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how to help CGvrs learn to help us without offending?
alz+
Posted: Saturday, July 18, 2015 8:21 AM
Joined: 9/12/2013
Posts: 3608


I don't know how I got myself back at CGvr boards - related to the contented dementia books I guess - but the blow back was tempered.

Still it comes across as blame or scolding them. If a spouse or parent or friend USED TO BE easy going and people were the people were loving each other, but the dementia anxiety changes that person's personality...they naturally try to get us to be like we were.

But we can not change back to who we once were and never will.

The heart break behind the anxiety and fighting and despair falls to both people. Each is grieving, each is overwhelmed. Help has been available in other countries and could be here for us. The programs are in place, the learning curve has been done by others.

We have to do what we can to bring understanding that learning about the How and Why dementia changes our brains will bring peace and harmony to the entire household, and to ask organizations already doing so much so skillfully to find a cure to also provide our nation with education and training and physical assistance, I think.

That is what I decided my 5 minute talk will be on in September. We are not against each other but what is currently happening is based on false and faulty reasoning as the understanding of dementia has not yet come to our medical providers or the places one can turn for help.

This really got to me and I woke up edgy and disgruntled. My husband looks sad since we have had months of best happiness in years. He is probably worried it is going to go backwards. breaks my heart.

I want to thank Michael Ellenbogen for his passionate efforts to find peace for himself and others. All of us try every day to bring each other peace and these message boards are a gift to all of us - let us use it to make the world a better place.

any suggestions on how to better convey the message of unity between CGvrs and people with dementia?


llee08032
Posted: Saturday, July 18, 2015 9:24 AM
Joined: 5/20/2014
Posts: 4408


I think about this also and I don't want my family to get caught up in victimology around MY diagnosis! What impact does the dynamics of victimology have on the PWD? Will I feel victimized or will I feel like a hostage? How could I possibly feel well about myself in the present under such circumstances? Would I try to hide or deny my symptoms so as not to disappoint my loved ones? And would hiding be manifested by seemingly shutting down? Not interacting? Isolating? Being angry? Perhaps in my deteriorating brain, I would process my family's grief and sadness like a child who blames themselves for their parents' divorce and feel like it's my fault? Thinking about this brings me pain... I'm not speaking out of malice or to intentionally hurt feelings or step on toes. I'm spilling my guts about both my fears for my family and myself! Victimology is damaging to all!

  1. The lifestyle/exposure theory is a model of victimology that posits that the likelihood an individual will suffer a personal victimization depends heavily upon the concept of life style.


llee08032
Posted: Saturday, July 18, 2015 9:51 AM
Joined: 5/20/2014
Posts: 4408


I'm not speaking about victimology as it refers to crime victims. I'm speaking about the victimology surrounding dementia where everyone involved in a PWD life seemingly becomes the victim or hostage to the PWD. Why is this disease the only disease with such dynamics? Why is it that a person with cancer is seen as the victim of cancer, the sick person and a person with dementia is seemingly seen as the perpetrator in a sense? The one who wreaks havoc, makes life hell for others, turns them into victims. Why are the tables turned? Why does the family have to suffer as much or more than the sick person? Does everyone involved including the PWD have a choice in choosing to be a victim or choosing not to be a victim? I have some experience at being a victim in my younger years (an innocent victim of crime more than once) and it was the most horrid experience and feeling. It eats and eats at you! It is all consuming!
Mimi S.
Posted: Saturday, July 18, 2015 9:54 AM
Joined: 11/29/2011
Posts: 7027


The other factor to be remembered is that most caregivers are not caring for the folks in Early Stage. Those folks prefer the term care partners. We can still reason somewhat and still have a bit of memory.

As part of my training as a Peer Volunteer, I took the alz-essentials caregiving course. Although designed mostly for institutions, I think it would be useful for individual caregivers. I feel Teepa Snow's videos to be on-target. And, of course, I'm always pushing Naomi Feil's method.

One of my AD friends calls his wife his social secretary, since that is basically her role. He still is an excellent driver . (I've ridden with him), can have a great conversation, but needs reminders about appointment and pill taking.

Perhaps a major factor is adjusting one's caregiving as the person progresses with the disease.

alz+
Posted: Saturday, July 18, 2015 10:04 AM
Joined: 9/12/2013
Posts: 3608


Great discussion.

The Validation Method seemed to be based on a person working out past injuries to soul and psyche. The environmental (so to speak) methods of care quickly change "problem behaviors" without rehashing unresolved episodes of abuse or neglect.

All these methods, Teepa Snow, VM, contented dementia, Allen Power's environmental support are all helpful.


Llee - I think you have tapped a big vein of distress for many of us. To either become a hostage or a victim, many of us do not have an alternative view because in the USA it has not been known about much less valued.

Esp if low income - the world holds different prospects. without a national belief for aiding its citizens.


llee08032
Posted: Saturday, July 18, 2015 10:11 AM
Joined: 5/20/2014
Posts: 4408


Being a victim can steal years from your life! It can suck you in and swallow you up! Coming up and surfacing to the top of the water to breathe is hard! But you must do it to survive. There is a choice, stay sick and shrivel or chose not to be a victim of anyone or any one thing! Watch what you say and do, are you dis-empowering yourself or empowering yourself? Or you or have you labeled yourself a victim? Do you want to cower or stand strong and fight? PWD are not the enemy, it's not our fault. Fight with us to stay strong we must stand tall together. Meet us where we are in the present. Accept us as we are now. Honor us and some of the fantastic things we've done are doing. Don't pity us or you? We deserve better and you deserve better! Have you heard that we want to live well? Please rally for help, for care, not just a cure! Help for you, help for us, help for you helping us, help for us helping you!
llee08032
Posted: Saturday, July 18, 2015 10:21 AM
Joined: 5/20/2014
Posts: 4408


No one wants to do victim well! Make a decision to chose not to be a hostage or a victim. It is one decision that must be internalized and processed well. It takes determination and guts. _ _ _ _ _! Many have to be sick and tired to get to this point. Hit a bottom and bottomed out like the alcoholic. Bottomed out with the pain of victimization, sick and tired of feeling sick and tired! Crawling from the bed to the bathroom to pee and vomit!
llee08032
Posted: Saturday, July 18, 2015 10:34 AM
Joined: 5/20/2014
Posts: 4408


I keep losing post! I'm posting as quickly as I can and breaking it up as well as, breaking it down. Let's start with changing the mindset of victimology! We are supposed to be a country of the most progressive people in all the world! We should be ashamed to be so stuck behind as far as CARE for us and you. We need CARE and resources NOW and so do you! You cannot hand the oxygen mask to anyone on the plane until you give it to yourself first. Our plane is going down and it is very doubtful (realistically speaking and reality based) that a cure can't help us now in this moment! We are much more close to crashing the plane and hitting bottom than we are trying to lift it with a cure. WAKE THE HELL UP AMERICA!
llee08032
Posted: Saturday, July 18, 2015 10:38 AM
Joined: 5/20/2014
Posts: 4408


Thanks for waking me once again alz+!
alz+
Posted: Saturday, July 18, 2015 10:41 AM
Joined: 9/12/2013
Posts: 3608


MIMI - been wanting to ask you for months and just remembered what.

In validation method, the sense of past trauma being resolved - if our EARLIEST MEMORIES are the BEST PRESERVED then it makes sense the person with dementia begins to see the world through the eyes of a damaged child?


Does my question make sense? That if we combine that perspective on "problem behaviors" with supporting and unquestioning acceptance of how the person with dementia sees the world - and OFFER COMFORT it is kind of all the same help?

I just thrive when my husband responds to me with supporting words instead of defensive explanations. I was raised under very critical eyes, and emotional neglect.

I became a different person as an adult but would say none of the wonderful experiences I have had in my life affect me as deeply and quickly as any reminder of being shamed and held to impossibly high standards brings on distress.


alz+
Posted: Saturday, July 18, 2015 10:56 AM
Joined: 9/12/2013
Posts: 3608


Llee - always happy to make some one want to throw up.

We are not a progressive nation. Rugged individualism. Keep the government out of my life! Any one can get a job and support themselves!

Anyway, the huge question you ask is WHY IS DEMENTIA EXEMPT FROM COMMON DECENCY? as any other terminal illness...

"My husband said he thinks it is because being isolated with a person in mental decline creates a feeling in those around them that they too will go down the drain." They suffer from stimulation when trapped at home, and it feels like being trapped and then required to be happy about it.

I think if we'd realize there is no drain we go down, and provide time off through supportive services to patient and CGvr, that would certainly be a fail safe beginning to changing the rudeness and suffering involved in dementia in the USA. Thinking of it as VICTIMIZATION is an eye opener!

I did not feel hostile when caring for my Dad but realized the other day I have been criticizing my Mom for when she was so exasperated with my Dad, but I went to work every day and she did not go out on her own almost ever. She lost her friends because people shunned them once he was diagnosed! She was never a person to take care of anyone in the first place. Not every one is cut out for the job and should not be forced into it.

Not forcing the whole load on a person, to devastate the finances and affectionate reserves because of lack of support has to change because of demand for it.

Love the insights here. Taking dog to lake park in between rain and mosquitoes. Love to all of us!



llee08032
Posted: Sunday, July 19, 2015 10:11 AM
Joined: 5/20/2014
Posts: 4408


alz+ rub a dryer sheet on exposed skin areas to keep the mosquitoes at bay. It works for dog too!

It is hard to look at the truth sometimes and realize your stuck in victimology. It is certainly a good excuse not to evolve and move forward and stay stuck in your crap. There are times when the pity party feels good and we need to wallow and lick our wounds. But when it becomes part of everyday life and your identity it borders on the pathological and professional help may be needed. We can spend time feeling sorry for ourselves or being resourceful.

Everyone seems to be impacted and traumatized by our condition and illness. There are some really heavy duty family dynamics and group think dynamics at play at a very deep level yet to be discovered. My undergrad degree is in addiction studies and I see some similar dynamics that gets played out in families' around their loved one who is an addict or alcoholic where the family gets as sick as the person with the addiction. The whole family dynamic is consumed by the addiction. The addict or the ill person is viewed by the professionals as the 'symptom bearer' of the family dysfunction.

Any person who has any type of brain disorder or disease is vulnerable to stress as posited by the stress and vulnerability models. PWD no matter what stage will react and respond to stress.

w/e
Posted: Sunday, July 19, 2015 1:11 PM
Joined: 3/7/2012
Posts: 1747


I just woke up after going to bed last night at an ungodly hour. Dark thoughts were hunting me. Monsters in my closet were chasing me. At one point during this dark-hour of the soul, I thought for a moment that the whole neighbourhood was going to hear me howling at the moon. A widow weeping.

While having my coffee, I came to Alzconnected to check and see what y' all were up to...
WOW... what an insightful conversation between Alz+ and others. Great ideas for her up-coming presentation.
Ilee your insights on victimization are right on... As well as Mimi's with Validation Techniques.

No victims...
No heroes...
No saints....
Human beings being human.
Truly humans...
Un-chained....

We need to find "the courage to be" in the depth of our soul in order to better face our worries, fears, sadness, loneliness, despair, anger and resentments. And, of course, our angst.

Dis-ability... Dementia.
Yes. A major neurocognitive dis-order. A neurodegenerative disease. As of today, it cannot be cured.
And yes. In time, dementia will impact on a person's abilities. Dementia will impact on family, social and working life. No two ways about it.
So what then, eh?
We do the very best we can day by day...

Let us not be victims . Let us not be victims of a dis-ability. Victims of feeling crushed. And of our angst. And of our lack of certain abilities.

There is no locked door. The prison door is open. The Tree of Life is: Bending. Adjusting. Adapting. Accepting. The Tree of Life is life moving forward. Transforming. And, eventually, transcending.

We are in this existence together, and I emphasize the word TOGETHER. We are a human community. If we hold and support each other back-to-back, here-and-now, with all our humanity, we can forge a better, more calm, more tranquil and more peaceful co-existence between the caretaker / caregiver / care-concierge / care-partner and the person with dementia. We are partners on this journey. We are in the trenches of dementia together. Side by side. Supporting each other.

No blames. No finger pointing. No guilt.
Simply emphasizing love... respect... dignity... self-worth.
.... tender care and lots of patience.

Frankly, and I need to hear loud-and-clear the echo of my own words, we need to learn "to accept" more... in order "to transcend."... Go beyond.

My two cents.



Michael Ellenbogen
Posted: Sunday, July 19, 2015 2:43 PM
Joined: 11/30/2011
Posts: 4460


I have tried to resist a reply but the temptation was just too great.

I have a had the pleasure to offer my help to so many over the years. Many even reach out to directly for advise to help them. The one thing that I find with most care givers is they thing they are doing it all right and it is the problem with the person living with the disease. They so fail to understand that the littlest things can bring such huge changes in their lives. Most of them realize I am right.

I also find many just live in this world here on some website. I have offered help to some and they don’t want it. What does that tell you. They are great desperation and someone offers to possibly give them the best advise since I live with it and can tell you this better than even the a Alzheimer’s Association at times. In my life I have learned that there are many who ask for change and they only say it and will continue to fail. Then there are those who are open and willing to change. They are the ones that become successful. While there battle will not be easy it can be made much better. Hel mine is a nightmare and you don’t see me bitching about it every day. Its now going on 17 yeas. Instead I keep looking to learn and educate others on the good that I learn. Most cannot take that truth. I have taken something devastating and turned it as good as possible considering what I am dealing with. My caregiver could do so much better if they would wake up and embrace the realty. Be proactive, not reactive.


llee08032
Posted: Monday, July 20, 2015 6:39 AM
Joined: 5/20/2014
Posts: 4408


Those folks prefer the term care partners.

Mimi- always we are corrected about the preference for the term 'care partners' vs care givers. We mean no harm or pun. I was wondering if you correct the care partners about terms that they should not use when referring to PWD?

20 things not to say or do to a person with dementia

This is a slightly revised and updated list of tips from the one I published here last week with 17 tips. The day after that I also wrote one called My dementia Trumpet call, explaining a little why I’d put together a list in the first place. Of course, there was some angst from a…

Continue reading →


Michael Ellenbogen
Posted: Monday, July 20, 2015 5:30 PM
Joined: 11/30/2011
Posts: 4460


Boy am I lucky of who my caregiver is. When I see some of the comments made and replies I must be a lucky one as I see some of these poor folks don’t stand chance because the people who take care of them are so full of them self’s and think they are the victims. I only wish them to spend a month in our shoes. They may just have a different mindset that caregiving is not so bad.


Mimi S.
Posted: Monday, July 20, 2015 6:51 PM
Joined: 11/29/2011
Posts: 7027


LLee, No, I do not correct any one. No one likes being corrected.

For those of us in Early Stage and for a bit in mid stage, i prefer Care-partner since it is true. There are many things we can do for ourselves.

Later, when the patient is dependent upon another person, Caregiver seems ore accurate.

But, as far as I'm concerned it's no big deal.

Similar to: do we call it dementia or Alzheimer's? One is a sub-set of the other. If the A word is scary to someone, why use it when talking with that person? Whatever works and the person accepts it.

All advice is person centered. We know what we are experiencing, but every case of dementia is different and so what we are experiencing may not be what someone else is experiencing. That's the advantage of talking one on one. On this site we can't read that facial expression that tells me I'm heading in the wrong direction.

Michael Ellenbogen
Posted: Monday, July 20, 2015 8:11 PM
Joined: 11/30/2011
Posts: 4460


FYI - All about words

http://daanow.org/words-matter/


llee08032
Posted: Monday, July 20, 2015 8:55 PM
Joined: 5/20/2014
Posts: 4408


Thanks for clarifying Mimi.
llee08032
Posted: Tuesday, July 21, 2015 7:30 AM
Joined: 5/20/2014
Posts: 4408


I think w/e and Michael mentioned 'acceptance' which is key to helping us also. We need to be accepted for where we are in the moment, the here and now. If your dwelling on how I 'used' to be then you cannot be fully present with me in the here and now if that makes sense. If your avoiding the 'me' who is here before you that minimizes my existence and worth now. We still want to be worthy, want our life now to mean something. The perception put upon as being a burden takes it's toll on all involved. It steals from us our chance to work things out in our relationships and make peace. I would suffice to say that PWD in the end stages of their lives want to work things out in their relationships and don't want to leave in a wake of bitterness and resentments. They don't want to be resented for being a burden and they don't want to resent you.

What about PWD being grateful to still be alive and have a pulse? Do you think they may need others to be grateful also?

Michael Ellenbogen
Posted: Tuesday, July 21, 2015 9:30 AM
Joined: 11/30/2011
Posts: 4460


Am I wrong or did someone’s post get deleted that was earlier then my last one.


jfkoc
Posted: Tuesday, July 21, 2015 9:39 AM
Joined: 12/4/2011
Posts: 21248


Please...what is PWD
Jo C.
Posted: Tuesday, July 21, 2015 9:59 AM
Joined: 12/9/2011
Posts: 13599


Persons With Dementia ??? That is my guess, jfkoc.
Unforgiven
Posted: Tuesday, July 21, 2015 10:09 AM
Joined: 1/28/2013
Posts: 2659


Michael Ellenbogen wrote:

Am I wrong or did someone’s post get deleted that was earlier then my last one.


No, you are not wrong. I deleted my post to alz+ because of the tone or your reply.

PWD means person with dementia. It is now the preferred term to use.

Michael Ellenbogen
Posted: Tuesday, July 21, 2015 10:42 AM
Joined: 11/30/2011
Posts: 4460


I understand that someone may not agree with you just as I may not like what others say. That is no excuse for people to feel pressure in deleting there emails. We all lose by contributing that type of atmosphere. We all can learn from the good and bad. Hell I use the word caregiver and I hate it but most don’t get it when you say something else and just confuse the issue.


Unforgiven
Posted: Tuesday, July 21, 2015 11:15 AM
Joined: 1/28/2013
Posts: 2659


Truthfully, Michael, we all lose by the atmosphere of self-censorship that goes on around here. All I said is that we are hurting too, feeling lost and inadequate to a job we didn't ask for, anymore than you asked for your brain to pull the rug out from under you at such a young age.

That comment about not fostering an 'us versus them' vibe did not warrant a reply implying that we are full of ourselves and that our PWDS don't stand a chance, because we refuse to wake up and learn. Actually, I do have a fairly good chance of walking in your shoes for more than a month, because I have a parent with dementia. You will never walk in mine.

I've actually learned quite a bit since a friend directed me here. Much of the advice doesn't apply to my PWD or my situation yet, but much of it has helped me accept what things are now.

llee08032
Posted: Wednesday, July 22, 2015 7:57 AM
Joined: 5/20/2014
Posts: 4408


Unforgiven,

CP's/CG's vent on their board about PWD all the time.How do I know this? Because there are times that CG's/CP's come to our board to vent. I choose not to venture on those boards and upset myself. If I want to get stung or hurt all I have to do is visit the other boards. But why do that to myself when I have enough to deal with already? Sometimes I post things on the other boards that may be helpful. Fault finding is easily done on both boards. We have our right to vent feelings also and much to vent about. Most of the CP's/CG's that visit our board respect that and don't pick out things to disagree on or get in a back and forth about. I do hope that you come back and visit us and find that there is more to learn than there is to disagree about. It is important that this board stay safe for PWD's to freely express themselves! Many thanks to all who can respect our view and needs!

alz+
Posted: Wednesday, July 22, 2015 10:21 AM
Joined: 9/12/2013
Posts: 3608


From Michael's link above:

USEDON’T USEPerson living with dementia; or specific condition (ex: person living with Lewy Body dementia)Patient
Sufferer
Victim
Demented
Afflicted
Wanderer
Empty shell
Behavior problem
Sundowner
Feeder
Not all there
Losing his/her mind
PWD
PLWD
Dementia, including Alzheimer’s; or dementia as the umbrella term for the many different forms of memory loss and other cognitive impairmentAlzheimer’s unless used to refer specifically to that one conditionCare partner, spouse, wife/husband, daughter/son, family member, friend (best to ask the individual how he/she would like to be known as)Caretaker
Custodian
Dutiful wife/husband, etc.
Expressions of unmet need – behaviors expressed by a person living with dementiaBehavior problem
Challenging behavior
Difficult behaviors
The condition is –
Challenging
Stressful
Life-changing
The condition is not –
Hopeless
Tragic
The long goodbye
Fading away
Younger on-set dementia to refer to someone under the age of 65 diagnosed with dementiaEarly on-set dementia to refer to someone under the age of 65 diagnosed with dementia
alz+
Posted: Wednesday, July 22, 2015 10:26 AM
Joined: 9/12/2013
Posts: 3608


I am starting to like to call myself A Patient, as in a person with Alzheimer's has to become extraordinarily Patient with themselves to not become a crazy empty shell.

Not sure if joking goes over much. Do like it when people tease me a little at church. While I am laughing I am wondering, "was I supposed to take offense to that?" then I see my friends there smiling and relaxed. I choose that. so far anyway!

.


Paul Hornback
Posted: Wednesday, July 22, 2015 10:51 AM
Joined: 8/9/2013
Posts: 584


I like the idea of being called a patient as well. We do have a disease and that in itself requires lots of patience in order to persevere. Maybe I'm just stuck on "P" words today but do like the whole patient thought.

Think I'll write about that in one of my devotions for next week. I'm going to cut and past your post Alz+ so I don't forget about it!!!

God bless,
Paul


Lisa Ramey
Posted: Wednesday, July 22, 2015 12:00 PM
Joined: 6/20/2014
Posts: 160


Hey Ya'll,

Here's my 2 cents. Being a retired nurse being the patient don't bother me one ioda.Hubby likes care concierge. I like it too.

I just don't get wrapped up in that stuff.
Now if someone is condescending who knows about my dementia or has deduced the notion that all of a sudden I'm the village idiot then I set them straight, quick usually by comparing I Q and academic achievement. It works it's done using my most gracious southern charm.

You all be good to yourselves,

Lisa Ramey


Paul Hornback
Posted: Thursday, July 23, 2015 9:28 AM
Joined: 8/9/2013
Posts: 584


Lisa, that southern charm always seems to gracefully make things smoother. What a gift! I love it.

God bless, Paul


llee08032
Posted: Friday, July 24, 2015 10:40 AM
Joined: 5/20/2014
Posts: 4408


All these politically correct terms do get on my nerves at times! I don't mind being a patient either. I also don't mind being a client. In the psychology field patient or client is no longer acceptable or politically correct. Instead persons are referred to as consumers, person served, service recipient, consumer served, and it is forever changing! I feel like I'm working in K-Mart when I have to refer to a human being as a consumer. And I feel like I'm working at McDonald's when I have to refer to a human being as a person served! I think patient and client is both dignified and professional.
alz+
Posted: Tuesday, July 28, 2015 11:19 AM
Joined: 9/12/2013
Posts: 3608


https://youtu.be/nyp8rgH4MtU

video by Dr. Richard Taylor on new view of people with dementia (PWD)

In this short video Dr Taylor speaks about how we are perceived and the reality of how we still exist as human beings, not empty shells.

there is no war between those who care for us and we who are cared for.

To challenge each other's views is not meant to be insulting, some of us may sound extreme or rude. Try to look past that and listen more deeply.

the video is short and to the point and explains better than I ever will how desperate it feels to have your time for communicating shortened day after day, and wanting those who seem so sad about our condition and prospects realize we are still alive and wanting your love and respect and understanding.

this is true for all human beings, all living creature - the desire love, respect, understanding. what changes one makes to create a more peaceful home for the person with dementia in reality is a way of being in the world which helps us all feel valued and less fearful.

**********************

I missed some posts in here, often do not return to old posts once they get bumped lower. If there was something you mean to say to me directly please send me message to inbox. love and courage


llee08032
Posted: Tuesday, July 28, 2015 9:36 PM
Joined: 5/20/2014
Posts: 4408


Richard Taylor is the dear man that just passed away from cancer. Apparently he was revered in the dementia circle for good reason. God rest his soul!