I agree w/this article! I am trying to get my husband who has dementia and other issues into a nursing home and doctor filled out paperwork saying he's fine and doesn't need it! My Jim "looks fine" but I live w/him and know what's going on. When I tell the doctor I realize I am ignored. Very upsetting.

Yes they are invisible if there is no $$$. Lets not forget that ALZ is a form of dementia, but in my experience patients with dementia (ALZ or not) are invisible. My husband has been lying in a bed for 6 months (I yr in the NH) he does not want to talk or contact with anybody, and he is not receiving any special care, therapy, whatever, except food and medications. Of course, he is on Medicaid, that is why he is invisible.

@pstiegman,
Would you consider posting the info on your mother's limitations and accommodations? Maybe edited for privacy, but enough to give us an idea of what to include?

I've had a similar experience when my husband had his colonoscopy last month. Fortunately they expect everyone to be sedated and a little dopey. If I had to describe his limitations, I guess I would say that he can't answer questions about his history, and he won't remember after-care instructions unless they are written down. At his stage, he is all too able to complain of pain!

haldol is often given to people to relieve the manifestation of schitzophrenia. it helped with my mothers paranoid delusions and phsycosis so effectively that even mother expressed appreciation for the medication. @ lindajoe, i suspect alz disease is causing the bad changes in your husband, not a particular drug.

I think the person meant to say Haldol.

What is "HELDO"?

Now, I am in a major depression, My husband is safe and happy, really, I am the one, falling through the cracks. Have a family, they help as much as they can, but this all happy in a peroid of one month. Home one day, in the hospital, next, on HELDO, acting like a child, a zombi, better to say, now a Alzheimers home, in a month and a half. I am lost, How does one handle something like this. Help

I can feel for nikki, my husband, was given HELDO, which turn him into a helpless child, took 4 weeks, to get the drug out of his system. He is better now, but the damage was done push him into Alzheimer, faster than it should have been.

Much gratitude for this article. My husband at 83 is certainly in a down slide agter being diagnosed eight years ago. We have managed very well and have had the strange and difficult position of being invisible. Our children althugh caring and loving have also done the 'he looks good to me' scenario. What is very surprising to me is that as Tom's dementia worsened and I requested hospice ( our doctors complied) eveny one thought and acts like it is the end. It may not be - we still do what his strength will allow - but we chose to not bring in nurses when we were in a crisis - Tom wanted to get to know them before he could not know them. We are building a relationship with our care givers before it is too late. We have had to replace a few here and there for exactly the reason your artcile states. Also the talking to me not both of us is a real challenge - yes it is difficult with the CI but dignity and respect need to be part of care training. We have chsen to do this at home and we are fotunate to be able to continue a few social and church activities - I think more couples could if medical communities prepared themselves better and supported the patient instead of reacting to the patient lack of symtoms.
God bless you all - TM

Dr. Hilfiker,
Thank you for this insightful article. How right you are about the way doctors and nurses deal with patients who have dementia/Alzheimer's. I just sent a response to a questionnaire sent by the Cleveland Clinic asking about the care my mother received there after her latest ER and hospital stay. I commented about how the doctors and nurses do not understand dementia and how it impacts the patient and what the patient experiences. Especially the pain issue. I took my mom to the ER with a new foot ulcer (due to peripheral vascular disease, non-diabetic) and a DVT. Previously she would have felt the pain from the ulcer and I am sure the DVT in her leg. But she did not complain to the caregivers at her AL facility and only through blind luck did I even realize she was having issues. So I wish the medical community would get their act together and learn what they need to about Alzheimer's and dementia. Another anecdote to think about: a very good friend of mine's MIL has dementia, and about 2 years ago she spilled a pot of boiling water on herself, burning her arms and stomach. No one realized she had hurt herself until a couple of days later! She never complained or told anyone that she had any pain or discomfort. If that is not a testament to the signals of pain being thwarted by dementia, I don't know what is.

I carry a spreadsheet with a list of medications, who prescribed them and the second sheet lists diagnoses and MD who handles it, a long list, including mom's limitations and needs for accommodations. The third page is a list of family members and contact numbers. This has proven extremely helpful at ER's, in ICU and MD offices, the nurses and receptionists love it, enter it, and mom gets better care. It also lets them know you are not an idiot and involved in all aspects.