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Which do you prefer: caregiver or care partner?
Iris L.
Posted: Monday, June 16, 2014 12:27 PM
Joined: 12/15/2011
Posts: 18222


I attended a Family Caregiver Support Group a few years ago.  The facilitator said the more modern term is care partner, in order to avoid saying caregiver and care recipient.  This makes it seem like the caring is one way, done to a completely passive recipient. 

 

However, she said the term care partner has not gotten recognition. 

Personally, I prefer care partner.  I don't need a caregiver, I may need someone to partner with me in getting things done.
What do you think?  Which do you prefer?  Does it make a difference?

Iris L.
 

 


Paul Hornback
Posted: Monday, June 16, 2014 12:41 PM
Joined: 8/9/2013
Posts: 584


Iris, I think I prefer care partner. It sounds more like me and the person are in this together trying to partner through it. I know its just semantics but I prefer the care partner over the care giver.

God Bless, Paul


Myriam
Posted: Monday, June 16, 2014 10:41 PM
Joined: 12/6/2011
Posts: 3326


There is an organization that is working on changing the term to "care partner", along with other terms and outcomes. The Dementia Action Alliance began in Europe and is now in the US. On June 30 and July 1, a summit is being held in D.C. to discuss "person-centered living". It will be the second one held in the U.S. I've been invited, along with two other diagnosed persons.  

  

Through this Board, I would love to get your feedback on the issues that come up while the conference is taking place.  

  

Here's their website: http://www.ccal.org/ 

 

Here is their definition of Person-Centered Living: 

Person-centered living (PCL) is a way of life centered on personal preferences and values that stress dignity, choice, self-determination and individuality. Many of our nation’s aging and disability services and support have been all too lacking in understanding the need for this humanistic dimension. The new federal health care reform law will begin to change this. More can be done — your voice counts! 

  


Iris L.
Posted: Monday, June 16, 2014 11:16 PM
Joined: 12/15/2011
Posts: 18222


Myriam wrote:

 

  

 Here's their website: http://www.ccal.org/  

  

Here is their definition of Person-Centered Living: 

Person-centered living (PCL) is a way of life centered on personal preferences and values that stress dignity, choice, self-determination and individuality. Many of our nation’s aging and disability services and support have been all too lacking in understanding the need for this humanistic dimension. The new federal health care reform law will begin to change this. More can be done — your voice counts! 

  

 


I think this is a great idea!  I wonder how person-centered living would be implemented.

Iris L.


Myriam
Posted: Tuesday, June 17, 2014 6:43 PM
Joined: 12/6/2011
Posts: 3326


Will let you know what I learn in the conference. It's being done in several countries in Europe, and my understanding is that it's a movement for "person centered" care, as opposed to "provider directed" care.
Mimi S.
Posted: Tuesday, June 17, 2014 7:04 PM
Joined: 11/29/2011
Posts: 7027


Lucky you!!  Do keep us posted. And DC can be very muggy at this time of you.


I had a short lived Early Stage Support Group. All of us much preferred "Care Partner."  None of those with partners, including the partners themselves, considered themselves "care-givers." At this stage, what was needed as one gentleman stated: a social secretary to remind me of where I'm supposed to be when. Or perhaps to check on pills. Those of us in Early Stage are all capable of feeding ad dressing ourselves. 


Jo C.
Posted: Wednesday, June 18, 2014 8:14 PM
Joined: 12/9/2011
Posts: 13319


This topic comes up now and then, and what I find is that it seems that those who have been diagnosed and are continuing to be high functioning along with their significant others, prefer, "care partner."  I can see why; they are indeed partners in care and planning.  The folks here are in that category.

 

However, in some discussions, when  the Loved One is gravely, gravely compromised, the topic often gets a different result.

 

 In one support group I attended, all members had severely compromised LOs who were fully incontinent, had behavioral issues, required one on one intensive care in the home setting, and did not prefer the term, "care partner."  The feeling was, that there was no "partnering;" they did it all.  One of the women said she would not consider "partner," but she would go for "care provider" as that is what she did day in and day out. 

 

So; I suppose it is all in one's viewpoint as to how one formats a point of view.  Sometimes I wonder if we need to "invent" a totally new word for all of this that would cover everyone.  Or; perhaps like the stages of disease, there  are stages for significant others too.  Perhaps they transition from "care partner" to "care provider."

 

I must have eaten too much sugar, I am now not making much sense.  (I had cookies!)

 

Hugs,

 

Johanna

 

 


Myriam
Posted: Wednesday, June 18, 2014 11:16 PM
Joined: 12/6/2011
Posts: 3326


I agree with you, Johanna, but the converse is also true that a care provider is no longer called a care provider when he or she places their loved one in a facility. I suppose they are then called spouse or sibling or friend, etc.
Lonestray
Posted: Thursday, June 19, 2014 2:54 AM
Joined: 8/12/2013
Posts: 158


 

Here in  the UK the term used is carer. Personally I never considered myself as a carer for my late wife. I was her husband, who not only promised to love and cherish in sickness and health till death, but desperately wanted to be there for her all the way.

As I saw it, when she could no longer speak or feed herself and I was fit and well, therefore her needs came first. It was for me to make her feel wanted and loved all the more. Is that not what wives/husbands do?


Myriam
Posted: Thursday, June 19, 2014 1:32 PM
Joined: 12/6/2011
Posts: 3326


Bless you, Lonestray, that all care partners are as caring as you.
Mimi S.
Posted: Thursday, June 19, 2014 6:49 PM
Joined: 11/29/2011
Posts: 7027


How about more frequent use of the term: Advocate. Even when a loved oe is placed, you are still advocating for the best for them.
GGi
Posted: Sunday, June 22, 2014 6:53 PM
Joined: 2/20/2014
Posts: 452


Weighing in - as a spouse whose husband been diagnosed with ALZ. 

I don't like any of the 'terms'- personally- as I will always think of us as a 'couple'.  Even though our relationship is 'evolving' into something new and different- we are still a couple.  

The term caregiver- is really not a 'noun' rather a descriptive term- which anyone who has been a partner, family member, assumes from time to time...depending on various circumstances which occur in our lives. 
I took care of my Great Aunt for the last 4 months of her life- quite suddenly- and I never thought of myself as either a caregiver or care partner- rather as her 'Grand Niece' - I did not feel 'obligated' rather I felt drawn to her to do this thing for her.  
So- if your Spouse is diagnosed with cancer, or dementia, or ALZ are you no longer a 'Spouse'?  
Today - we had a wonderful day- different yes- but still if was lovely.  He can still make me laugh- he can still laugh at himself- and as time has gone on- we have actually- in many ways- become closer- as we both- 'come to terms' with what is happening to 'us'- as well as him.  
I don't think a 'spouse' is ever not a 'caregiver', as we always are caring for one another throughout our lives- whether we have a cold, flu, broken bones, etc.  Don't we?  I have taken 'care' of him and he has taken 'care' of me...over the years.  Why is this 'different'? 
Maybe I am too new- or too sensitive - or too unwilling to accept I will 'lose him'- but regardless I will always be his wife. I don't think of what I need to do to assist him takes away from that. I think that the spouse of a very 'ill' person- or who has been diagnosed with any 'progressive terminal illness' is much much more than - a 'caregiver' or 'care- partner'.  Spouses are woven very intricately into one anothers' lives- in such a way- one cannot pull apart and really the illness tries- but it can not do it either.  The pain, frustration, helplessness felt by the non-ill spouse is very different- but has quite a bit of commonality with the ill spouse.
Sorry- I am probably not helping!   
Caregiver - should be used for non- family members only.  Care Partner? Seems too - distant. I like HusbandCAre- WifeCARe- Family carer...  

puppydog
Posted: Saturday, July 26, 2014 4:43 AM
Joined: 1/9/2013
Posts: 69


New to all of this, but I dislike caregiver immensely.  It feels like I am not related.  I am my mom's daughter (and her advocate!), my husband's wife (and advocate), my father's daughter (and his support person).  Yet I care for all of them very much- both in time commitment and love. 

In adding my further two cents, I also like the term from the Alz Reading Room (Sorry, I am forgetting his name) of "deeply forgetful" instead of dementia.  It just sounds so much more compassionate.  I have seen people get very fearful of the LO if the "dementia" word is used - they assume late stages automatically.  A lot of misinformation out there.  Even as I read everything I can find now a days....lots more to learn.


jtymer
Posted: Friday, August 8, 2014 7:16 AM
Joined: 1/24/2014
Posts: 978


I call myself her husband, but it am also her advocate in every sense of the term.  

 

When she was at home with me, I was her husband too. But I also provided and administered to her care for all things.  Now, she has 24/7 care and they provide and administer the direct care, but I am involved in each decision on what care she gets and the method for which it is to be delivered.  

 

For me, I would currently call myself an advocate.  The job is the same, regardless of the label.   

 

Thanks for posting this.  I caused me to think about it more, as opposed to just assuming.  

 

jtymer


1Day@aTime
Posted: Friday, August 8, 2014 12:15 PM
Joined: 8/26/2012
Posts: 257


IMHO people get too caught up in labels/definitions.  I'm his wife, and will always be his wife, until the disease takes him.  It is only the additional responsibilities that are added that changes. As the disease has progressed, I am now his wife who provides 24/7 care which includes the duty of being his advocate and now "representative" in Social Security matters.  If he ever has to go somewhere for continued care, I will still be his wife which will include the duty of advocate as well.  The change there will be that I will no longer provide 24/7 care for him--in essence, I will still be his wife, but no longer his 24/7 caregiver.
BBobAZ
Posted: Sunday, August 10, 2014 3:44 PM
Joined: 6/5/2013
Posts: 22


As a person with early-stage, mild AD, I definitely prefer care partner.

 

Just wish I had one.


GGi
Posted: Sunday, September 28, 2014 8:55 PM
Joined: 2/20/2014
Posts: 452


So my 2 cents- is this- 

We go through multiple 'phases' as a married couple throughout our lives.  However this particular 'diagnosis' is a major game changer.  

there are no 'words'' to truly describe what those of us lovers who are 'slowly left behind'  as our loved one leaves us.

I imagine a serious of 'names' that represent the 'stages' of acceptance and love that comes as this disease takes the person we love so deeply and who was once such an integral part of our lives...

For me- he and I - were "one" .  

Nothing - else....really ...nothing special.....apart from we were intertwined in each other's lives in such a way as siamese twins may be.  Then slowly, yet painfully, the separation begins.

How do you describe this when you are 'spouse and lover'?  I imagine this differs between couples....but in reality it would be nice to come up with a series of phases..... to sort of depict those stages which we go through.  

First- being - complete disbelief- and clinging to 'what once was' with a 'hope' that springs eternal.  

The second- some acceptance- 'this is really happening...or is it?" 

The third- 'more acceptance' - it is happening- but I don't like it one bit!

The fourth- 'resistance- must be some other answer- it simply can't be' 
The fifth-   ' denial- this is not happening to 'us' - he/she is simply fine- I just need to be a better spouse.  
Please - take it from here- all of you who love your spouse- know what I am saying here...
"Care--partner"  I don't like it and I don't think so.  We were lovers, we shared a rich wonderful life- children, grandchildren....'partner' does not do it for me.  
Stages...yes...many I've been through and I'm quite certain that some have been through more than I.  I would like to hear from you all how you really feel.  If you can bear to share it.

gigi.  

BBunny
Posted: Friday, October 24, 2014 12:01 PM
Joined: 5/28/2014
Posts: 458


 For Bob, God knows your need...there are special people with a heart to care for others in this world.  I pray you will always be and feel cared for in the kindest, most gentle and respectful way. God bless and keep you, B

 On the caregiver topic....There is a young wife in our town that is always going on the town's local Facebook page and talking about how she is the full-time caregiver to her husband who has PTSD.  She then tells about his nightmares, etc., all publicly. I literally cringe when I read these posts.  Here he is, a big strapping tough guy Marine, who is suffering from the trauma of war in Iraq. She is his wife. It seems like a betrayal of trust to me. I think how he might feel.

My hubs has EOAD, early stages yet, but I would never embarrass him by saying I'm his caregiver.  What about when he got up everyday at 4:30 and drove to the miserable smelter plant for us?  He cared for us.  It's what families do.  I just think we should be sensitive about using these terms.  He jokes and calls me his brain, his boss, his personal secretary.   But I'm just being his wife of 40 yrs.  We are in this together, all the way. Love is an art form, constantly evolving.
Iris L.
Posted: Friday, October 24, 2014 4:56 PM
Joined: 12/15/2011
Posts: 18222


It's interesting to read the varied responses.  Do any more patients want to share? 

 

 When I learned about the term care partner, I was told that the complentary term was "care recipient."   

 

What do patients think about the term, care recipient?  I know the social services use the term "client."  The medical world uses "patient."     

 

Personally, I prefer patient, because that is what I am used to.  Client is okay, also.  I don't care for care recipient. 

 

Iris L. 


Mimi S.
Posted: Friday, October 24, 2014 6:50 PM
Joined: 11/29/2011
Posts: 7027


After sa lot of thought i agree with Johanna. Those of us i Early Stage really do have care partners. Certainly i the final stages, the term is care-giver. If your loved one is in a residence, whichever of the above is more appropriate. or would they prefer Care Advocate, because once placed, they will need an Advocate.
 
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