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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.

Saturday, August 24, 2013


Washington DC
In response to my last post on people unable to recognize their cognitive impairment (anosognosia), one reader described the dilemma of wanting “to include in social settings a loved one who demonstrates anosognosia about [his] cognitive impairment.”  I have gone ahead, she says, and “confidentially shared with a few folks in my Christian community, yet am uncomfortable with others knowing something my loved one doesn't about himself. Yet if I don't share, then I am worried others won't know how to lovingly respond to him.”

It is, I suspect, a common dilemma.  The problem arises most seriously in the issue of driving.  (I’ve explored the issue in other posts, but anosognosia significantly complicates the problem.)  There are at least two sets of issues: first, the practical ones that will arise if he finds out that you have spread what he considers a lie about him and, second (and much more difficult) the feelings you may have of having “betrayed” him.  I have a couple of thoughts, but I would certainly welcome comments from those who have faced the problem.

First, would arranging to have his license taken away or even letting other people know about his diagnosis be a “betrayal” of the person you love?  I don’t think so.  The person you love is now different in an important way from the person he has been: He can no longer recognize reality and act appropriately.  Remember, anosognosia is an injury to the brain that makes him incapable of recognizing his impairment.  He doesn’t have the capacity to make a good judgment about himself.  You must do it because he can’t.  The only real question is whether in any particular instance the choice is actually a loving response, done in the best interests of everyone.  Fulfilling your responsibility in a loving manner cannot be betrayal … regardless of what the patient feels and believes, regardless even of what you feel.

Second, a dangerous driver must not be allowed to continue driving.  Period.  That outweighs any other consideration, including any of his feelings that you have betrayed him and any of yours.  If the patient will not stop on his own, someone has to interfere and make it happen, even if it requires informing the authorities.  This doesn’t have to be the caregiver directly, but if no one else does it, the caregiver must at least arrange for it to happen, perhaps by asking someone else to make the call.

The issue of whether to inform friends is obviously much more ambiguous because no one is directly in danger of injury.  As any regular reader of this blog will know, I believe strongly in telling other people about one’s own diagnosis (see here and here).  I assume that friends who are at all close will have already noticed the symptoms or will soon.  Discussing the disease frankly will probably decrease embarrassment and isolation.  But the choice to let other people know might appropriately be outweighed by the likely consequences (if he finds out) or even by one’s feelings of betrayal. 

Another possibility, however, would be to determine whether the friends already know something is going on.  If they do, you might tell them about the physical nature of anosognosia over which no one has any control.  This doesn’t give them any new information about your loved one (the friend already knows) but it does add objective information that may help in any given situation.

If I were a caregiver, I think I would probably tell a trusted small circle of friends, not so much to help them but to help me in dealing with a difficult situation.  My loved one might reasonably expect me to keep confidential his problem but not to keep me from getting the help I need.

Don’t forget that the nature of progressive dementia is that the caregiver has gradually to take over more and more of the decision making (and lots else) that the patient has always done.  You might as well get used to it early.

These are only my thoughts, however.  Some of you readers will have certainly faced these questions.  What do you think?


  1. [I'm re-inserting a comment from the last post because it seems particularly relevant here. - David]

    I could write a post-length comment on this. :-)

    I hold POA (power of attorney) for my caree, but am not her legal guardian; she is still able to perform her ADLs (activities of daily living). However, she is delusional and at times paranoid, in addition to having anosognosia. Bottom line: I have limited legal authority, but I resort to work-arounds however I can to try to get her the care she needs. I'll give two examples.

    1. After a recent endoscopy, she became convinced that a secret gastric bypass had been performed on her. Her speech is tangential as it is, so I often translate to doctors; this can agitate her because she wants to tell them, herself. Behind her back, I gave the gastroenterologist reports from neurologists attesting to her cognitive disorder. (I use my POA to get as much documentation as I can, which I then scan into my computer to have handy.)

    2. Last winter, my caree insisted on using a cooking coil as a space heater. She is also a hoarder, so this presented a serious safety issue. After approaching both the health department and the fire department, I finally got help in the form of peer pressure from our MS support group. My caree was furious at me for "airing our dirty laundry" when I spoke up. (There have been significant issues when I have actually removed anything of hers from the premises.)

    Health and safety issues are my first priority for disclosure. I take social settings on a case by case basis with an eye toward decreasing our isolation however I can, especially because my caree is mostly housebound.

    I am also active on, where we share these and similar experiences. The site is an extraordinary resource and a terrific grassroots community. I write there under a pseudonym, which lets me preserve to some degree my caree's privacy while expressing what I need to express.

  2. So much of what you have recently written recalls my father's last days. I am the only child to live out of town, so saw him less regularly than the physically closer family members. Perhaps that's why I noticed some cognitive problems along with the physical downward spiral that I guess is anticipated in someone in their 90's. The hardest thing for me was that my siblings and mother couldn't/didn't see it, and got angry if I was too aggressive in conversations about it. Luckily there was no danger physically, as he had full-time assistance, but it was still very hard to feel that either I was way too critical (a tendency I have) or just plain wrong. It's a fine line to try to walk, letting the person be as independent as is reasonable while dealing realistically with the ever-worsening problems. The only thing I found to be even slightly helpful was to remind myself many times that loving someone when it's easy is no great task; it's when it becomes really difficult that one can see who is loved more, oneself or the other.

    1. It seems to me also a very fine line. At what point does the "truth" become irrelevant to the particular situation? When does the emotional uproar around the "truth" outweigh its practical value? How much danger am I willing to allow someone who is cognitively impaired to put himself into so that he retains some sense of agency (but may seriously hurt himself)? They're all extremely difficult and important questions.

  3. I once worked taking call for a home health agency on weekends. One couple that I knew were pretty easy to care for, so instead of calling everybody hoping someone would go, I sometimes just went myself. One time I walked in the house, and the daughter on the way out, whispered to me, "Whatever you do, don't remind Daddy that his birthday is next week. We want him to forget he has to get his license renewed." Because in Colorado, if you forget to get it renewed, you have to take the entire test and driving test to get it renewed again. An old cattle rancher, he was as stubborn as he could be.

    The caregiver needs to have a support system of family or friends to get through these trials. If you don't tell someone, you don't get the support you need. That's one reason caregivers get so burned out, they have no one to ask for help. A large support system will really help the caregiver. So don't feel like a traitor asking for someone to be a support.

  4. The blogpost is interesting and positive, I do have to take issue with the following sentence: "Second, a dangerous driver must not be allowed to continue driving". This should be listed as first, society has to be safe from an incompetent driver and emotions shall not interfere.

  5. My husband is very aware of his memory problems. However, we've both agreed that we're not going to seek a diagnosis until after December when he's eligible for long term care insurance through his retirement system. They've not had open enrollment for five years. This will be our first and only opportunity. In the meantime, we've set an alarm on his phone (if he remembers to carry it) to tell him when it's time to take his medicine, but he drives one back road mile from our home to his golf course. His golf buddies keep him in stead -- they each have problems too. I insist on driving when we go other places because he's become slightly aggressive on the road and it bothers me. We talk openly and honestly about these issues, but still, without any sort of diagnosis, my husband feels healthy. As I said, it's a fine and delicate dance as a caregiver.

    1. Long-term care insurance is very important to a patient with dementia and his family. The costs of long-term care can completely bankrupt even an affluent family. Cynic about insurance companies that I am, I would not be at all surprised if, at some point, the insurance companies tighten up and begin assigning a date when the disease actually started or when one "should have known" and make many cases of Alzheimer's into non-covered "pre-existing conditions" even though a person doesn't yet have diagnosis or doesn't recognize symptoms.
      The line beyond which one should drive is also ambiguous. Since people can't evaluate their own abilities, driving tests (although still not very sensitive) every six months might be a way of hardening the line. The question becomes all the more difficult as people get diagnosed earlier and earlier.

    2. My husband was officially diagnosed over a month ago with Alzheimer's He never heard the doctors diagnose, he only heard that he will lose his divers license. Yesterday we received a packet from the California department of motor vehicles It has forms to be filled out by my husband about his disease plus forms to be filled out by his doctor. He thinks he got the forms because he is 80 years old. He doesn't remember that he has Alzheimer's. Or is his in denial? I don't know if he should be driving. He can't find any place different than our three regular places. I go with him and act as a navigator. He is aggressive and gets agitated. I am a nervous wreck when we get to our destination. I have told a few friends about his Alzheimer's I get support from them and a release from my frustration. I don't know how he would react if a friend said something about his Alzheimer's.

    3. Anonymous8/26/2013

      I have the same situation here. I am the navigator while he drives. So far, he has not forgotten the way to his work and thankfully, he will retire on Dec 31.

      With all of my anxiety about his driving, I find that I have had to quit driving myself because of my spinal stenosis which now causes my legs to have spasms. I cannot trust my leg to reach the brakes pedal in case of emergency. Fortunately, our son lives only five minutes away so he has been driving me to my appointments.

      So my anxiety about the future has been replaced by the reality of the present. We will consult a neurosurgeon about my condition. We both were negative about surgery, but it seems necessary now.

      I am very fortunate that Jerry is fully aware and cognizant of his dementia and that we have faced this together along with our son and daughter.
      We are especially grateful to David for this blog which has become my "big book" of information and comfort.


    4. Responding to Rita above, I'm inferring that your husband never heard from his doctors that he has Alzheimer's. This would be a major oversight on the part of the doctor, and I believe someone should arrange for another visit and insist on hearing the news from an official source. It's hard to diagnose denial if you aren't sure the person knows his diagnosis of cognitive impairment. At the same time if he is an agitated and aggressive driver, I would push him not to drive, even if he passes his driving test.
      I'd make the same response to you, Gerrygirl. If having to be his navigator is a new requirement to his driving safely and if, like Rita's husband, he is agitated and aggressive, he should not be driving.

  6. Anonymous8/26/2013

    For us, the driving issue was not that hard because my husband accepts his disease just like one would have to accept any other disease. He decided himself to stop driving. I think it was empowering for this to be his own decision. I cannot imagine how tough this would be on a caregiver to have to impose the no-more-driving edict.

  7. Anonymous8/29/2013

    My husband was diagnosed with early onset Alzheimer's almost two years ago at the age of 68. Giving up his driving privileges was made easier because his neurologist report the diagnoses to the DMV in New Jersey. There was no choice to be made. I was able to assure him that I would take him wherever he needed to go. When the bank came to take away his car I was the one that cried. He condition has deteriorted since then and he attends an adult day care center in the town where we live. The words that were used by another about the lights going out is so profound because that is what I see. The chain on our front and back doors is a metaphor for our lives right now, "a prison", but after 47 years of marriage I will be there for him and try to keep him safe. The term I use for my feelings is "scared to death" that I won't be able to handle him as things get progressively worse, because he does not or will not acknowledge his illness.

    1. We need to tell our stories. Thank you for one of yours.
      I hope that you have found a caregivers support group (or some other form of regular support) in your area. (You can find one in your area at the Alzheimer's Assoc. If you are scared to death, you can be helped, I think, by the chance to share you journey with those who have gone before you.


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