Written by Amanda Thornton, MSN, BSN, RN, CIC, VA-BC
From famous Disney characters to movies such as the Notebook, Society’s idea of what dementia really looks like or feels like has been shaped by these mainstream references. But what does experiencing dementia REALLY feel like? This is difficult to gauge or measure, especially in the later stages of dementia as these people really cannot tell you, for they have lost the ability to communicate. However, there are a lot of descriptions of what it is from people who still have the ability to describe their personal journey. This blog explores some first-hand accounts of the progression of dementia, what it feels like, from the “inside”.
Just as all of us are unique, so too each person’s dementia story will be unique, as will how they perceive it. I was curious to see how my mom would answer this question, so I just asked her straight out “Mom, what is it like to experience dementia? What does it feel like? Can you describe it for me?”. Her response was interesting. She said to me “Well, for the most part it’s kind of like I am sitting outside on a sunny day- it’s a nice day, and the breeze is blowing, the sun is out and shining on my face and I am sitting in a nice comfortable chair, the sky is blue and the clouds are white and I know all this to be true. Then, I look around and I say to myself, but WHY am I sitting in this chair and WHERE exactly am I? It’s not scary, because the word still looks the same and feels the same to me, gravity still anchors me to the ground, but I cannot tell you anymore the reason behind the “why”.” For her, some days are better than others, as many people with dementia will tell you. Dementia is often described as a ‘fog’ that rolls in suddenly and without warning simply bogs you down, and does not allow any clarity of the situation you are currently in. For some, this can be very anxiety provoking, especially as the disease progresses, and these instances get more and more frequent.
It is important if you are in the early stages of an onset of dementia to know some of the warning signs. The CDC describes them as follows:
1. Memory loss that disrupts daily life: forgetting events, repeating yourself or relying on more aids to help you remember (like sticky notes or reminders).
2. Challenges in planning or solving problems: having trouble paying bills or cooking recipes you have used for years.
3. Difficulty completing familiar tasks at home, at work, or at leisure: having problems with cooking, driving places, using a cell phone, or shopping.
4. Confusion with time or place: having trouble understanding an event that is happening later, or losing track of dates.
5. Trouble understanding visual images and spatial relations: having more difficulty with balance or judging distance, tripping over things at home, or spilling or dropping things more often.
6. New problems with words in speaking or writing: having trouble following or joining a conversation or struggling to find a word you are looking for (saying “that thing on your wrist that tells time” instead of “watch”).
7. Misplacing things and losing the ability to retrace steps: placing car keys in the washer or dryer or not being able to retrace steps to find something.
8. Decreased or poor judgment: being a victim of a scam, not managing money well, paying less attention to hygiene, or having trouble taking care of a pet.
9. Withdrawal from work or social activities: not wanting to go to church or other activities as you usually do, not being able to follow football games or keep up with what’s happening.
10. Changes in mood and personality: getting easily upset in common situations or being fearful or suspicious.
For our mom, one of the very earliest warning signs for her was a difficulty in writing. She would misspell words, not be able to find the words she wanted, or even misspell her own last name. She also began forgetting to call me and my older sister by our married last names and instead would write our maiden names on things like cards or checks she would write to us. For her this was a very big deal, because she was a journalist by trade, and words were her bread and butter. For her, this was a huge red flag and a very difficult pill to swallow. Loosing her ability to communicate eloquently and fluently through the written word was a devastating loss for her indeed. As she progressed she began to not be able to do tasks with sequences in them such as cooking, bathing or driving. She would leave the stove on and a pan burning which was scary indeed! Interestingly she still is very capable of doing things like cleaning, folding laundry, feeding the dogs (although they get fed more often and are fat and sassy now). and even posting on Facebook on her cell phone (although she will post the same thing over and over again). She also can play her auto-harp beautifully and sing all sorts of songs she remembers.
For each person, their journey will be unique and different depending on their strengths, weaknesses, likes and dislikes.
For a very “first hand” experience of what it is like to have dementia, watch the following two videos- they are worth watching!
1. You tube: https://www.youtube.com/watch?v=LL_Gq7Shc-Y
2. You tube: https://www.youtube.com/watch?v=Erjzl1WL8yQ&t=400s
References:
Comments