Feeling Left Out with Dementia Symptoms

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Tru here.  I was asked to think about what phrases and actions leave Persons With Dementia symptoms feeling left out.
This must be prefaced by reminder that there are a lot of similarities between experiences and perspectives of different Persons With Dementia — but there are also a lot of differences.  Even the same exact severity of the same exact symptoms may bring different feelings in different persons due to different personal history and perspective.  At this time I am only addressing my own individual perspective, as a person living with dementia symptoms; my current clinical diagnosis is “Mild” cognitive impairment (and specialist said must keep close eye on me because I already have quite a few Lewy Body Dementia symptoms).

  • UPDATE 2015-Dec: I neglected to check dictionary definitions before making this posting.  Sorry; poor preparation.  I have left most of entry below these notations as it was originally posted but … after further research I have come to these conclusions:
  • Lack of shared meaning for vocabulary facilitates mis-understandings instead of promoting unity.
  • I am still offended by plenty of terms, but realize that most often it is due to my own narrow definition of those terms; hard time getting past some aspects for the term “care”; In my mind “care” is still limited to consideration and kindness.  To have someone else identified as my “care-giver” implies to me that I am no longer able to give consideration and kindness.  Even tho I am not alone in this mis-perception, I need to realize that it is my own problem – due to my own narrow definition of the term.  Strongly objected to term “victim” in this context — until I looked it up in dictionary.  But again I had a narrowed definition which was corrected by the dictionary; second point in Merriam-Webster is “an individual injured or killed (as by disease, violence, or disaster)”.  I suspect a dementia brain is an injured brain.  oh well.  I feel that it is my problem to deal with my own misperceptions of language, not all of humanity’s responsibility to comply with my own narrow definitions.  I also have problems with becoming a “consumer” and a “user” but recognize that when used as transitive verb (with subject included) they can actually be quite appropriate.  It is much easier for me to get past the sting tho if grammatical subject is so close as to be hyphenated with the verbs (ie service-user or service-consumer).

…   ***   …   ***   …

PHRASES

Oftentimes the negative phrases create resistance to acknowledge dementia within self or to share with others,
because of embarrassment and belittlement.

 Phrases that exaggerate my symptoms:

  •  “care-giver”vs “care-partner” (Please see update at top of blog entry); (as if I no longer have the ability to give gift of “care”; instead now I will always be the receiver?);   Actually, both partners need to cooperate in order for efforts to be successful, so instead of “care-giver”, try “care-partner” or “care-assistant”.
  •  “service-user” (Please see update at top of blog entry); (as if I no longer have the ability to be of “service” to others)  In reality each of us receives and gives to others.  Could be “Person With Dementia”, or “Dementia patient” or “client”.
  •  “consumer”; (Please see update at top of blog entry); (am I only an absorber — consuming the efforts of others?)  As above, each of us receives and gives.
  •  “demented”, (I personally feel this term has been too distorted for use) Instead please use “Person With Dementia”.
  •  “Victim”; (Please see update at top of blog entry)  Dementia does not victimize a person.  Poor levels of care, elder abuse, and disrespect victimizes a person.  I have spent years avoiding a “victim mentality”.  There is no alternate language for “victim”.  Just don’t use it.
  •  “Empty shell”, “Fading away”, “Not all there”, etc (No alternatives = discard these demeaning terms !!!)

Phrases that minimize (invalidate) my symptoms:
(These are usually said in efforts to make me feel LESS alone, but they have the opposite effect because folks do not notice the difference in frequency or severity.)

  •  “I often forget where things are too.”
  •  “I can’t find my words either … but we are just getting older.”
  • “You don’t (look/sound/write) like you have dementia.”  The cognitive swiss-cheese of each patient is different.  Just because there are huge holes from missing cognitive abilities does not prevent the remaining cheese (abilities) from having good nutrients, texture, and taste.  My reading comprehension is down to fourth grade, and yet writing is mostly intact.  Instead try “You are looking well today” or “You sound vibrant”.

Phrases that ignore my symptoms: (often because speaker has not invested time/energy in discovering what to expect)

  •  “Please leave your name, phone number, date of birth, brief description for your call, along with the best time to call … after the beep”  Personally, I am only able to leave my name and number; with all the extra directions I will probably get flustered and forget to leave my phone number
  •  “Just take this home and read it”; Will I understand it? Will I remember what to do with the information?  … But be assured I will probably lose the paper.
  •  “But this was important so of course you remember when __.”  Just because something is/was important doesn’t mean that I am more likely to retain memory of it.  My dementia doesn’t seem to work like that.
  •  “Can you introduce your friend?”  I may not remember if I have already introduced them, and probably don’t remember their name.  So step up, reach out your hand, and introduce yourself.
  • Instead consider that an ever-increasing percentage of people have symptoms of dementia.  Please invest the time and energy to find out reasonable expectations.

Phrases that minimize (or ignore) my life-expectations:

  •  Instead of “I think you are getting better” try, “It seems today is a good day.”
  •  “We will come visit next year instead.”  — In past 2yrs I lost a lot of abilities to have people around …  so what will another year bring in my ability to handle noise and moving bodies?  Visit As Soon As Possible (and as often as possible) because with some people (like my grandmother) those frequent visits later made all the difference in the world.
  • “You can always have another try at it.”  Depending on how often this event occurs, this may have been the last time I will have the abilities to attempt the challenge.  There is not always a “next time”.  Instead say “You gave it your best efforts.”
  •   “It will be okay.”  — in whose book?  How is this “okay”?  Instead try “I am not angry”, “we are here for you”, “this is a hard time for all of us, but we love you”  … and remember that body language is often a much bigger deal for us than the words that come out of your mouth.  Touch a hand or shoulder  — or simply sit quietly nearby.

ACTIONS

Actions that exaggerate my symptoms:

  •  Ignoring my words and only listening to my partner’s words.  Extend courtesy of talking to me directly, slowly, and pausing between phrases and sentences.  Take the time to listen and evaluate what I have to say.
  •  Assuming that since I forget things, most anything that I DO remember is incorrect.  (Again apply the cognitive swiss-cheese concept listed above.)  Please keep in mind that a different recollection of what happened is not necessarily wrong.  — It is just different.
  •  Not investigating the possibility that this was actual bugs instead of one of my hallucinations.  Take the time to listen, evaluate and investigate when I ask, “Are those bugs?”, “Is there music in the attic?”, “Someone is talking in the kitchen,” or “I smell something hot and smoldering.”

Actions that ignore my symptoms:

  •  Ignoring my efforts to interrupt. — by the time there is a break in conversation I will have forgotten.  So allow me to interrupt — before I forget what I wanted to say.
  •  Repeating a question when I told you that I do not have ability to answer it.
  •  Continue explanation when I told you it is not working and I am getting more confused.
  • Continuing to talk fast, without pause between sentences, after I asked you to slow down.

Actions that exaggerate my “different-ness” or “alone-ness“:

  • Playing the quiz-game of “Who can remember”.  But if you talk about the events and reminisce, it might trigger memories.
  • Spending ALL the time talking about activities that I crave … but have no hope of ever sharing.
  • Assuming that if I cannot remember your name then I do not consider you important in my life.  Five of our closest friends were here day before yesterday, but I could not retrieve several names.  So please remember that name and person are not the same thing.  Allow me the work-around of saying that you are very important to me and my day would lose value without you in it, but I still cant remember your name.

All of these situations involve showing respect, embracing who the person is, and meeting them at their varied ability levels (because some aspects of abilities are still very high, and some quite low).  If you have contributory thoughts, then please leave them as comment.  Thank you.


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9 thoughts on “Feeling Left Out with Dementia Symptoms

  1. Tru – You did an incredible job of pinpointing the words and behaviors people can show that puts additional stress on our already stressed life. But, not only did you show the problems you offered solutions. I suggest you post this on one of the caregiver support groups. It could really help a lot of people if they followed your suggestions.

    Liked by 1 person

    • Paulan, my dear friend: Unfortunately my experience of response at caregiver support groups is really negative. Unfortunately it has usually been a complete waste of time — and my time and energy are usually pretty much used up. I think mostly they figure they know everything they need to know, so why take the time to read something written by those with dementia symptoms? — Hopefully your own experience will be better. — Tru

      Like

  2. I really appreciate you sharing your experiences and feelings. My mother didn’t want to talk about it…ever.
    I have learned to listen carefully and give her time to talk. She has a much harder time now, but I still hold her hand and listen. I try to give my undivided attention when ever I’m with her.
    When I’m there at a meal time, I won’t let them take her plate until (I feel) She’s done.
    Most are patient, but sometimes kitchen staff isn’t as patient.
    Again, thank you. You’ve been so, so helpful. ❤

    Liked by 1 person

  3. Pingback: Dementia “Suffering” Terminology -Part 2 | Truthful Loving Kindness

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