Tru here answering a question:
These can be some of the sources of fear.
- Communication: Every time i think of something i want to contribute to conversation — by the time i get to say a word edgewise, that thought is gone. Right now i REMEMBER it is rude to interrupt, but in my efforts to continue relationship I FEAR that my filter will fail, and i will be rude to others. Also fear my filter will fail and i will spill secrets. So often my reaction is frustration and anger.
- Control: Everything feels out-of-control — and especially out of “my” control.
((i think The more a person “needed” control of their environment before dementia hits, that creates stronger panic when things are out of their personal control — control has been a coping strategy to keep “sane”, and now it is gone)).
- Employment: Many workers “fear” retirement, because it means we are no longer “producing”. When a person is forced out of employment due to a “dementia” diagnosis, the anxiety is ever-so-much more intense. We lose income. Usually we lose the friendships from workplace. We fade from social structure. We face crisis.
- No Therapy or hope is given at point of diagnosis.
It feels like this is the end and we feel set adrift.
- Dependency: We WILL lose our license to drive (or have already lost it), and driving in most cultures is associated with adulthood and independence.
it FEELS like our adulthood is now in question.
Our Abilities are decreasing, and we are becoming so ** bleeping** DEPENDANT on others and on circumstance. ((And what happens when those “others” have their own plans and needs??))
- Finances: Usually, We have no income of our own; until Social Security or Retirement kick in, we have no “ownership” of funds to purchase what we might need …
or what we want to give to others. my condition of Social Security funds was that the funds must go to someone else, who will control the money.
((Our days of giving gifts as an individual –from “me”– are now gone, because it is actually someone else’s money)).
- Anticipatory Panic: We hear the bleak outlook from caregivers about what other people with dementia do in middle-and-late stages, causing caregiver burden and suffering; and we picture ourselves being the cause of that suffering, in the future.
What can we do to prevent our loved ones feeling this suffering and BURDEN?
This can be a very strong source of panic and fear, triggering thoughts of suicide.
Add possible effects of stigma, and you can see how fear is almost a very reasonable response. — With Anger as a reasonable extension of fear (adrenalin says to escape or attack).
i think THE major contributing factor can be how each individual deals with GRIEF.
if he has not yet accepted diagnosis, begun the grieving process (which often involves ANGER) and decided to find the good in life that remains … then that is probably where he is now.
Wrote about this at https://truthfulkindness.com/2017/04/21/pwd-grieve2accept-dx-purpose/ ;
Finding peers with dementia can be a big step in dealing productively with grief adjustment, and there are many groups for persons living with dementia.
at young age, he can probably still text well, so there is “Living Healthy with Early Onset”, “Just for Early Onset”, etc.
For video chat, i am very partial to https://www.dementiamentors.org/ .
Personally i suggest avoiding too much contact in caregiver groups, because the constant talk of future (later-stage) symptoms can be very discouraging. We want to help, but must keep these things in BALANCE to avoid over-exposure to anticipatory grief which is dis-Abling.
i avoid focus on things over which i have no control (like politics and finances). i use journaling (whether text or pictures) to keep perspective that not ALL days are bad days — because fear can take over when i feel like time is running out, and all the good days are gone.
With these tools, it is much easier to deal with the grief in healthy ways. Remember neither of you are alone in this.
.LINKS on Anger and Fear:
Alzheimer’s Anger by Missy at https://truthfulkindness.com/index-persons-with-dementia-pwd/missy/alzheimers-anger/ ;
Uncontrollable Fury by Harry Urban at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/uncontrollable-fury/ ;
Fear of being a burden by retired doctor David Hilfiker at https://www.agingcare.com/Articles/On-Being-a-Burden-186064.htm ;
Fear from Clinical outlook and “prognosis” by Susan Suchan at https://alzauthors.com/2017/02/14/meet-blogger-susan-suchan-this-disease-does-not-come-with-an-instruction-manual/ ;
Anger at interruption by Cindy Odell at https://ftdnoflowers.blogspot.com/2018/01/mood-swings-anger-and-frustration.html ;
Mike Belleville and Brian LeBlanc vid on anger, family, and relationships at https://youtu.be/psHl3gcnArU ;
1-hr “Dementia Chats” on Anger at https://youtu.be/7r1aD0CkgjY ;
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