RSS Feed Print
I learned to despise that word "caregiver"
Michael Ellenbogen
Posted: Wednesday, November 30, 2011 5:28 PM
Joined: 11/30/2011
Posts: 3413


 

I got up at 5:00 AM this morning with many thoughts going through my mind. My brain felt like it was on fire. One thing that kept coming to mind was the word “caregiver.” The other day this word came up again. As I think I said before, I hate and despise that word. I was wondering how others felt about that name, especially those in the early stages of dementia. Did they ever ask what patients thought before using that word? I think a more appropriate name would be “assistant.” If I were referring to that person, I would say, “my assistant.” Now I am not sure how those who are caregivers would feel with that change, but they should keep in mind that we are the patients. For them it is only a job name, while to me it feels like a description. I have no issues using the name if I was in the final stages of the disease, but right now, I find it demeaning. 

 


JAB
Posted: Wednesday, November 30, 2011 6:11 PM
Joined: 11/30/2011
Posts: 740


Sorry, "assistant" doesn't do much for me, and precisely because what I do is not a job.  The "patient" in my case is my dearly beloved husband. 

 

 In some countries, the word "carer" is typically used.  Others have suggested "carepartner".  How do those grab you? 


Ttom
Posted: Thursday, December 1, 2011 7:28 AM
Joined: 11/29/2011
Posts: 182


Carepartner (for my wife only) sounds much better to me also. Thanx for that JAB!  

Not to sure if we have much of a voice in the selection of the pronoun. I just don't let it bother me and really.... it is about time! I have been the major Caregiver for the entire family for the past 40 years. Back then I never felt superior to any of my family members. Being part of the family was good enough for me. I really don't see any big issue with calling people who help me Caregivers.

 

My wife does help me with putting up my drugs and with the check book. I know that I would mess both of them up and I'm thankful for her help. I an easily call her my Caregiver or Carepartner. At this point in the disease (much like you)  I don't feel that I have anyone else that qualifies for either of those terms.

 

Michael, your about 2 hours away from me. Do you ever get to Harrisburg?

 

Tom


Cheryle Gardiner
Posted: Friday, December 2, 2011 10:41 AM
Joined: 11/30/2011
Posts: 529


I agree with JAB - I was my husband's assistant when I worked for him (we met on the job!), but I'm not his assistant now! I have also heard the word "helper" used, and have no trouble with that one. How do others feel?
Michael Ellenbogen
Posted: Tuesday, December 6, 2011 1:02 PM
Joined: 11/30/2011
Posts: 3413


Hi Tom,

 

I do come up that way some time. I may even have a speaking opportunity there in the next few months.

 

As far as caregiver, I am surprise you feel that way. Most YOAD people felt the same way about that word. I do not know what else to use, but I just don't like it. Especially when people around me ask if my "caregiver" is her with me or must have a "caregiver" with you. Let me decide when I need some one, I am not a child and do not treat me like one is my thought.

 


Mimi Steffen
Posted: Wednesday, December 7, 2011 7:54 PM
Joined: 11/29/2011
Posts: 7029


I'm with JAB. I prefer Care Partner. For me, nothing is needed since I'm still able to live by myself.

 

I meet with  a very small group of Early Stagers and their Care Partners. We had a small discussion. Most of them do not feel they are at the point where they are "giving care". Thus, they are also not inclined to join a support group, since they feel they have almost nothing in common with those who are truly giving care. They liked the term partner.

 

And Michael, Welcome to our group. Glad you and Ttom found each other. Too bad you weren't at our recent Legislative Day in Harrisburg. It made a very long day for me, but I feel that we who have the disease can perform a vital educational job by speaking with our legislators.


skericheri
Posted: Wednesday, December 14, 2011 3:41 PM
Joined: 12/10/2011
Posts: 287


I hate labels...Even during the period that Charlie required extreme amounts of care the term caregiver stuck in my craw. 

 

Everyone has a name.  In my opinion they should be used and when necessary a clarifier like husband, wife, partner, helper or aide added.


SnowyLynne
Posted: Tuesday, December 20, 2011 12:01 PM
Joined: 12/1/2011
Posts: 29


I was a caregiver for 30 years,former CNA.Hubby is my carepartner,since we are partners in this crazy disease..........
Chuck11187
Posted: Thursday, December 22, 2011 1:24 AM
Joined: 12/21/2011
Posts: 1


I like that, I'm not crazy about any of the lables like caregiver etc.. Why not just use their real name.

 

This is Jane....I will use it from now on.    THANKS!!

 

 


skericheri
Posted: Thursday, December 22, 2011 1:54 AM
Joined: 12/10/2011
Posts: 287


Chuck---Charlie, my partner of 18 years, passed on 10/15.  Although we both lived with his diagnosis for over 6 years, he did not accept the diagnosis and appeared to be spared the fear associated with it. During that time I lived in constant fear of what might happen next. 

 

Believe it or not...So many of the things that I dreaded never happened...and...I was able to accept those that did occur with no lessening of my love for him. 

 

I know how to invite people to be Connections...but...The function is useless to me since I have not been able to figure out how to send an individual e-mail to a connection.  If you trust me, you or your wife are welcome to e-mail me at:

Skericheri@yahoo.com

 

In any case...I wish both of you the very best.

 

 


Jim Broede
Posted: Thursday, December 22, 2011 4:09 AM
Joined: 12/22/2011
Posts: 5462


A care-giver is a care-giver is a care-giver. Doesn't matter what a care-giver is called. --Jim
soledad
Posted: Thursday, December 22, 2011 1:11 PM
Joined: 12/15/2011
Posts: 48


Actually, Michael, I think I get your point although I wouldn´t say I despise the word.  I do think we have a tendency nowadays to want to "brand" everything a little too much, including relationships that are essentially just based on old-fashioned compassion, sense of responsibility or commitment.  Family members stick with you, neighbors look out for you...we don´t need a label for everything. 

      And I can easily understand how from your perspective, especially early on, you might not like to be referring to someone who helps you with certain things as a "caregiver" -- I can see how that could make you feel like you´re putting yourself in a more helpless or needy state than you really are.  I don´t think "assistant" would work well here but hired caregivers in other countries are sometimes called that

     I never thought of myself as my mother´s "caregiver" until just recently -- and it´s been over a decade -- and I still have a little trouble thinking of it that way.  I was just her daughter, I looked after her, I was responsible for certain things like trips to the doctor or cooking -- just because I live in the area and she´s my mother and she can´t live alone.

      Even now I see the label more as a way to identify the situation that the caregiver finds him or herself in.  You need some kind of label so that doctors know what your relationship is, beyond biology or marriage, and you often need to identify yourself at work, sometimes socially.  It´s a "handle". 

      But you´re right that there´s often a long period at the beginning when not much "care" is necessary, just some help with certain things.  If you prefer to call whoever gives you a hand your "assistant", I don´t see any legitimate reason why that person should object!


soledad
Posted: Thursday, December 22, 2011 1:24 PM
Joined: 12/15/2011
Posts: 48


Just one other thing -- from the perspective of the one providing help, the term "caregiver" really takes on meaning when the responsibility starts to take over your life  When it gets in the way of your social life or when you start wondering if you´ll be able to hold onto your job, when your life becomes so defined by the responsibility of helping someone else that you feel as if  you have a new identity.  But that does often happen over time, sometimes it takes years, sometimes months....
VKB
Posted: Friday, December 23, 2011 6:17 PM
Joined: 12/4/2011
Posts: 3622


Michael,

 

I am sorry that you hate the word caregiver.  Just know that most home caregivers really do "care" about the person they assist.   Yet, I do understand your point too, and no one will mind if you use the word assistant in place of caregiver.   If you do it often enough, you might start a trend.

 

Wishing you God's Peace

 

 


Ethiopia
Posted: Saturday, January 28, 2012 11:30 AM
Joined: 1/28/2012
Posts: 2


Regarding Soledad's post "Just one other thing -- from the perspective of the one providing help, the term "caregiver" really takes on meaning when the responsibility starts to take over your life When it gets in the way of your social life or when you start wondering if you´ll be able to hold onto your job, when your life becomes so defined by the responsibility of helping someone else that you feel as if you have a new identity. But that does often happen over time, sometimes it takes years, sometimes months...."


Amen! (said with a loud sigh of exhaustion).


Jim Broede
Posted: Sunday, January 29, 2012 4:07 AM
Joined: 12/22/2011
Posts: 5462


Ethiopia wrote:

Regarding Soledad's post "Just one other thing -- from the perspective of the one providing help, the term "caregiver" really takes on meaning when the responsibility starts to take over your life When it gets in the way of your social life or when you start wondering if you´ll be able to hold onto your job, when your life becomes so defined by the responsibility of helping someone else that you feel as if you have a new identity. But that does often happen over time, sometimes it takes years, sometimes months...."


Amen! (said with a loud sigh of exhaustion).


I took on a new identity when I became a care-giver. Gradually, over 13 years. And now that I reflect on it 5 years later, I've concluded it was a good identity. Did me a world of good. Being a care-giver for my dear, beloved Jeanne. Made me a better human being. I'm still learning from it. What once seemed like negatives have turned into positives. Believe it or not, being a care-giver was a blessing. --Jim
Iris L.
Posted: Thursday, May 10, 2012 2:08 AM
Joined: 12/15/2011
Posts: 16574


I am my own caregiver because I have no one else. 

But I can't really care for myself.
 

 

I don't ever expect to have a caregiver. 

I'm going to muddle on as best I can.
 

Iris L. 


Jim Broede
Posted: Thursday, May 10, 2012 12:21 PM
Joined: 12/22/2011
Posts: 5462


Iris L. wrote:

I am my own caregiver because I have no one else. 

But I can't really care for myself.
 

 

I don't ever expect to have a caregiver. 

I'm going to muddle on as best I can.
 

Iris L. 


I sense that you are taking good care of yourself, Iris. That you have even learned to pull yourself up by your bootstraps. You are determined to make a go of it. By keeping your mind active. You discipline yourself. You set a fine example for others. You amaze me. --Jim
TiggerPooh
Posted: Wednesday, March 28, 2018 7:22 AM
Joined: 2/15/2018
Posts: 94


I wonder, with a true sense of curiosity, how Michael Ellenbogen and others with dementia or suspected dementia feel about this term now. This thread was originally posted in 2011. I am a relative newcomer to the dementia world, and I have not, through reading, seen any evolution from 2011 to 2018. I wonder how persons within the dementia community feel about this terminology now.
Alexander_Green
Posted: Wednesday, March 28, 2018 7:49 AM
Joined: 3/9/2018
Posts: 37


Just registering here as a person with dementia that I don't feel particularly hot or cold towards the term "caregiver." Of course, I don't want one. I would be okay with calling that person an assistant, if that sort of help is needed by me at some point. I think I would care more about whether that person could accept me where I am, and make me laugh.
Jo C.
Posted: Wednesday, March 28, 2018 9:52 AM
Joined: 12/9/2011
Posts: 11114


Hi Alexander, you may Post on any Forum you wish; but have you seen the "Young Onset" Forum where you will find more input regarding such topics?

This is indeed a very old thread, written seven years ago; Mr. Ellenbogen does visit the Young Onset Forum, so you may be able to see if his thoughts have changed over time and how others feel about it.

NOTE:  Most everyone with dementia posts on the Young Onset Forum no matter their age or onset of disease.  It is the gathering place rather than using the "I Have Alz's. Forum."

Best wishes, just an FYI if you were not aware.

J.


Alexander_Green
Posted: Wednesday, March 28, 2018 4:58 PM
Joined: 3/9/2018
Posts: 37


Michael, I've brought this thread to the top. What are your thoughts now?

-- Alexander


ThisLittlePiggie
Posted: Thursday, March 29, 2018 8:47 AM
Joined: 2/19/2018
Posts: 44


I feel that my identity has definitely shifted. Originally I was just a daughter, then as I read more, and became more educated, the identity shifted. Sometimes I was even the mother, or the sister. But the job was, as a caregiver, because that was what I was doing day in and day out. I still hold onto the wife part, mother part, and pretend to be a daughter, though my role now has definitely shifted. I still identify with my professional pursuits as well.