How Do I Respond?

larryeny

When my Mom claims and insists that there are two of me or that I am not her son? If I respond in the way that would generally be considered "proper" by the "dementia authorities", I should kind of play along with it. But if I do that, I am giving her false information and starting a line of conversation that I don't know where it will go and how much lying I am going to have to do or how much stuff I'm going to have to fabricate.

To be honest, the thing that had worked best in the past is to tell her that she's confused and that she's sundowning and that based on prior experience, she shouldn't try to reason any of this through because she'll feel better in the morning.Yet, I'm told that this is a major violation of dealing with dementia patients as you do not tell them what is wrong with them.

Distractions like TV or reading or music are of no value because she's meniacally focused on trying to figure out how I could possibly be her son.

How does one deal with this?

Larry

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larryeny

Victoria2020 wrote:

Hi larryeny

Brief responses and some humor  "Two of me? Wow maybe the other  Larry  ate the rest of the vanilla ice cream? Want to have some of the strawberry he left us?" 

She can't understand the framework, her disease , so keeping the topic calm and moving it along  is the best.

We know it is uncomfortable and feels like "lying" so we call it "fiblets" untruths said solely for the patient's calmness and comfort. Yeah if you invented a whole life for Larry 2.0 you'd get tangled up so keep it simple and try to get her to respond on a topic, like ice cream, where she won't have confusion.

In the spouses thread are some examples, of conversations about  this, some rather funny (who doesn't need some humor) where spouses got asked who they were and the responses.

Some days you may not be Larry or even Larry 2  to your Mom but "that nice man"  and that warm feeling she has is what will have to work that day for you.  I believe our loved  one's hearts know us , they just may not be able to express it with their impacted brain. 

Thank you Victoria for your wisdom and help. I'm afraid I'm just not that clever to be able to come up with witty retorts like that. I will take a look at the spouses forum and will try to have a couple "on hand". But I think what will happen if I come up with something like "That must be who ate all the chocolate ice cream", she will respond with "Seriously! Come on! How could you be Larry?" (based on prior experience when I have tried to deflect using humor or trying to deflect).

Quite honestly, I tried just accepting her statement that there were two of us, and it didn't work. Then, I just used my goto which is "Remember I explained what Sundowning is and that it gets worse at night? If I were you, I'd try not to continue to figure out what's going on because it's only going to frustrate and agitate you and you know that with sundowning, you will feel better in the morning". And it worked much better. She actually said to me in response "You're right". And she's been much calmer over the past 30-60 minutes.

I'm trying to take the advice and recommendations here. And I did start to listen to the videos that someone provided.

star26

If telling her the truth works, then by all means do it. The only reason it’s suggested to not tell the truth is because it often (not always) can cause the person with dementia to become argumentative or more agitated etc if they are really stuck in a delusion and don’t believe what you are saying. But your Mom has some awareness of her deficits and many people with dementia don’t. Sometimes when my Dad was sundowning and/or calmly confused I could say something like “You’re a little mixed up right now. I think you're sleepy.” and he’d respond with “Maybe you’re right” and let his concern go. Other times I knew better than to say anything like that because it would have inflamed the situation. Like your Mom, my Dad had some awareness that something wasn’t right in his head. 

jfkoc

So the goal is to not escalate. I think it is always good to at least validate what she has said. "Oh there are two of me....hmm" is a simple validation as is well who am I. I never was clever but I could restate what my husband said and somehow the fact that I heard him was calming.

ADDED; there were times that we both were carried on a flight of fantasy...wasn't all bad. Rather like being at a little girls tea party.

Iris L.

Sometimes a PWD will remember her child but from a younger age.  She may not recognize the mature Larry.  

Iris

May flowers

star26, your post resonated with me. My FIL at one point knew something wasn’t quite right and we reason with him that he was tired or confused and he would agree. That was last year. Now, no matter what we say or how we redirect, he continues to insist he is right and we just have to drop it.

Fortunately, he is very swayed by food and if we hand him a cookie or bowl of popcorn, that ends the discussion right there.

I’ve noticed that escalating  for him doesn’t result in outbursts or combativeness, but pouting. He will sit and glare at us or go to his room and not want to come out all day. I wonder if that is a precursor to violent outbursts or if this will be his way of coping with things that bother him.

larryeny

jfkoc wrote:

So the goal is to not escalate. I think it is always good to at least validate what she has said. "Oh there are two of me....hmm" is a simple validation as is well who am I. I never was clever but I could restate what my husband said and somehow the fact that I heard him was calming.

ADDED; there were times that we both were carried on a flight of fantasy...wasn't all bad. Rather like being at a little girls tea party.

Thank you. Restating is easy to do. It's actually a common technique in sales. I can try that. But I also think she is so troubled by the whole thing that she will just continue to push it. Thanks again.

larryeny

star26 wrote:

If telling her the truth works, then by all means do it. The only reason it’s suggested to not tell the truth is because it often (not always) can cause the person with dementia to become argumentative or more agitated etc if they are really stuck in a delusion and don’t believe what you are saying. But your Mom has some awareness of her deficits and many people with dementia don’t. Sometimes when my Dad was sundowning and/or calmly confused I could say something like “You’re a little mixed up right now. I think you're sleepy.” and he’d respond with “Maybe you’re right” and let his concern go. Other times I knew better than to say anything like that because it would have inflamed the situation. Like your Mom, my Dad had some awareness that something wasn’t right in his head. 

Thank you for replying.

larryeny

Iris L. wrote:

Sometimes a PWD will remember her child but from a younger age.  She may not recognize the mature Larry.  

Iris

It changes from day to day and hour to hour. Other times I will ask her if she knows who I am and she will say "Of course I do, you're my son!" in a very loving and calm way.

larryeny

May flowers wrote:

star26, your post resonated with me. My FIL at one point knew something wasn’t quite right and we reason with him that he was tired or confused and he would agree. That was last year. Now, no matter what we say or how we redirect, he continues to insist he is right and we just have to drop it.

Fortunately, he is very swayed by food and if we hand him a cookie or bowl of popcorn, that ends the discussion right there, lol.

I’ve noticed that escalating  for him doesn’t result in outbursts or combativeness, but pouting. He will sit and glare at us or go to his room and not want to come out all day. I wonder if that is a precursor to violent outbursts or if this will be his way of coping with things that bother him.

Thanks for relating your experiences. I guess everyone is different. My Mom doesn't respond to her favorite foods like she used to - probably because she's depressed at knowing that something just isn't right. I hope that your FIL's reactions don't escalate.

 My Mom also doesn't yell - she tends to either cry or lean forward and put her head in her hands. The doctor has told me not to let her nap and not to let her go to sleep early. But frankly, when she gets like this, she gets exhausted pretty quickly and I think letting her go to sleep 30-60 minutes earlier might make sense (even though she'll wake up early or during the night and that will disrupt my sleep).

Good luck!

towhee

I think the only hard and fast rule is "do whatever works to bring comfort and calm". What you do varies by situation. I remember the first time my LO did not recognize me. It frightened her, frightened me, almost brought me to tears, even though I knew non-recognition was coming and had tried to prepare for it. 

From your moms' perspective she is at home, in her safe place, it is late, and there is a strange man there with her. She is unlikely to be comfortable with that. I think what you are doing is good in this case. I might simplify a little. Perhaps leave off the "remember I told you about sundowners" and say "you get really tired around this time of day and the doctor said when you get really tired your memory gets fuzzy. You'll be fine after a good nights sleep." Basically what you were doing already.

I'm going to pass along some things I have learned and things I have done in this situation in case you might find the information helpful.

Vision-what your mother sees when she looks at you might not match her mental vision of you. In her mind you might be 15, or 25, not the age you are now, and she gets confused. She could also not be seeing well later in the day. Also, changing your appearance in some way can confuse a PWD. So sometimes when my LO would say "Who are you, you are not (my name) I would say, I knew I got a drastic haircut, but I did not know it was that bad, or I look different with my new glasses don't I. It's me though, (my name), the one who always says or does (insert something from far back in the past, something that has often been repeated through the years). This does several things- It validates that there is a reason she does not recognize me, so she doesn't think she is "going crazy", it hopefully gives her a long term memory she associates with me, so she is more likely to believe me, and last, it lets her listen to my voice. Then you can distract with something that will hopefully occupy her mind for a while.

Voice- while your appearance changes through the years, your voice stays the same for a longer period of time, and is more likely to be recognized. There are times when a PWD will know who you are on a phone call, but not recognize you in person. Some people on the boards have had some success with the following technique if others fail-PWD refuses to accept that caregiver is who they say they are, Caregiver goes along with disbelief, says real caregiver is coming in now, leaves, changes appearance in some way, waits a few seconds, comes in door saying "Honey I'm home" or something to that effect. You can also try changing your loved ones physical location, to try to trigger a different train of thought.

In late stage my LO could introduce me to her nursing home companions by name and relationship when I first arrived, and a minute later ask me where "I" was. At that point I did not try to correct her, it brought more comfort and calm to just go with the flow. 

Wish you well-

larryeny

towhee wrote:

I think the only hard and fast rule is "do whatever works to bring comfort and calm". What you do varies by situation. I remember the first time my LO did not recognize me. It frightened her, frightened me, almost brought me to tears, even though I knew non-recognition was coming and had tried to prepare for it. 

From your moms' perspective she is at home, in her safe place, it is late, and there is a strange man there with her. She is unlikely to be comfortable with that. I think what you are doing is good in this case. I might simplify a little. Perhaps leave off the "remember I told you about sundowners" and say "you get really tired around this time of day and the doctor said when you get really tired your memory gets fuzzy. You'll be fine after a good nights sleep." Basically what you were doing already.

I'm going to pass along some things I have learned and things I have done in this situation in case you might find the information helpful.

Vision-what your mother sees when she looks at you might not match her mental vision of you. In her mind you might be 15, or 25, not the age you are now, and she gets confused. She could also not be seeing well later in the day. Also, changing your appearance in some way can confuse a PWD. So sometimes when my LO would say "Who are you, you are not (my name) I would say, I knew I got a drastic haircut, but I did not know it was that bad, or I look different with my new glasses don't I. It's me though, (my name), the one who always says or does (insert something from far back in the past, something that has often been repeated through the years). This does several things- It validates that there is a reason she does not recognize me, so she doesn't think she is "going crazy", it hopefully gives her a long term memory she associates with me, so she is more likely to believe me, and last, it lets her listen to my voice. Then you can distract with something that will hopefully occupy her mind for a while.

Voice- while your appearance changes through the years, your voice stays the same for a longer period of time, and is more likely to be recognized. There are times when a PWD will know who you are on a phone call, but not recognize you in person. Some people on the boards have had some success with the following technique if others fail-PWD refuses to accept that caregiver is who they say they are, Caregiver goes along with disbelief, says real caregiver is coming in now, leaves, changes appearance in some way, waits a few seconds, comes in door saying "Honey I'm home" or something to that effect. You can also try changing your loved ones physical location, to try to trigger a different train of thought.

In late stage my LO could introduce me to her nursing home companions by name and relationship when I first arrived, and a minute later ask me where "I" was. At that point I did not try to correct her, it brought more comfort and calm to just go with the flow. 

Wish you well-

Thank you. These are some really good suggestions. I can see where trying to have her connect with a long-term memory makes sense. Maybe even show her a picture of me from a few years back and try to reassure her that it's me. And I like the "finesse" that you made with your suggested change to what I've been telling her about sundowning. I will try describing it as fatigue - it's just that I think she relates to the word "sundowning". We shall see. Thanks again. Very helpful.

jfkoc

A memory...I would say "is just the snappies in  your brain being creative"

Arrowhead

DO WHATEVER WORKS. If telling the truth works, use it. If the truth doesn't work, find a lie that does. The most important thing is to keep the patient as calm and cooperative as possible.

John2.0.1

I'm facing a similar situation with my mom. It has gotten much worse in the last few months. She has Parkinson's related cognitive issues.

It started a few years ago with mild hallucinations. Cats and other animals. Children. At first she could mainly tell when she was hallucinating.

My dad died August 2019 and she needed to move to assisted living. Then March 2020 came the lock down. Terrible. The lock down is/was especially terrible for elderly in care facilities. She's in the memory unit now.

She's had more vivid hallucinations more recently and is starting to not know what's real and what's not. "A Truck smashed into the gazebo and destroyed it but they fixed it by next morning" I knew it wasn't true but I didn't confront her. Let it pass. Agree with her. "Oh that's amazingly fast work. They do good work around here."

But I visited her two days ago, I visit several times a week, and she asked me if I was worried about her. I didn't know why she'd ask so I said "Ah, no mom. I know you will call or staff will call if there is a problem".

 She was surprised and concerned that I had not been worried about her.

Then the full story was revealed. For the past two days she had been living in the delusion that she was not in her Assisted living/memory unit. She had believed that for the last two days she was on a cruise ship what had ship wrecked. Or rather, stuck in the mud. Some people evacuated but some people, including her, stayed on the ship. It wasn't sinking because it was just stuck in the mud. But electricity and telephone service was out and she was concerned I was worried about her. (She had forgotten that I had called her each day).

So what do I say? She was missing on a cruise ship and I wasn't worried? I think that my mom's greatest fear is that she will be forgotten. I don't want her to think she was forgotten. So I told her the truth. She was never on a cruise ship. She was upset and afraid that she had been living in a delusion. But she also knew that the reason that I wasn't worried was that there was nothing to worry about. I had not forgotten her.

The choice was confronting her delusion, make up some story to cover up the delusion that could come back to bite me, or having her think that I didn't care.

I think that I made the right choice. For now at least I remain her lifeline. I want her to know that she can always trust me because other than me and my wife, she doesn't really know that she can trust others.

But it was scary and a shock for me. Mom appears to be entering into a whole new level of delusion and I know that there's nothing I can do except to try to keep her feeling safe and not forgotten and loved.

larryeny

John2.0.1 wrote:

I'm facing a similar situation with my mom. It has gotten much worse in the last few months. She has Parkinson's related cognitive issues.

It started a few years ago with mild hallucinations. Cats and other animals. Children. At first she could mainly tell when she was hallucinating.

My dad died August 2019 and she needed to move to assisted living. Then March 2020 came the lock down. Terrible. The lock down is/was especially terrible for elderly in care facilities. She's in the memory unit now.

She's had more vivid hallucinations more recently and is starting to not know what's real and what's not. "A Truck smashed into the gazebo and destroyed it but they fixed it by next morning" I knew it wasn't true but I didn't confront her. Let it pass. Agree with her. "Oh that's amazingly fast work. They do good work around here."

But I visited her two days ago, I visit several times a week, and she asked me if I was worried about her. I didn't know why she'd ask so I said "Ah, no mom. I know you will call or staff will call if there is a problem".

 She was surprised and concerned that I had not been worried about her.

Then the full story was revealed. For the past two days she had been living in the delusion that she was not in her Assisted living/memory unit. She had believed that for the last two days she was on a cruise ship what had ship wrecked. Or rather, stuck in the mud. Some people evacuated but some people, including her, stayed on the ship. It wasn't sinking because it was just stuck in the mud. But electricity and telephone service was out and she was concerned I was worried about her. (She had forgotten that I had called her each day).

So what do I say? She was missing on a cruise ship and I wasn't worried? I think that my mom's greatest fear is that she will be forgotten. I don't want her to think she was forgotten. So I told her the truth. She was never on a cruise ship. She was upset and afraid that she had been living in a delusion. But she also knew that the reason that I wasn't worried was that there was nothing to worry about. I had not forgotten her.

The choice was confronting her delusion, make up some story to cover up the delusion that could come back to bite me, or having her think that I didn't care.

I think that I made the right choice. For now at least I remain her lifeline. I want her to know that she can always trust me because other than me and my wife, she doesn't really know that she can trust others.

But it was scary and a shock for me. Mom appears to be entering into a whole new level of delusion and I know that there's nothing I can do except to try to keep her feeling safe and not forgotten and loved.

I guess it's a matter of how you finesse it. I think clearly she wants to know that you care about her and in her mind if you worry about her you care. So why not just tell her something like "Of course I worry about you ... all the time ... you are my Mom and I am your loving son!" and add "Of course, you are getting really good care here ... the people here are being paid to take good care of you and I know it's a really good facility". Or something like that?

John2.0.1

Ya probably you're right. In any case I visited today and she was back to believing that she had been on that cruise ship stuck in the mud. Whatever I told her the other day didn't stick. She seems to think she's still on the ship sorta/kinda.

Also her memory unit is shaped in a rectangle in in the center of the rectangle there is a nice large open patio. She was telling me that last night a train (like Amtrak) crashed inside the patio and destroyed everything but the repaired it all (and got the locomotive that would never even fit inside the patio) removed and all cleaned up just the way it was.  I let it all slide...

larryeny

John2.0.1 wrote:

Ya probably you're right. In any case I visited today and she was back to believing that she had been on that cruise ship stuck in the mud. Whatever I told her the other day didn't stick. She seems to think she's still on the ship sorta/kinda.

Also her memory unit is shaped in a rectangle in in the center of the rectangle there is a nice large open patio. She was telling me that last night a train (like Amtrak) crashed inside the patio and destroyed everything but the repaired it all (and got the locomotive that would never even fit inside the patio) removed and all cleaned up just the way it was.  I let it all slide...

My Mom has been sitting in the LR asking "When do we get off the train?" or "When do we get on the plane?". I think these are probably typical. I have a tendency of correcting her, but I am going to make an effort to just let it go when I think it's appropriate. I find it very hard to just lie or play along - I was never good at improvising. These are very upsetting. A few short months ago, I never would have heard any of this from her. I wish you well.

Iris L.

John, did your mom see news about the ship that got stuck in the Suez Canal?  I think PWDs do better without access to the news and other disturbing images.  Delusions and confabulations won't be eliminated but they will probably be reduced, or at least not so traumatic.  I have problems myself with images.  I almost never watch the news.

Iris L.