Living with Mild Cognitive Impairment (MCI)

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Tue, Jun 25 8:55am

Repost: How Big was that Fish?

By Dr. Melanie Chandler, HABIT FL Director, @drmelaniechandler

Big FishThis week I wanted to repost a great article Dr. Shandera did last year about confabulation with memory loss, or the brain "making up information" that is not true when the real memory is not there.  I think it is so important for our relationships with someone with memory loss to understand the difference between willful "lying" and neurologic confabulation.  Thanks Dr. Shandera!

The original link is here.

How Big was that Fish?  When Memory Loss Changes the Story

Mild Cognitive Impairment (MCI) often affects memory. When memory fails, the brain sometimes compensates by attempting to fill in the gaps on its own. The technical term for this is confabulation. Confabulation might be the creation of “memories” for discussions or events that never actually happened, or it might be a distortion or elaboration of things that did happen. Sometimes, the confabulated story sounds very reasonable, while other times the gaps get filled in with outlandish or bizarre content.

Isn’t that lying?

Confabulation is not the same as lying. The person with memory loss truly believes what he or she is saying, as it feels like a real memory. The process happens automatically. For those close to the person with MCI, confabulation can be surprising or even scary at first. Spouses or adult children may feel embarrassed when it is obvious to others that the person with MCI is saying something that is not true. The person with MCI, in turn, may feel angry or humiliated when a family member corrects his or her version of a story.

Some examples

Sometimes, confabulation is a mix of what the person with MCI has seen or heard in “real life.” It might be triggered by reading a story in the newspaper or watching a program on television. Imagine this scene: Gene has Mild Cognitive Impairment. Gene and his wife, Marge, are watching a television nature program about sharks, and shark attacks on humans. The next day, Marge overhears her husband on the telephone with their daughter, explaining that they cannot come to visit her in Florida as planned because last time they were there they were attacked by a shark.

Other times, confabulation happens when a situation does not make sense to the person with MCI due to memory difficulty. For example, Irene recently had to change the passcode for her cell phone. However, she forgot she did this, and now she keeps getting locked out of her phone for repeatedly typing in the wrong code. Her brain may try to help fill in the gap in her memory by coming up with the explanation that someone came into her apartment and changed the passcode for her cell phone. She may start to repeat this story to anyone who will listen, and will likely feel upset about it.

What helps

  • Don’t argue. This is unlikely to result in anything more than frustration on both sides. Remember, for the person with MCI, this feels like a real memory.
  • Try re-orienting to reality. If a confabulated story sticks around and seems upsetting to the person with MCI, loved ones may try to gently present another explanation. This is where a memory notebook system can really come in handy. In the case of Irene, her husband could show her where she made a note of her new passcode in her notebook – “maybe you changed it? Let’s look in your notebook together to see if that’s what happened.” Stay neutral and helpful, be an ally. Avoid statements that put the person with MCI on the defense, such as “I bet you forgot” or “That’s not what happened, how many times do I have to remind you?”
  • Wait and see. For example, when Gene told his daughter they’d have to cancel their trip to see her because of the shark attack, his wife and daughter might say “okay, good point, we can get together another time.” Then, a few days later, his wife might try bringing up the trip again, to see how Gene responds. Sometimes the confabulation is forgotten soon afterward, and there’s no need to do anything about it.
  • Just go with it. Sometimes, a confabulated story sticks around, and there’s not much you can do about it. If it’s upsetting to the person with MCI, just nod your head, and provide reassurance and validation of the feelings he or she is experiencing. “I know the situation with your cell phone is so frustrating, I’m sorry that happened.” Then change the subject and redirect the conversation.

Chime in! What tricks and tips have you used to help cope with confabulation?

 

I could not cope with confabulation because I thought it was deliberate for many years, but finally accepted it as dementia. However my late husband was never diagnosed because no one would believe there was a problem, even the doctors. Finally I took on the policy of listening to his wild tale and then saying, "I am going to leave the room now. I have to do something." He seemed to accept that and would be smiling at the thought that he was winnl\ing at a game he was playing with me. He would try again the next day with another wild tale and seemed to enjoy it when he made me angry, so I stopped showing any emotion as a result of his efforts. Once I screamed at him in frustration because he wouldn't quit and I begged him to stop telling me stories. he enjoyed seeing me upset so I never did that again. One particular wild lie stuck in his memory and he would bring it up again months later, reminding me that the event really happened and I was wrong to think otherwise. I ignored him and let it go, daily, month after month, until his cancer took over his body and killed him in short order. He was paralyzed for six weeks and told everyone he injured his back and was having therapy. He died in complete denial, never reconciling with me as a husband, and I was left to recover from total devastation from a dysfunctional marriage. I am doing well and practicing forgiveness.
Dorisena

COMMENT

Everyone needs to understand how difficult it is to share stories from a life where no one believes your reality of events, and cannot grasp the fact that there is terrible mental illness going on and it will only get worse. Thirteen years after my husband's death I must be careful to not reveal real events that would cause my friends to not believe me, as they only believe what they thought they were seeing from my husband's stories. He blamed me for all his problems and gave a negative view of me whenever possible, as a couple of friends have admitted this to me since he died. I have studied many years to accept the complexity of the illness and to accept the fact that there was nothing anyone could do except to perhaps lock him up when the situation became unsafe.
Even my own family would not believe that I was unsafe at times. A close relative will not believe to this day that my husband was going nuts. She says I should have asked her for help in resolving the issues between us. She fought with her husband for years and was not someone with the skills for that!
Psychopathy is the most difficult condition I have ever attempted to understand, but I still study in order to be able to forgive and live in peace. Dorisena

COMMENT

I also understand that controlling people who fight with their spouses for years, can suddenly become very nice people after the spouse dies, because they "won" any disagreements permanently, and winning at all costs is the name of the game, according to a psychiatrist who counseled me briefly. If you can recognize that winning is everything to some people, at any cost to the relationship, and it must happen often if they are to feed their obsessive nature, then you can address dementia early on by not trying to reason or resolve any issues, but to merely step away as the professional nurses do in facilities where the patient is being unreasonable. I learned this idea from them. Eliminate the emotion, the drama, the hope for reconciliation, and leave the room because there is work to do elsewhere. This trick works more often than not, and I wish more people could get the hang of it. But no, I cried through the six years of my mother's stay in the nursing home after her bleeding stroke in her brain. She could never understand or forgive me for not taking her home to care for her.
I could not lift her, manage her care, and keep her safe and secure. I had to give the job to the professionals. In the beginning, with MCI, strategies must be planned and carried out for reasonable care for the provider's well being as well as respect for the declining person. It is a family effort that must prevail.
You must begin to see yourself as a caregiver, not particularly a spouse, and you must have respite care yourself. It is no a fun life. It will end some day and you will want to know that you did the loving thing and did not contribute to making matters worse. Dorisena

COMMENT
@dorisena

I also understand that controlling people who fight with their spouses for years, can suddenly become very nice people after the spouse dies, because they "won" any disagreements permanently, and winning at all costs is the name of the game, according to a psychiatrist who counseled me briefly. If you can recognize that winning is everything to some people, at any cost to the relationship, and it must happen often if they are to feed their obsessive nature, then you can address dementia early on by not trying to reason or resolve any issues, but to merely step away as the professional nurses do in facilities where the patient is being unreasonable. I learned this idea from them. Eliminate the emotion, the drama, the hope for reconciliation, and leave the room because there is work to do elsewhere. This trick works more often than not, and I wish more people could get the hang of it. But no, I cried through the six years of my mother's stay in the nursing home after her bleeding stroke in her brain. She could never understand or forgive me for not taking her home to care for her.
I could not lift her, manage her care, and keep her safe and secure. I had to give the job to the professionals. In the beginning, with MCI, strategies must be planned and carried out for reasonable care for the provider's well being as well as respect for the declining person. It is a family effort that must prevail.
You must begin to see yourself as a caregiver, not particularly a spouse, and you must have respite care yourself. It is no a fun life. It will end some day and you will want to know that you did the loving thing and did not contribute to making matters worse. Dorisena

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@dorisena – good tip on avoiding becoming engaged in an argument and learning to "step away" in those situations. Sounds like you've encountered more than your fair share of challenging caregiving situations. Thank you for sharing your experiences with others!

COMMENT
@dranneshanderaochsner

@dorisena – good tip on avoiding becoming engaged in an argument and learning to "step away" in those situations. Sounds like you've encountered more than your fair share of challenging caregiving situations. Thank you for sharing your experiences with others!

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Thank you to everyone for you kind words of support. I never was much of a care giver because my belligerent husband did not allow anyone to care for him. So the only satisfaction I could feel was in sharing helpful hints with others in the same boat who don't know what to do to make the day tolerable, let alone better. Then I don't feel like I failed in the end. I tried. Now I want to help others when I can. Dorisena

COMMENT
@dorisena

Thank you to everyone for you kind words of support. I never was much of a care giver because my belligerent husband did not allow anyone to care for him. So the only satisfaction I could feel was in sharing helpful hints with others in the same boat who don't know what to do to make the day tolerable, let alone better. Then I don't feel like I failed in the end. I tried. Now I want to help others when I can. Dorisena

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Your focus on helping others is greatly appreciated and will undoubtedly help with your healing.

COMMENT
@ozarkian

Your focus on helping others is greatly appreciated and will undoubtedly help with your healing.

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Hello, @ozarkian – I appreciate your kind words for @dorisena. Wanted to find out if you or someone you care about may have been diagnosed with mild cognitive impairment?

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