I am absolutely a believer in the idea that words DO matter. I work primarily in the field of Alzheimer's disease (AD), so there are many phrases I object to. People without AD are said to be mobile or to walk; people with AD are said to wander. People without AD are said to get tired at the end of the day; people with AD are said to sundown. I am on a personal crusade to stop using words for people with AD that make their behavior sound bizarre, and I could write at length about the topic. However, my number one bothersome phrase is "victim." I never use "victim" to describe either the person with the disease or the caregiver, because it is a hopeless and powerless word defined by misery. Each of us must face obstacles in life that perhaps we would not wish to face, but there are always gifts wrapped within the barbed wire of disease; for me, they have been the amazing network of friends and colleagues who are sharing the journey and who uplift me when I stumble.

Sincerely,

Kathy Laurenhue 

"Caretaker" instead of "caregiver."

C.M.

Are you getting help?
You should get some help.

B.W.

I so enjoy your newsletter every week, and this week's really hit a nerve! I am a caregiver for my 2-year-older sister (she's 82) who suffers from Alzheimer's. She has lived with me since 1993 and began deteriorating about 3 years ago. Since she has been with me that length of time, and her grown children are still busy raising children and working full-time (both husbands and wives) I have chosen to care for her. I know her better than they do at this time in her life. Her oldest son expresses concern about the "burden" this is for me. I am healthy and active and I am my sister's sister! Where's the "burden"? I consider it a privilege to be able to care for her and make sure her life is as comfortable as possible. I do get respite care once a week, and, as time goes on, will be able to tap into the agency (Right at Home of Des Moines) for more help, as needed. I agree with you and all the others. "Burden" is a real misnomer for the caring we are able to give whole-heartedly.

Thanks for all the valuable info you present every week! Keep on keeping on!

D.K

Hi Gary

My problem is with the use of the word "diaper" when used with an incontinent adult. Why can't one say "disposable underwear"? That is what it is and maybe the comedians will have a harder time making jokes about them then.

Thanks for the chance to vent

J.M.

Thanks for the kvetch about parenting parents or role reversal. I cringe every time I hear that. Also, the caregiver burden is another one I agree on. Another bothersome phrase is "behaving just like children". Why don't we understand that childhood is not the only time in life that we may need others to help with functional activities of daily living. Why do we always compare these needs to childhood? How about "maintaining your independence" - why don't we talk about interdependence- how we need each other and depend on each other in different ways. Thanks for allowing me this opportunity to kvetch about bothersome phrases and gifting me with this new term.

Blessings....

Ida O Nezey, MS, CFLE, FT, Coordinator

Use of medical terms to identify someone………Handicapped, Retarded, Wheelchair Bound
People first language identifies the person first - Bob has a physical disability
Tim uses a wheelchair for mobility
Andrew has Mental retardation
These are just a few…….
I have been a caregiver for my son all of his life and he is now 22 years old.

T.W.

One of the phrases I have trouble with is CAREGIVER.

The care I give my husband is as a WIFE and out of love. When I first heard the term caregiver I thought a professional who cares for patients in a hospital or nursing home, or maybe even in the patient's home. I even thought of caretaker as someone who takes care of a garden and lawn. The term caregiver is too impersonal and clinical to fit that of a loving wife or parent, etc. I certainly do not see myself in that kind of roll, even though I have now become more comfortable with the term.

Judy