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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.

Friday, July 26, 2013

It’s Not Necessarily What It Seems

Washington DC
There have been many responses to my last post about Jim and Nikki’s experience at the hospital after Jim’s bike accident.  The emotional intensity of these comments has encouraged me to think a little more deeply about this disease.  Living with Alzheimer's is more complicated than I’ve thought.  Early dementia is not that easy to spot, and more advanced dementia may seem very different from day to day.  It can be difficult for other people to know what’s going on.

Jim’s impairment, for instance, is not obvious.  In the several hours I’ve spent with him, I’ve noticed only a little trouble word-finding that he compensates for easily.  When Nikki emailed me that Jim couldn’t manage his own pain medication schedule or even use a scale of one-to-ten to indicate his pain level, I was surprised.  I certainly wouldn’t have expected that this man—who seems so bright and energetic, who can ride his bicycle without getting lost, who can carry on a stimulating conversation for several hours—would have trouble communicating the severity of his pain.  If I’d been Jim’s doctor, what would I have done with Nikki’s warning about Jim’s Alzheimer's when he seemed so competent?  It’s a confounding disease

It’s problematic at the other end of the spectrum, too.  A person with much more advanced disease may seem quite impaired overall yet be quite intact in other specific areas, for instance, playing the piano.  Another patient, under the stress of a urinary tract infection or a hospitalization, may today seem completely confused about where he is or even who he is while tomorrow he’ll seem almost unimpaired.

The symptoms of Alzheimer's aren’t a smooth downward curve beginning at normal and descending to deeply impaired; they jump around in an almost random pattern.  The specifics of the impairment will be unpredictably different from one patient to the next or even from day-to-day in the same patient. 

What’s the take-home lesson for me?  I need to talk with family and friends often about my disease if I expect them to be able to respond appropriately to me.  My friends aren’t mind-readers; they need to be told as clearly as possible what I can and cannot do on any given day … and to be prepared for surprises. 

I can’t assume that even a good friend will know how to respond to me in any particular situation unless I keep them up-to-date on what’s going on.  And even then there may be miscommunication.  If I don’t talk about it, friends and family who expect a daily consistency will be confused and may begin to avoid me out of uncertainty or embarrassment.  If we intend to break the cycle of ignorance and isolation, we need to bring Alzheimer's out of the closet … over and over again.


  1. As someone who is just beginning my career in Nursing, discovering your blog has been amazing.
    Thank you to you and your other contributors, such as those in the last post, and the associated comments.
    Though we do get amazing teaching at my University, from a number of passionate lecturers, they cannot cover everything in the short space of time we are given. The stories shared here are an excellent reminder for us, to consider all patients as individuals, and to approach each new day afresh.

  2. Anonymous7/27/2013

    I had my husband go into resprite for the first time last week. Trying to get the staff to understand that he still could do a lot of things for himself....well I was just talking to a wall. He can still do all his personal care by himself, you just don't interrupt him. They wanted someone to be in the room when he had a shower and I had to really assert myself and say "no". He still understands what is going on would feel violated and I think unfaithful to me if a female staff was in the room while he showered. I worked with adults that are intellectually challenged for now 40 years and to try and teach staff to respect peoples personal boundaries what ever they maybe was/is really tough. A lot think that when someone has a challenge they then become a subperson and that is not how it is. The well spouse has to be or become a very strong advocate for their spouse.

    1. These are excellent examples of a person seeming to be very advanced in some aspects of his disease yet still quite competent in others The other implication of what you say, is that the person with AD needs to be given plenty of time to get them done. This may be frustrating and inefficient for the staff, but -- given the importance of a person feeling personal agency in his life -- it's a very important issue.

    2. The other thing I learned and this is for your wife's info is watch how much meds you get put on. Doctors have a habit if a little is good more is better with this disease. I have given him what was prescribed for aggression and found it is too much and I couldn't handle and care for him. Too big of a man for me to move by myself. I cut back on his meds and he was good. It's all about quality of life. Thank you for this blog.

  3. Yes, one of the things I regret about my early years caring for my mother with dementia is that I assumed that she had become fully childlike as soon as she could no longer live alone, balance her checkbook, or cook a meal. How quickly I was ready to step in and "take over" as her daughter, when really she was still in the early stages of dementia and capable of much more than I gave her credit for. If only my mother had had a blog like yours to read, she might have felt less alone, and might have been able to talk to me more about how she was feeling living with dementia. But when she came to live with me in 2005 neither of us were online (me, only at work), and only I had a live caregiver support group to go to (through my Office for the Aging; there are still no support groups or Alzheimer's Cafes in our area for people with early-stage dementia). When she moved into assisted living, she got zero emotional support from the staff to live with dementia (and they often seemed perplexed about how to keep her engaged). Only when Mom moved into a private-pay "memory care" facility--and I learned more on my own about dementia--did she seem to be around people who truly understood dementia, and how, as you point out, it can vary from day to day and hour to hour.

    I wholeheartedly agree with you that "If we intend to break the cycle of ignorance and isolation, we need to bring Alzheimer's out of the closet … over and over again." It shouldn't be only those who work in memory care facilities who understand dementia--it should be all doctors, nurses, therapists, nursing home staff, home care aides, hospice workers, etc. One third of seniors will die with Alzheimer's disease or another dementia. Most of us will know someone with dementia, or be a caregiver for a loved one or friend with dementia. We all need to know more about what it's like to live with dementia, and your blog is helping us to do that. Thank you.

    --author, "Inside the Dementia Epidemic: A Daughter's Memoir"

  4. Anonymous7/28/2013

    In response to your last entry: When my husband still had beginning AD and had back surgery, his level of AD was compromised. He advanced to late middle stage AD. He was completely confused, needed help with his ADLs, became incontinent, couldn't be left alone. I was told that this was the result of the anesthetic and sometimes this was permanent. Fortunately, he gradually improved over a few months.
    This same situation occurs whenever he has a fever, even a slight one. Evidently this is the same pattern for those with AD. The brain is sensitive. Our AD doctor told me that their brains don't do well with heat or anesthetic. Perhaps your friend was having this problem and being in an unfamiliar place was adding to his confusion.

  5. You're making an important point. Psycho-active drugs (like pain medications, tranquilizers, sleeping medications, and others) can all exacerbate the symptoms of Alzheimer's. fortunately, these effects are usually temporary. Just being in the hospital can disorient unimpaired people; it's that much worse when there are illnesses and medications piled on top.

  6. Doc, you're going to have to change the name of your blog from "Watching the Lights go out." to "going to continue to do what I do until I think I need to watch the lights go out." You are living with this, not dying with it. There are a lot of people that die from something totally unrelated to their cognition. So you are living with AD, not waiting with AD.


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