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    As I've discussed, we're in crisis med adjustment mode, currently awaiting a move from regular hospital to geri-psych unit.

    Marilyn, in another thread, is thinking up fiblets Jean could use to obtain compliance.

    This made me think about how--on a regular hospital ward--you are not necessarily dealing with techs, nurses, etc, who are adept at handling AD.
    Two cases in point:
    Yesterday I was talking to Jeff who was (as is often a theme) fretting about how he "needed to get a job," (Jeff is terribly impaired and can't do anything, but you probably knew that.) So, I was telling Jeff that even though it's hard to get hired when you have Alzheimer's, (which he was aware he had, at least at that moment) they're working on a cure, and once they get it cured he can get a job, AND we can move anywhere we want, not the ALF. Well, distraction wasn't working right then.

    Anyway, at that moment I heard the sitter he had that morning (otherwise a very nice and helpful sitter) utter a clear throat noise. The kind of throat noise you make when you don't approve of what someone is saying. I guess she thought I was a perpetrator of false hope.

    Other case: Walking Jeff along the halls of the 5th floor today, we passed Nancy, who had been his sitter the day before. Nancy said "Remember me? What's my name?"
    Jeff obviously didn't remember her name and hemmed a bit. Nancy said, "It's a quiz!"
    At this point I just said "This is Nancy. Hi Nancy." And off we continued on our walk. I did not say "Nancy, don't quiz people with Alzheimer's."
    • CommentTimeApr 2nd 2012
    Shaking head sadly...I expect better from an Alzheimer's sitter!

    The hospital Lynn is in is quite good at fiblets.
    • CommentTimeApr 2nd 2012
    I think you have just hit a BIG nail on the head. Seems like alot of people in the medical field either don't know or just don't care and they want a person with AD to be talked to and treated like the average person
    How coould most of us gotten this far in this trip if we hadn't used fiblets and agreed with some of the most strange comments coming from our spouse.

    I wasn't going to post this because in the total scheme of things it is minor, but last week when I had my dh
    to the VA for his annual physical the doctor asked him if he would like to attend a quit smoking class. My dh said "what?"...He only smokes about 6 ciggies a day. I spoke up and said no, I don't think that is necessary. At this stage of the game I am to be concerned about his smoking?. First, doesn't the doctor know he wouldn't understand a word they were saying?? And, doesn't the doctor know he doesn't need any more stress in his life and neither do I? And, yes the doctor knows he can't drive and I am to take him to classes?? What was that doctor thinking?

    Next week he goes to see the nurse that keeps tract of his meds. I am going to mention to her if and when she is ever at a group meeting she might want to alert the others that questions to Alz. need to be considered in a different vain then when asking questions to another semi-well person. And, remember this is a terminal illiness and there certain things that we would almost rather our dh died from then Alz.
    So right, Judith! Dh's podiatrist wanted him to have the PAD test. I nixed that quickly. He wouldn't be able to follow directions for the test,- but if he did and he has it - what would they do about it? More meds? No, thanks.
    • CommentAuthorabby* 6/12
    • CommentTimeApr 2nd 2012 edited

    The last time H had a seizure at home I called 911. (After what I have learned on this forum I would never do that again as I now believe his transport and "treatment" only exacerbated his status.)

    Asked where I wanted him transported I said the local university hospital.

    The biggest mistake. What do they, or really any hospital outside of the one he was at in California where his seizure was "addressed" by others even do? They do nothing!

    Okay, and I still regret it- that I had him transported there rather than the primary hospital on his insurance plan.

    The reason for my regret was that he did not react well, especially to that more intense environment. For example, he was placed in a general icu but on the board in his room it was written "neuro service" which he did not understand when the personnel were introduced to him as icu. He had sitters because of his impulsive behaviors, mostly wanting to tear out tubes.

    I realize the sitters are mainly volunteers in one program or another. They mostly seemed interested in their text life.

    Nothing is perfect, but the sitters, no matter how imperfect did something I could not do- H would react to me emotionally, and not in a positive way. Whether or not he did that with the sitters- they didn't care. They treated him with an impartiality that I could not accomplish.

    Just my 02.

    PS H still often thinks he is a member of his previous profession. I'm sorry, I know how that than hurt.
    • CommentAuthorAnn*
    • CommentTimeApr 3rd 2012
    I myself would not woory about what the smokes were doing to him,I mean at this point.I would worry about him starting a fire.
    • CommentTimeApr 3rd 2012
    It would be very difficult to start a firee with a ciggie anymore. When you don't puff on them for a few seconds or a minute or two...they automatically go out. As I understand it that is why they have made the new ones like prevent people going to sleep and starting fires or if dropped it goes out before it can start a fire. My dh...never smokes in the house so I don't give it much concern and when he is sitting out on porch or patio I am with him most of the time. Fire is a very small concern.
    • CommentAuthorLFL
    • CommentTimeApr 3rd 2012
    emily hospital satys are difficult for both the person with AD and the spouse. Last August DH was admitted to the hospital for choking, seizures and aspiration pneumonia. His brain functions have never returned to the baseline he was at the day before the admission. Particularly his speech-never had a problem finding or saying words before the 7 day stay.

    I asked the head of nursing if I could stay days and the live-in aide we have could stay nights. She agreed. That way I knew someone who loved him would be there to care for him and most importantly advocate for him as every type of doctor (who didn't know him) came in and ascribed all of his symptoms, loss of speech, inability to get up on his own, etc to a sudden decline due to his dementia.

    DH was on a general medical floor but I did notice many of the patients were elderly (DH was 61) and probably were suffering from some form of dementia. 2 had sitters-1 man paced constantly...his family came at night to walk with him. The head nurse said if we hadn't stayed with DH she would have had to "hire" someone to stay with him 24/7. I believe they hire people they can get whether or not they are experienced with dealing with people who have dementia. Yes, they are detached. My advice is to report the sitters to the head nurse who is most likely responsible for hiring them and to the patient advocate/ombudsman at the hospital. I know, I know, just one more thing you have to do but perhaps you will save another family from experiencing what you did or possibly preventing a repeat should Jeff ever be in that facility again.
    • CommentTimeApr 3rd 2012
    Judith - each time my husband goes for his neuro or pcp visit (which is only for checkups) the nurse will ask if he would be interested in going to a healthy eating class to learn how to eat healthier and what exercises to do. This because he has gained a few pounds since his diagnosis (about 30 total I think - is up to 210 now). I immediately say no. Come on - I would at least expect the neurologist nurse to know it would be a waste of time. Just seems sometimes they don't stop and think.
    Yahoo...healthy eating class. Jeff can do nothing now and doesn't even know where he is. So I should make him eat "healthy" when his greatest pleasure remaining in life is chowing down on whatever food they put in front of him? No, I don't think I'll worry about that. I'm happy to butter up his roll and stick it in his hand.
    • CommentTimeApr 4th 2012 edited
    First off I must say I have linked up with a wonderful PCP who ‘gets it’. He is an internal medicine doc with studies in geriatrics. We changed health plans and on our first visit I suggested we needed a Neuro referral to deal with the AD. He said that since he did geriatrics he would like to try so I figured what would it hurt?

    He has had NO PROBLEM prescribing anything I ask for and signed all the many papers related to her condition without any problem. When we recently experienced Daycare failure related to crying, I emailed him asking for an additional med and he sent an electronic prescription that day and did not even ask for an office visit (saved the co-pay!) He has agreed to defer the PAPs and mammograms as being not necessary. So yes some medical folks get it :-)

    Others however need some additional training.

    At Daycare #1 (we only lasted 2 weeks - they do both health day care and dementia daycare) we were doing our intake interview with the RN and she asked if a couple of nursing students could sit in. No problem I love students! The RN from the daycare started going through her admitting form (do you have any heart problems, lung problems, diabetes, etc.) and I noticed she was directing each question to my wife(?) Who was correctly answering No to each question. (But when you are healthy except for the AD, it is easy)

    I let this go on for a little while until I decided to turn it into a teachable moment. I had already given a mini AD lecture to the students and determined that they had not covered dementia in their programs. So I turned to the students and said “Do you notice she is asking history questions to somebody who has no memory? Remember students, if you ever talk to an AD person, it is the caregiver who has the accurate information”

    The RN was floored! I could tell she was embarrassed. In her defense she was making an effort to include my wife and respect her humanity, but . . . . .
    So I followed up with how AD always affects two people and anything you do must include both the person and their caregiver, etc.

    Then at the support group this week one man was relating how upset his wife keeps becoming when he keeps asking her orientation questions. (Day, date, last food eaten etc.) We all kinda stopped and asked why he was tormenting his wife that way. He told us his neurologist told him he HAD to keep orienting his wife and only by constantly questioning her and ‘exercising her brain’ would she not decline any further(!)

    When I enrolled my wife into the new daycare (a dementia only program) the psychologist who runs the program was doing the intake was surprised at my wife’s age (61) and used the phrase ‘early onset’ for which I corrected her as ‘younger onset’ and explained how the opposite of early is ‘on time’ and there is no proper time for AD and how Dr. Alois’ original patient was 50 and to set a arbitrary age interferes with dx etc, etc.

    This Dr. did not want to agree with me and has suggested twice now that because of my wife’s (young) age she probably does not have AD but rather FTD.
    HUH?? Well, if she wants to test or examine my wife, go ahead, knock yourself out! (She hasn’t)

    I guess my point is that with so many misunderstandings among folks who should be the real experts in AD how can we expect much more from people who have never seen or worked with AD?
    My opinion is that the real experts on AD are the devoted caregivers who have lived it. There are a few professionals who understand the disease, but in comparison with the multitudes who suffer from it, it's a drop in the bucket. Unfortunately, if the medical/nursing schools include geriatrics in their curriculum, it's probably a cursory view--maybe 1 week. The University of Maryland grad schools have a mini mester course in geriatrics and they always include a session with dementia caregivers doing a presentation. I've been involved a few times and we got lots of thoughtful questions from the students.
    m-mman...good for you for using a "teachable moment."
    I'm often surprised at how many practitioners who deal with AD do not know of the Posterior Cortical Atrophy variant. I will grant that it's relatively rare, but it seems to me it would be helpful to understand the different ways damage can present.
    • CommentTimeApr 5th 2012
    emily - especially if they have a patient diagnosed with it. One would think they would educate themselves on the variant and if they don't have time, refer the patient to someone who does.