Loading discussion content. Please wait...
I Have Alzheimer’s or Another Dementia
Which do you prefer: caregiver or care partner?
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.
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
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!
Here's their website: http://www.ccal.org/
I think this is a great idea! I wonder how person-centered living would be implemented.Iris L.
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.
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!)
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?
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.
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.
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.
As a person with early-stage, mild AD, I definitely prefer care partner.
Just wish I had one.
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!
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.
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.