Thursday October 16, 2008

Some ramblings today —


Sometimes I just need people to validate me and my feelings. I was always taught to remind patients of reality and to keep them in reality. To tell them that they have dementia and that what they’re thinking isn’t true. Now I wonder. Is that really fair? What are we supposed to do when someone tells us that? Go in and switch the brain cells? To make the chemicals work differently in the brain? Some individuals can’t even comprehend what reality is. Why force them to accept reality?  Is that approach the most psychologically uplifting? If we could always be in reality we would. Most people don’t choose to not be in reality.


None the less, we are still people. We have feelings. We still have a mind and our own pride as individuals. I think it only feels worse to us when someone says “You’re demented.” In my case, I occasionally feel as though I’m still in California and that thought makes me happy. Is it fair to tell me otherwise at that moment when I can’t understand it anyhow? There aren’t always too many good feelings in life. Why just not tell me “Yes, it does feel good to be in California” and let me enjoy it for the moment? Or, when I wake up. Sometimes I feel very good and think I can go to work. Why burst my bubble by saying “No, you’re too sick.” Let me eventually figure it out that I am not able to go to work.


Lewy Body Disease Prognosis Facts


Þ      LBD is a disorder of relentless progression.


Þ      The rate of progression varies, and some investigators think

          that the progression is faster than that of AD.


Þ       Patients eventually die from complications of immobility, poor nutrition, and swallowing difficulties.


My response to these facts……..I will try to prove them wrong. I will fight and try to not give in. I will live a long life with a good mind!







If you vote, “It Depends,” please enter a comment explaining your thoughts. Thanks!


12 Responses

  1. Well, I think it IS the reality for that person sometimes. Shortly before my dad’s death, he would see papers on the floor. It was easier to pick them up than to quarrel with him. Those papers were his reality. I could move there with him for the moment.

    And I think it depends on the person, the responder and the circumstances.

  2. So, i voted it depends because I wouldn’t want to allow the patient to live in teh moment if it was going to cause him/her immediate harm to follow through with the believed plan/ability – if it was just a mind frame that wasn’t going to result in actions, than totally yes, let them live in the moment! Hope you are doing well David! I am really enjoying your blog

  3. My mother-in-law suffered from intermittent bouts of dementia due to emphysema. Often, during these periods she would think my husband was my father-in-law. More often than not, she would think that they were in their favorite restaurant having a glass of wine.
    My husband would roll with the flow and try to converse with her as his father would have. My mother was always happy during these phases.
    My sister-in-law would do just the opposite and try to bring my mother-in-law back to “reality”. She would find this confusing and upsetting.
    I always admired my husband for his willingness to sit with my mother-in-law during these times carrying her through her fantasy. He would say to me that he shouldn’t be credited, as it gave him great pleasure to see his mother able to escape the reality of her disease and be happy for those times. He thought at those moment, it was her “reality” and it was a good reality.

  4. I agree that many times it’s best to go with the flow and let the person believe what they want. If what they believe will potentially cause harm to them or to someone else then I think you have to try to bring them back to reality or distract them with something else. I think it also matter how firm the person is in their delusion. Sometimes I would try to “correct” my Mother and she seemed to appreciate it, but other times she would push back so I would just go with it.

    Another area for discussion would be the use of what a doctor called “therapeutic lying.” I have used it many times and not just with my Mother. One day at the nursing home one of the residents was upset over a car that had broken down. The aides tried to tell the person that they didn’t have a car, but that did work they kept asking. I told the person that all the car needed was an oil change and that had been done, so everything was OK. That seemed to reassure them and they quit asking at least while I was around.

  5. All the advice to caregivers I have seen says go with what the person believes as much as possible. I don’t look forward to that–honesty is very important to me.

    But consider any experience you may have with psychodrama. You may have been taught to always orient a patient, but in fact on a psychodynamic level there is much that can be done by going with the patient’s reality, validate their experience, and looking for the deeper truths there. Maybe we can think of it that way.

  6. I would not want to suggest my way is the right way. [Is there a right or wrong way?] However, one night some time ago, I heard my husband becoming rather loud during his sleep [??]. I questioned him as to what he needed and he told me, with a big smile, “Go on back to bed, I’m having fun with these guys” He was showing them the proper way to build a house. Sometimes I can bring him back to reality by serving his lunch tray, or a chocolate bar on a stick. If he is having a good time, why should I interrupt? What harm can be done? I can’t fix his brain and this does not make it any worse. No one else is truly in the room or house except the two of us. He has, on occasion, been visited by bad people and it is necessary for me to use medication to break that cycle. Each individual caregiver finds what is best. We love the mornings when he is lucid!

  7. Reality? What a question, and where do I start?

    First, one’s sense of reality (whatever that is) is based on one’s attention, perception, and comprehension, all of which are driven partly by prior experiences which allow us to attach meaning to what we are trying to comprehend. People with dementia can (but do not always) have troubles with any or all three.

    Secondly, I’ve never quite believed in one reality. There is only reality as perceived by this or that person. Sure, there is more or less consensus about what IS reality, but even that is SO culturally determined that the term is at best unreliable.

    So, let us take David’s situation. His intellect, age, education and insights as a psychiatrist must have made his sense of reality fairly solid — even if not normative. Psychiatrists are, by definition, not the norm.

    So, David, I would say that most of what is the basis of your perceived reality is very solid, most of the time. To tell you otherwise would be challenging your very self and your life experiences.

    BUT, there are times and circumstances in which you are not altogether attentive, do not perceive well, possibly misunderstand, disengage and act in ways not conducive to your own wellbeing or others.

    In those times, you need to be protected. Most of the time your misperceptions and conclusions can be corrected through new information and trusted advisors. And thank goodness you have them.

    I cannot believe I am going to admonish a psychiatrist, but I am. PLEASE do not oversimply such a complex issue. In the future, I, for one, will rely on you to challenge ANY either/or thinking with regard to working with people with dementia. — Most respectfully,


  8. It depends because some people may want continuity with the real world as experienced by people without LBD. However, I appreciate that ‘reality’ is a problematic concept.

  9. If it were a reality that said “I’m going to get up and go fly a plane”, no, I wouldn’t go with the flow, but I would try to redirect the flow.

    In many cases, perception is all the reality we have, so if the patient’s perception is not harming anyone, what is served by pointing out it is false to those around him or her? Being constantly told I was “wrong” would make me want to leave this current reality as soon as possible and get back to one where I was “right”.

  10. I believe that it would all depend on when the person is diagnosed with LBD. When my moms recieved her diagnosis, her mind was already forgetting many things. So telling her that she is not living in the moment would be wasted on her. While in her early statges of dementia, she was never left alone, so there was no worry for her hurting herself or others. Her hallucination (which came in the late stage) was of a man and a knife for the most part. But she did not fear the man. So I was not worried about it, I reassured her that the man would not harm her.

  11. When I was young, I thought I perceived reality perfectly and whenever people saw things differently from the way I did, there was something wrong with them. As I matured, I realized that (1) reality is multifaceted, and I never saw it from all sides, but not only that, (2) I didn’t always see it accurately from the sides I could see. The latter part was disconcerting, but I needed to learn the truth of it. I now love the old poem, “The Blind Men and the Elephant”.

    After my mom started seeing things that weren’t there, she was aware enough that she started figuring out they weren’t there, which was very helpful. It has enabled me to be able to help her much of the time to sort out things that aren’t as she perceives them, when they are harmful to her psychologically (like when she thinks my brother has been mean to her — he actually lives 700 miles from here, so it couldn’t have been him). But I can’t always help her sort things out. She has ongoing beliefs that there is some woman who torments her and wishes I could catch the woman and get rid of her.

    A few years ago, I had to get hearing aides, so I knew I couldn’t hear perfectly. Some of the things my husband and I have thought we heard each other say have been hilarious. Like the time he heard me say his “nudist cover card” had come in the mail. Or the time on the way to church I called him a “secret Bahai” and he heard “secret behind” and wondered why I was calling him an ass.

    Knowing our own perceptions are flawed helps me understand my mom’s. In addition to LBD, her hearing is very poor, and she has advanced macular degeneration in both eyes. Talk about misperceptions. She can’t see or hear well, then has a hard time decoding on top of that! No wonder when I take her out for a ride in town, she sees a fire hydrant and thinks it’s a wild animal, or a thinks a bunch of the little colored flags that are put up where underground cables are buried must be a flock of some kind of special bird. The latter happens often, because our town has so much construction, and it is always sad because she was an avid bird watcher, and she still wants so much to be able to see and identify birds. Now she usually can’t see the real ones but does “see” birds that aren’t there. I have learned to apologize for not seeing the “bird” she saw, because I was driving and had to keep my eyes on the road, and that satisfies her. She does believe me when I tell her the animal was a fire hydrant — that’s pretty important, because she would worry about seeing wolves or young bears in our neighborhood. Some birds are big enough she can see them fairly easily — sea gulls, Canada geese, ibis, etc., so I try to take her where she can see them, and that helps. We have fun driving around in our neighborhood watching the flocks of ibis graze.

    Two or three summers ago we were outside, and I was commenting on a little white fuzzy “woolly worm” dog that was walking past our house, and my mom suddenly felt like she had woolly worms crawling all over her. She demanded that I get them off. I tried my best to tell her there weren’t any, but she became angry and more agitated, so I finally picked the imaginary woolly worms off her, threw them on the ground, and ground them into oblivion with my foot. Then she was fine. Thankfully, that only happened once, but if it ever happens again, I know what to do.

    I’ve been rambling here, but the main thing I have discovered is to try to make her life as good as I can. She can’t handle complex explanations or complex logical arguments. She does understand love. I just thought of Paul’s words in 1 Corinthians 13. If I have all knowledge . . . but have not love, I am nothing . . . . We know in part . . . . The three biggies are faith, hope and love, and the greatest of these is love.

    Hope this helps.
    Linda Gurganus
    A hoosier farm girl transplanted in coastal North Carolina — never gonna be a southern belle — married to a southern gent who thinks I’m weird, but of course he’s the one who’s weird. We both teach math at UNCW — so most of the population would say we’re both weird. 🙂

  12. The word “correct” is a loaded word and to me a lot of times an objectionable word.

    Anyhow my dad also had lbd and about the last thing I would ever do is “correct” him. Even when his perception of reality wasn’t the same as my mine, who was to say my perception was “correct”. At the most I would distract/redirect him if it could be harmful or got to be annoying (futzing with the lock on the door) or if I didn’t want to participate in his reality (picking up thousands of fish eggs off the floor). Fortunately, he was almost always open to distraction/redirection but then he always was a reasonable man and didn’t always have to have it his way.

    What I observed was that attempts by others to “correct” him (especially towards the end) would “lock in” his perception of reality and towards the end it made him angry.

    For a couple years he really struggled to converse and a lot of times would just give up trying to complete his thought. I think in part because the ideas would float through so quickly and he would lose or forget where he was at in the conversation. And like a lot of us knew things weren’t “quite right” so stopped talking.

    A couple of months before he died, that self-edit of not talking was removed. We had free flowing conversations about people who he saw that I couldn’t see and his ever changing moments of reality. I didn’t always understand all of our conversations however there was always a thread of reality running through the conversations. During those conversations he was like his former self, enjoying life, telling stories, laughing, eyes sparkling and most of all he was present in the moment. This is the reality I will remember and treasure.

    So my parting question…is being “correct” really that important?

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