer in harm’s way. She shares, “I lost insight. I lost awareness that I was not behaving normally …”
She was easily irritated, impatient and impulsive. She shares, “I had no time for anything – not even for the things that I really enjoyed, like talking to my children and my sister on the telephone. I would cut them off midsentence, running somewhere to do something of great importance, though what exactly, I couldn’t say. I became rude and snapped at anyone who threatened to distract me.” She did not have the focus needed to nurture relationships with those around her.
Dr. Lipska’s first symptom that alerted her to the fact that she had a problem was when her hand disappeared in front of her face. Her first thought was ‘brain tumor’ and, being the director of the human brain bank at the National Institute of Mental Health, she knew all too well what that meant for her and her future. In addition to visual hallucinations, such as the loss of her hand, she struggled to recognize things and places with which she was very familiar. She often found herself lost in her own neighborhood and other familiar places. Because of her distorted awareness, rather than accepting these difficulties as coming from within her own thought processes, she wondered why others had moved or changed things. She began to mistrust those around her, believing they had moved things around in a conspiracy against her. Rather than feeling fear, she was overwhelmed with feelings of irritation. Explaining some of the confusion she felt, Dr. Lipska shares, “I would read a paragraph and forget it instantly. I got lost driving home from work on a route I had taken for decades. I went running in the woods outside my house, barely dressed.”
Dr. Lipska’s difficulty in anticipating her body’s needs added to her irritability. She no longer experienced a gradual build-up towards normal body needs and functions such as fatigue, hunger or even the need to urinate. Instead, these urges made furious demands without warning, giving her no time to plan ahead and making it impossible to focus on anything else.
Dr. Lipska sums it up saying, “The underlying causes of mental illness are rarely as clear as metastatic brain cancer. And yet I felt I understood for the first time what many of the patients I study go through – the fear and confusion of living in a world that doesn’t make sense; a world in which the past is forgotten, and the future is utterly unpredictable.”
If you want to read more about Dr. Lipska’s journey through dementia and back, she has chronicled her experiences in her novel, The Neuroscientist Who Lost Her Mind.
Facing Dementia with Humor and Dignity
Another individual, Michael Fitzjohn, answered this question on Quora, “What does dementia feel like?” He begins with a simple statement, “I have dementia.” It’s almost like you can hear a pin drop before he continues to describe his experience with the disease through various one or two sentence blurbs. He continues, “I’m headed towards oblivion one moment and can think as clearly as anyone the next moment. Dementia feels scary one moment and just a word the next.”
In one of his blurbs, he humorously describes the denial that someone who is diagnosed but still retains a lot of their mental capacity may have, “I plan to prove the doctor’s diagnosis wrong. I’m just a silly old man who lost his car keys.”
In another statement, he demonstrates his humor as he talks about his inability to accomplish simple tasks. He says, “Doctors give me pictures to copy. I have no idea how to [draw them]. Doctors give me words to remember. I forget most words a second after I’m told. I am sick of drawing clocks. I had to think how to make the clock say 11:10. I don’t think I impressed the doctor.”
He went on to share quite a few other profound and telling statements you can read here.
In the same Quora posting, Susan Morse, who is 49 and has had dementia for 10 years, shares some of her experiences. Ms. Morse has Lewy body dementia (LBD) and reveals this about the disease, “LBD causes extensive psychiatric issues, including uncontrolled and frequently violent outbursts …” She goes on to talk about hallucinations, one of the hallmarks of LBD. Then she shares her experiences with another symptom of the disease – paranoia, “I experience the unmistakable feeling that somebody is walking behind me and approaching me.”
Other common symptoms associated specifically with LBD that she mentions include:
- Hallucinations that are vibrantly realistic and may be visual, auditory, olfactory and/or tactile in nature
- Capgras syndrome causing a person to believe that those close to him/her have been replaced by imposters. Even people close to them, like a spouse, are often considered imposters and a source of danger. This causes those with LBD to feel isolated and alone, with no one available to provide comfort.
- Difficulties with problem-solving skills
- Lack of attention span which leads to housefires, flooding, failure to take medication and “a ridiculous amount of time accomplishing the smallest task”
She said she feels a disconnect with others, as do many others with dementia. “All these issues lead to a disconnection from other people – that has been, for me, the worst part of dementia.” She further adds, “LBD patients experience crushing depression and anxiety.”
Despite having developed dementia at a fairly young age, Ms. Morse’s attitude remains strong. She shares with those who want to show her pity that their pity is misplaced. “… I don’t fear death … I’m careful to remind people that there is no guarantee they will outlive me. Life … could take any of us at any moment.”
Obviously, since these individuals can share their feelings so eloquently, they are still early in the disease process or they have a dementia that hasn’t yet affected their ability to communicate. In reading some of the comments on Mr. Fitzjohn’s posting, you’ll notice that people have been following his posts and disease progression for some time.
Metabolic Dementia: There and Back
Another individual on Quora answered the question, “What is it like to suffer from dementia?” She too developed dementia at a very early age (in her 30s) – metabolic dementia. She chooses to remain anonymous because of the stigma surrounding dementia. She has since recovered, which makes it possible to clearly reveal how she felt at the time.
Her first paragraph describing what it feels like is quite telling. She relates, “[It’s] like wading through molasses all the time. All your thoughts are slowed down, and many kinds of thinking are not available to you. You don’t really remember what you’ve lost, but you know something is not right.”
She continued to work although it’s apparent from what she shared that she had difficulties, proving that many people can continue to work and function, albeit at a reduced capacity, even with dementia.
When the dementia was at its worst, she had aphasia (the loss of ability to understand or express speech). She shared that it was difficult to remember words, or even what the words signified. She also suffered from echolalia. Even though she recognized that she was repeating the last few words she heard spoken to her, she was powerless to stop herself from doing it.
As she experienced things during this period in her life, they felt as if they were happening to someone else and she was watching it all from a distance. It was hard for her to care about what was happening.
She too felt isolated and alone, sharing that she had lost most of her friends and was very lonely. She had to quit her job. Depression and despair set in and she felt that if things got any worse, she was better off dead.
Luckily, once the underlying cause of the dementia was treated, her recovery was almost full at 95%. She still struggles with certain issues, especially later in the day. She is also concerned that her brain may have suffered permanent injury and that as she gets older because this has happened to her, she may be prone to getting dementia again.
Somebody I Used to Know
Wendy Mitchell was diagnosed with early-onset Alzheimer’s in 2014 at the age of 58. Since then, she has started a blog, Which Me Am I Today, where she documents her journey one day at a time, providing a detailed account of how dementia affects her life on a daily basis. She has good days and bad. Every day is different, and she shares it all with her readers.
She has also written a book, Somebody I Used to Know, capturing her experience with dementia, making it possible to learn more about what it’s like to live with dementia. The book is described as philosophical, insightful, profoundly moving and ultimately full of hope. It’s a heart-rending tribute to the woman she once was, and a brave affirmation of the woman dementia has seen her become.
A Stranger to Myself
In her online article, Dementia and Aging: The Diary of a Sufferer of Microvascular Disease, Gerda Saunders eloquently describes her descent into dementia. In this article, she shared that early in the disease process she had started to “feel like an alien of sorts, a stranger even to myself.”
Waking to Dementia
Another person who has Alzheimer’s, someone who once worked in Emergency Medical Services, answers the question by comparing it to the use of a drug they frequently dispensed professionally. They compared having dementia to taking the drug midazolam (Versed), a drug that inhibits your ability to make short-term memories. They wanted us to imagine someone who had been given the drug and then waking up in a building to which they had never been, filled with furniture and items they didn’t recognize. They continued, “Give them five minutes alone in this unfamiliar place, and then, one by one, have complete strangers enter the room and talk to the person as if they have known each other their entire lives. Have these strangers talk to the person as if one of them is their daughter, their spouse and their pastor. Have these strangers express concern for the person’s loss and assurances that everything is going to be alright.” Then, as the person tries to make sense of what is happening, everyone exits the room, leaving them entirely alone. This person explained that this doesn’t even begin to describe what a dementia patient goes through … but it’s far more accurate than many of the portrayals we run across.
Dementia from the Inside
The Social Care Institute for Excellence has created a video depicting incidents and memories people with dementia have shared. This video portrays an average day through the eyes of a person with dementia. The narrator, who has dementia herself, details her confusion and thought processes. The video, Dementia from the Inside, gives you a brief glimpse into the world a dementia patient faces daily.
Explaining How it Feels to Children
If you have children asking this question, the Alzheimer’s Research UK offers an explanation on their site that makes it easy to help children understand. It’s very basic, but it offers a simple overview that won’t overwhelm and frighten a child should you have one asking how it feels to have dementia. The site covers other dementia-related topics as well, all with answers children can easily understand.
When Memory Care Is Needed
Although each person’s dementia experience will be different, these examples, shared by dementia patients, should give you a better idea of how your parent is feeling and what they may be going through. Armed with this information, hopefully, it will be easier to help them deal with the issues they face. It’s hard to know that you’re slowly losing yourself to a disease that has no cure. Then when you no longer understand that, it’s hard to try and make sense out of life and all these strange people that have invaded it. When it gets too difficult, we’re here for you.
If you are looking for an exceptional place to receive dementia care, The Villages of Windcrest, located in Fredericksburg, TX, offers specialized memory care services. We understand that each person’s life experiences and needs are unique; therefore, our programs are adapted specifically to the needs and wants of each individual. After assessing each resident’s interests and abilities, we build a personalized program to create moments of joy in their life. Contact us today to see how we truly honor each resident’s legacy and passions through our Valeo™ Signature Programs.