I think most caregivers do not ask for necessary help due to costs and loved ones' personal issues.

I agree with all of your comments regarding this article! I have been dealing with nurses/doctors like the ones each of you describe since August 2012. It amazes me how transparent so many of them are about what they know and or how to care for MY mom, who I have had the privilege of knowing for almost 60 years. Mom is 81 years young now and although her body is causing many problems for her, we are blessed her mind is still very clear. She has daily run ins with medical employees who treat her as if she was in full dementia. It is a constant battle for her and me to remember to "treat others as we want to be treated". How do we get the message out to those in charge of our medical needs?

One of my own pet peeves with nurses is how they assume you know nothing if you don't have initials behind your name, even though you know your elder better than they ever will. I've had to fight nurses on CPAP usage, on meds, on the presence of an infection (something the nurse ignored until it became life-threatening) along with other things like supplies and basic communication between them and myself, my mother's primary caregiver of eighteen years.

And I also insist on their addressing my mother respectfully by using Mrs. So-and-so instead of a first name because these nurses are young enough to be my mother's grandchildren.

I loved the comment about how they wish that WE knew not to treat our elders as if they were children. I don't treat my mother that way, but I've seen many medical professionals who have. Trust me, I don't confuse who is the elder here, even if they do.

These folks also seem to want to yell when they speak to her. Like I told them, just because she has an open abdominal incision doesn't mean that she can't hear them speak in a normal tone of voice. It didn't make her deaf.

My mom has one doctor that takes the time to truly listen and he spends as much time with patients as necessary otherwise they do not listen, they are in a hurry.

I know for myself, I am working on a book for the 24/7 caregiver. I get tired of being told what I should by those who do not and have not cared for someone 24/7. I was recommended to read a couple of books neither of which were done well or by those who did the caring full time.

You are right about the differences and personally, when I hear my mom excited that is my reward because that means we did something she liked and enjoyed. That is all the reward I need.

I have a 2nd cousin that just works with Alzheimer's patients for her paycheck and thinks because she got one certification she has a clue what it is like to deal with someone on a 24/7 basis.

Echoing krusso -- need to be there to tell nurses what is "normal" for your elder (and also for them to tell you what is "normal" for 2-3 post surgery, etc.). Gma got WORSE 2 days after surgery (loopier). Turns out that catheter had been removed too early, & her bladder was not working. Nurse change during those days meant that the (very good) nurses didn't register that she had gone downhill. Fortunately, a very attentive one thought to check fluid & noticed the problem -- catheter re-inserted, issue solved.

Like Marco40, when mom was admitted to the "rehab ctr"the first weekend or maybe the 2nd, not sure which, she was acting strange - I asked the nurse & she "replied: "oh to me this is 'normal' - since she was just admitted nobody told me anything different" Well, guess what? If someone HAD thought to call me BEFORE they got her to sign a packet of paperwork MAYBE I could've TOLD them some issues abuot her!!!!!!!!!!!!!!!!!But NOBODY called me AND I had to chase down her Social Security check because they took control of being payee!!! If I had BEEN there when she signed that damn paperwork I wouldn't have had to be on the phone w/ss it was at least 20 times in 2 months!!! I finally got that one check in Feb 2012!!!All this while undergoing treatment for my own life changing illness! Ugh!!! Wow, once again, Marco40 got it right on the mark! I agree 100%! Although I'm not w/mom 24/7 I've been right there with her my entire life & intend to be even when she no longer recognizes me - & right to the end of her life.

I have found that nurses are often more knowledgeable about drug effects and diseases than doctors! The doctors that I deal with just hand out pills, and one home nurse said that she was worried that the many bp pills would cause a fall. Doctor seems unconcerned, and when you start questioning them, some get so defensive that they either pretend they didn't hear the question or they tell other family members that you don't know what you are talking about. There was ONE doctor who would say ' I don't know about it, but if you see an article about this, please copy it and pass it on.'
Unfortunately he was in the minority. For most doctors, it's a pill for this, and then a pill for the side effect and then another pill to help with another side effect.....

I agree with two of the reader's comments. I took care of my Alzheimer's Mother for about 10 years. Unfortunently, most Drs. and Nurses didn't have a clue as to what was going on..rather would perscribe a barrage of drugs in hopes to remedy a situation...which most often created an even worse situation. Most caregivers that are around the clock know their loved one better than anyone. It is a continual learning process, but I am here to tell you that most Nurses and MD's were not connected. Some were, but not many. To this end, Nurses and MD's have a lot to learn from the primary caregivers..but seemingly don't or can't spend the time to listen. It's called listening, and there isn't a lot of that going on with the majority of those within the medical profession, amongst and with Dementia/Alzheimer's patients and their caregivers.

I want to thank agingcare.com for this article because even I needed to be reminded of these few basic facts - ESP the last one - EVERYONE needs a break - I know a lot of people cook meals for their loved ones in nursing homes, bring the meals to them EVERY day & feed them as well. I couldn't do that & I know this about myself so I allow the home to give her meals - I just don't have the emotional strength/energy to do that every day but even one of the daughters in my grief support group did that but I can't - I do what I can & I just hope it's enough...but I really needed to hear that from nurses themselves.

Nurses are awfully busy. Many are unaware of specific diseases, as well as doctors. My dad's doctor didn't have a clue that dad was palliative and had a brain tumour, as well as dementia. It was tragic.

My husband was hospitalized several times in the 9+ years he had dementia. None of the nurses in any of the hospitals, including one that regularly is ranked in the top 100 nationally, ever knew diddly about dementia. I quickly learned to ensure that a family member was with my husband 24 hours a day, taking shifts with my kids. I find an article about what nurses wish caregivers knew extremely ironic. I could have taught any of the hospital nurses major lessons about caring for folks with dementia. Don't get me wrong. Most were excellent in other ways, just clueless about dementia care. (This excludes the hospice nurses, who knew about dementia in general and were willing to learn about my husband's particular kind of dementia.)

I recommend the book, "Improving Hospital Care for Persons with Dementia," by Silverstein and Maslow. It not only identifies in detail what is wrong with hospital care for dementia patients, but also shares ideas for improvement.

I see that the nurses interviewed for this article were hospice nurses and from an academic setting. That is understandable. Maybe they could teach their colleagues in hospitals something about caring for persons with dementia.

it is getting harder and harder to find discounts on my mil perscriptions. I think its a shame that she is expected to pay 1459.00 for one medication at a 30 day supply. i spend atleast 3-5 hours a day looking for discounts and calling companies to see if there is help to pay. Hopefully we will get guardianship of her soon and she can be put on my husbands insurance and they will pay for the scripts. we have discussed the guardianship with her and she is in full agreement with us on it. but we still have to go to lawyers and get court dates and spend even more money on all of that. i just get so stressed about all the different costs of things. Its crazy . she has worked all her life and get retirement and her social security but still its not enough to pay for those perscriptions and lawyers even with the kids help . if she was on medicAID she would get everything free or close to it. but because she makes too much money they say . So sick of the system.