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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Tuesday, July 23, 2013

Invisible in the Medical System, Too

Washington DC
 
Several months ago, after reading this blog, Jim Landry emailed me.  He lives in the Washington area, and he, too, has early Alzheimer’s.  We got together, enjoyed a walk in the woods near our apartment, and promised to get back together.  A couple of weeks ago, Marja and I along with Jim and his wife, Nikki, went down to the annual Folk Life Festival on the National Mall.  We found much in common.  I was especially happy that Marja and Nikki—both spouses of men with cognitive impairment—could spend some time together. 

Several days ago, I received an email from Nikki informing me that Jim had had a bike accident, breaking a collar bone and several ribs—which can be very painful—and causing internal bleeding.  The bleeding was probably not serious but deserving a couple of days observation in the hospital.

Nikki wrote:
When medical professionals ask about medical conditions and medications, I tell them what he's on and that he has early onset Alzheimer’s.  There's a moment's pause as they take this in, ignore it, and carry on with what they were saying.  When I brought it up again yesterday (because they were expecting Jim to manage his own pain medication schedule and that wasn't working), the medical personnel overreacted in the other direction.  Now, Jim says, twenty people accompany him to the bathroom and he is being fed with a spoon!
The ignorance of what having Alzheimer’s means among medical professionals and how they should adjust their behavior is shocking and awfully frustrating.
The next day Nikki emailed me again:
I've had many conversations with the doctors, nurses, nurse supervisor, and social worker and they are all abysmally ignorant about how to treat and help a person with a cognitive disability like Alzheimer’s.
The numerical scale (1-10) for example, that they use as the standard protocol for determining pain level baffles Jim, especially when the pain is increasing.  Even the alternative scale of "happy faces" is difficult for him to answer at times.  Last night, he went from 12 midnight to 9 am with no pain medicine!  When I arrived, he was frantic with pain: it seemed to have crept up on his brain [unrecognized until it was severe], another symptom of Alzheimer’s.  We negotiated that he'll be given meds regularly without having to ask for them—with some extras he can get for breakthrough pain.  I plan to set an alarm to check on his status through the night.
The ignorance is shocking, but it’s also completely understandable to me as a physician because I know how little training medical people receive in recognizing and treating cognitive impairment.  We learn in our training to take care of the seriously demented but not to care for people with less severe levels of cognitive impairment, especially the early stages.

Let me guess what was going through the doctors’ minds:  Nikki tells them that Jim has Alzheimer’s.  They take one look at him sitting on the examining table, responding normally to their questions, looking like everybody else.  “Looks okay to me,” they tell themselves.  So they essentially ignore Nikki’s comment, perhaps not even mentioning it to the nurses.  Nothing is done to determine the level of Jim’s impairment and how his care needs to be tailored, because they aren’t skilled in it or perhaps don’t even recognize the need for it. 

Later, Jim has some difficulty with his medications.  Nikki explains again about the Alzheimer’s, and the nurses spring into the kinds of action they’ve been trained in: put the side rails up, accompany him everywhere, talk slowly in loud voices, spoon feed him, and all the other things they believe appropriate to a severely demented person.

As a person with early Alzheimer’s, Jim is invisible within the medical system.  Most of the nurses and doctors literally don’t know how to recognize him, much less care for him.  I don’t blame the individual medical people; they’ve not been trained, and they are subject to all the same constraints of fear and embarrassment as the rest of us.  Nevertheless, it’s simply bizarre that most medical people don’t know how to deal with a disease more common than heart disease and more common than all the cancers taken together.

28 comments:

  1. With all the discussion of Alzheimer's in the media, I'm surprised each hospital doesn't have a geriatrician on staff who is trained to guide the care of patients with dementia. At least half of the people in the hospital at any given time are geriatric? Kind of a no-brainer.

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    1. (I should acknowledge that I have been out of medical practice for twenty years and out of hospital practice for almost thirty, so my insight is not so much as an up-to-date doctor but as a person with medical training and some experience.) But to your comment: There are probably hospitals that DO have geriatricians. But someone has to be aware enough of the problem to call them in for consultation. If the problem is generally invisible, then they won't be called.

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  2. As a nurse, this deeply saddens and angers me... That the diagnosis was dismissed, that there was no evaluation done before they jumped in with their 'protocol' for dealing with Alzheimers patients...
    Aaaargh! So on behalf of THIS nurse, I'm so very sorry Nikki & Jim had to go through this.

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  3. When my partner, who is in the early stages of Vascular Dementia, has contact with medical professionals and they want him to tell them about his medications or when things have happened, even though he tells them that I speak for him, they ignore me and continue to ask him. What about "He can't remember" do they not understand? When I insist on talking to them they treat me with disdain. More education is need that is a fact.

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    1. I'm hoping that our increasing awareness can bring more education. Your experience, Alisa, deserves a special comment since the doctors are caught in something of a bind. One of the things that IS now taught is: "Listen to the patient. Don't act as if they're not there. Don't let the caregiver dominate the conversation if the patient can talk for himself, etc." That's all good and important advice. I don't know if your doctors were acting out of that or not, but if they were and they weren't aware of the degrees of Alzheimer's or how to recognize and accommodate it, they would have been doing a good job of following hat they HAVE been taught. Especially if it seems like the patient OUGHT to be able to remember (as we often do with early AD), the doctors can't make the switch to seeing the caregiver as the appropriate historian even when they're told by the patient himself. Catch-22.

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    2. Melinda7/25/2013

      The very best of my husband's doctors looked at HIM and talked to HIM and asked questions of HIM, but listened to ME also. It was a delicate play we were performing. I had to gently contradict my husband. The doctor had to carefully refrain from asking him, "Is that the real truth?"

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    3. Sounds like the kind of doctor I hope I was and would certainly like to have.

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  4. Thank you, David, for sharing this story from Nikki. It sounds very familiar to me, as I had to speak up for my mother many times over 8 years of caregiving with nurses, doctors, physical therapists, aides, etc., who seemed to ignore what I told them about her cognitive status (she had vascular dementia and probable Alzheimer's disease). Once, for example, she was sent to the E.R. after refusing to eat or drink for 24 hours, after throwing up at her assisted living facility, she could not remember feeling the pain she was in, so the hospital staff thought she was just dehydrated. Turns out her large intestine was flipped up, a rare occurrence, and her bowel was obstructed. I learned to stay at her side and speak for her, but as a caregiver I could have used someone else to take some shifts (I was her only family left), as it's exhausting physically and emotionally. I write about many of these scenes in my book "Inside the Dementia Epidemic: A Daughter's Memoir," hoping that our story can help overcome the stigma of dementia and educate those who work with people with dementia.

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  5. Anonymous7/24/2013

    My husband J. has Alzheimer's. He has a pacemaker and was assigned a cardiologist who seems to be terrified of dementia. Although he is also an internist, when I privately told him J. had memory loss he shot back angrily, "What am I supposed to do about that? He needs to see a neurologist!"

    So we got a different primary care physician, but kept Dr. D. as Jerry's cardiologist. Last time we saw him, Jerry went into the examining room alone to be checked out. After about 10 minutes, Dr. D. came out, red-faced and sputtering, and said to me, "Don'tyou ever let him come in without you again! He didn't know the names of all his medicines!" (Note: they were in the chart; I had listed them in writing previously). Then he added, "There was no communication possible. I felt like a veterinarian!"
    My husband is a man who still has social skills and can carry on a conversation for several minutes before anyone notices any disconnect. He has a sense of personal dignity and deserves to be treated with respect.
    The doctor coud have easily sent for me, as I was sitting in the waiting room. Instead, he just stopped trying to examine J. I kept wondering, what would he do if the patient were unconscious?

    Guess what: J. has a new cardiologist, a kind person who is not afraid of the word "dementia" or of a human being who has it. CP

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    1. I don't need to make any comments on the cardiologist's appalling behavior. But what your story, taken together with Jim's and others commenting here, is that those of us with AD fall somewhere along a long spectrum of progression AND our symptoms can vary even from others at the same place on the spectrum AND our own symptoms can vary from day-to-day, too. Yet it seems that too often we are treated as if we were either unimpaired or completely out of it. That we can't remember our medications may say almost nothing about our cognitive impairment yet we will be treated as if we were already seriously demented. I suspect very few health care professionals (unless they have cared for a relative with dementia) have much idea of this vast spectrum and the need to ask and listen to find out where the person is. As in your husband's case, it's a simple matter of respect and dignity. But it takes time and patience and there are a lot of health care professionals who may have little of either.

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  6. Doesn't sound like he would make a very good veterinarian either! My beloved grandmother went through similar situations before she died...my heart broke when she was being ignored/invisible and somehow it broke through her normal confusion. She looked at me with tears and said, "I am still a human!"

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  7. My pet peeve. really. I've worked in hospice, long term care, special care units, and med surge in hospitals. Back in the olden days, everybody used to say "people in nursing homes get bed sores all the time". People now are turned and repositioned every two hours, incontinent care given on rounds, etc. We'd send someone to the hospital and the hospital has no idea how to care for an elderly patient. They come back with bed sores. First of all, they put up the side rails (illegal in nursing homes in Iowa now). because falling off the bed is less dangerous than falling over the top of a side rail. the idea now is to pad the floor with a mattress, etc.

    I've sent people to the hospital that have severe physical contractures, we send their lift, their toileting chair, etc. and when I sent to visit, they were forcing her to pee the bed, then they would clean her up. they didn't want to bother with a lift to put her on the toilet because she was always continent. They put the same woman in her bed facing the wall. the TV was on the opposite wall. I asked her nurse to help me move her bed, "Why?" "Because then she can see the TV and her favorite show is Extreme Home Makeover". They don't bother to learn anything about any patient they have. When I worked med surge, I took the time to learn about the patient from family members, and asking the patient. When do you like your bath? Do you like to watch TV? Do they fall easily? Do they need a gait belt to walk to the bathroom? Can they use the call light? etc. If you don't know your patient, how can you care for them properly? This is a big pet peeve of mine, as I'm sure you can guess.

    One woman came to take her Dad home from the hospital, the nurse giving her discharge orders said, "Everything is looking fine, except for the dementia that he has." His daughter said, "Wait a minute. He doesn't have dementia. What are you talking about?" And refused to take him home. come to find out he had a UTI from a foley inserted, and got a bit strange because of the UTI. But they were willing to just let him go home to his house with a certain amount of dementia.

    My Mom, at 75 pounds after chemo and radiation was talking to the intake nurse at the hospital And the nurse said, "Have you always been this thin?" My Mom said yes. I was standing behind her and I started emphatically shaking my head no behind her back. So the nurse asked her again and againmy Mom said yes, she'd been this thin all her life. I finally said, "Mom, you used to weigh about 140 pounds until you got sick." Her answer? "Oh did I?" LOL

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    1. So we're not talking only about dementia but about everyone of us as we age.
      One of the things that Nikki did at the hospital was to check regularly on how Jim was doing and what he needed. And having a family member keep checking, checking, checking may be the only way we can make sure that our impaired loved-one is treated well. It also speaks to the importance of finding the right nursing home or Alzheimer's care unit.

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  8. As a nurse and Certified Dementia Trainer, I fully understand the ignorance that is out there concerning how to properly manage people with Alzheimer's disease.

    Because I understand the need for quality education, I dove into offering my services for training and as keynote speaker. But I am running into the same wall over and over again.

    No one wants to pay for my services, they want everything for free. Corporations will opt to pay for educational DVDs. However the best tool to deliver quality information and training is the physical presence of a person who can interact with the listeners.

    Although I do volunteer my services from time to time, this does not pay the bills.

    Until our health care system puts people ahead of profits, this level of ignorance will continue.

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    1. Wouldn't it be wonderful if all doctors-in-training had to take a course from someone who knew how to teach the care of people with dementia! I didn't know there were such people out there, but I sure hope you can find a way to keep at it professionally.

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    2. 6 months in a special care unit and the majority would understand, but the few that didn't, would realize the reasons they are in medicine in the first place--for the money.

      My first clinical in a med surge floor, my patient was one of the many dumped by the state of NY into the hospital, hoping to move these people (from the mental hospital) to nursing facilities. So they were dumped in the hospital for months at a time. My patient was shrieking in the hallway on a gurney. And I was horrified how was I ever going to take care of her? What if I upset her because I didn't know what to do (my instructors noted on my diploma that one of my main qualities is kindness). While standing there, getting report, listening to her shrieking, I was so upset. While getting report, the girl standing next to me said, "she's not shrieking, she's singing......in Italian.....about an Italian whore." I found out that day, she had been a bartender in a bar, and knew the best dirty jokes, the best dirty songs and would teach them to me during that day. So my assumption was totally wrong. I assumed she had no value. And I was taught a good lesson that she was one of the coolest patients I have ever had.

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    3. What a wonderful story, Lee Ann.

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  9. Some people you just can't teach. And you cannot teach empathy to someone without it. Here in my town at the hospital, we have some excellent GPs. They all have patients in long term care or in the unit. One of the doctors (behind his back we called him the cocky bastard), he went in to visit this married couple, alert, friendly nice people. It was Christmas and she offered him some christmas candy on his way out. He was all thankful and friendly, "Thanks a lot, it looks so good." We walked out of the room, and he immediately threw it all in the garbage. I said, "You know these two. I think anything from their room would be allright." He said, "I wouldn't eat anything in this God forsaken building by any of the old farts that live here." And he walked off. "Most" caregivers, doctors and nurses will at least try to understand. But there are always the few that will never care or try to see someone else's life. I never liked him at all after that.

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  10. The medical profession in the hospital should be paying your friend, instead of him paying a bill. I still find it hard to believe how people working in health care 'don't' understand an Alzheimer's/dementia patient. Oh... how much schooling they still need.
    I love the sentence: "We learn in our training to take care of the seriously demented but not to care for people with less severe levels of cognitive impairment, especially the early stages."
    I do hope people are 'not' still tied down, or given tranquilizers to calm them.

    Thank you and your friend for writing this.

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  11. jennifer7/26/2013

    wow, thank you thank you thank you...I fear the next time my husband has to go to hospital for that exact reason...

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  12. Anonymous7/26/2013

    thank you for this blog and reminding us health professionals how we should treat our patients, their families, and each other. Best of luck on your journey.

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  13. Thank you this blog of your journey. My hubby is at stage 5 and has never talked about it. He is in total denial. So I am trying to give him the best care I can but it is hard when he won't tell me what is going on. Now I can get some insight of what he has gone through from the beginning of this disease.

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  14. I could picture the difficulties that Jim was having. My dad probably does have pain from spinal stenosis. We know he did have pain from this before he was diagnosed with dementia. But now he can't tell us what hurts, or where, let alone rate it from 0 to 10! When asked what helps his pain, he answered "a hug"! which is true. We are fortunate this current Dr. treats us all (Dad, Mom and I) with respect and a sense of humor.
    It is distressing to us all that sometimes we don't know what else would help. And that pain medicine seems to mostly cause sedation and not relief.
    Helping Dad takes lots of patience and time, something in short supply in most medical situations.

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    1. Fromm what I've read in these comments and the private emails to me, if we all had much more patience and time, we could resolve most of the problems that people with dementia face. So much of it is the failure to understand what's actually going on in their consciousness. As you say, especially in medical situations, time and patience are in short supply, yet they may be the most potent treatment.

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  15. It's the best and the worst of being an Early Stage patient. We do go about our lives, can hold wonderful conversations and maintain a more or less normal life.

    The others don't usually see the times we can't remember something for as long as three seconds. The times we have practiced and practiced something and then under pressure, it's gone.

    I recently went to a new doctor. He was looking at my list of meds and asked why I was taking Aricept. Duh? Surely I heard wrong so I asked him to repeat . And so I answered and got the disbelief. An opportunity for education but so frustrating!

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    1. Mimi:
      Thanks for you comment. You're right, educating others about our disease will frequently be frustrating ... but, oh, so important. Thanks for making the effort to communicate with your doctor.

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  16. Anonymous7/29/2013

    My husband is a physician having done 20 years in private practice and 20 years at the University Hospital here in charge of the medicine clinics and training of 28 residents. He is in early AD and we are so grateful to David Hilfiker for this blog.

    You are right about the medical profession. We are fortunate to have a caring internist when he happens to be in town. I just got off the phone with a dear friend and former classmate who was in such distress because she could not reach the doctor. So I called Jerry at UMC and asked him to give her a call of reassurance (or advice to get to the hospital ASAP.). We are all in the 75 age bracket.

    We have purchased several copies of Healing the Wounds. Jerry will give them to his residents. The age of the country doctor is long gone and I am proud that Jerry was a kindred spirit of David's.

    Gerry Hubbell. Yes, we are Jerry and Gerry


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    1. Gerry:
      I'm reminded about pollsters who ask people about their trust in Congress and they couldn't think less of the institution. But when the pollsters ask about the person's own Congressman, they often think much more highly of him.
      For me, the take-home lesson is that there are quite a few wonderful doctors out there. People find those wonderful doctors and are so grateful.
      And yet a few bad personal experiences or stories from others makes one's own doctor seem a wonderful and extraordinary exception. There are more of them out there than we think. (I know a bunch of them.)

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