If your LO doesn't know who you are

Ed1937

This video might help. When someone with dementia forgets who you are 

Crushed

I'm sorry  I thought the video  was mental pablum for distressed caretakers.  I went through the excruciating experience of my wife forgetting me Step by step by step.  I recall the first time she stared at me without any recognition.  She no longer responded to any of the signals or tools I used to maintain a connection  By Christmas of 2018 she had no idea who I was in any way shape or form.  She no longer had intelligible speech of  any kind.  She could respond to simple one word commands.  She has continued to deteriorate.  she no longer responds to words of any kind.  To suggest she has a functioning cognitive brain is just painful and insulting.

LadyTexan

Thank you for sharing the video Ed. The information in the video is consistent with something I had heard from another highly regarded dementia care specialist. I appreciate the reminder.

My DH is probably mid-stage 6. My DH has a functioning brain, however, his cognitive skills are significantly impaired. His brain does not function like it used to. I frequently am not sure what is going on in his head. That is the mystery and the cruelty of this disease.

I am blessed that DH continues to recognize me. I recall a day DH had a very hard time stating my correct name. That shook me up on the inside and paused my heart. 

Ed1937

Crushed wrote:

I'm sorry  I thought the video  was mental pablum for distressed caretakers.  

I never said it would help everyone. That's why I put "might" in bold letters. But I do think there are others who might find a little comfort in the video. It's simply an alternative way of looking at things.

June45

Thanks Ed...I always appreciate your sharing videos, etc. that you come across!!  We are headed that way. My husband knows I am his wife but like LT, he has on occasion had a hard time remembering my name.  The other day I was "Lily".

abc123

Ed, as always, thank you for sharing good info with us! You are greatly appreciated.

Crushed

Ed1937 wrote:

Crushed wrote:

I'm sorry  I thought the video  was mental pablum for distressed caretakers.  

I never said it would help everyone. That's why I put "might" in bold letters. But I do think there are others who might find a little comfort in the video. It's simply an alternative way of looking at things.

There is nothing in the video that says its for early stages etc Its simply straight denial

 There is no text, no references, no professional support statement etc

her is what the Alz org website says  

 https://www.alz.org/help-support/caregiving/stages-behaviors/memory-loss-confusion 
 In the later stages, memory loss becomes far more severe. A person may not recognize family members, may forget relationships, call family members by other names, or become confused about the location of home or the passage of time. He or she may forget the purpose of common items, such as a pen or a fork. These changes are some of the most painful for caregivers and families.

Such types of behavior is sometimes incorrectly referred to as "senility" or "senile dementia," which reflects the formerly widespread but incorrect belief that serious mental decline is a normal part of aging.

Learn more: Stages of Alzheimer's, Age-related Memory Loss vs. Alzheimer's, Dealing with Memory Changes 

Causes

The main underlying cause of memory loss and confusion is the progressive damage to brain cells caused by Alzheimer's disease. 

jfkoc

Thanks Ed.....I am certain it will be helpful to some who are caring for a person with dementia. I thought the written verbal clues were worth trying and appreciated that they were not challenging.

aod326

My experience was a little different. Starting 18 months or so ago DH went through periods of thinking I was someone else, but in some ways it was cute because a few times he told me how amazing A (me) is! One time that made me chuckle was when I asked him if the person who had been here looked like me.  He said "Yes, only heavier." I had put on a lot of weight in the previous few months, so he was quite correct! By September last year he didn't show any signs of recognition. But when I brought him home from MC in January, there were many times when it was clear how he felt about me, even if he didn't know I was his wife.

CStrope

Ed I think it's wonderful that you posted and offered this up for people to see and take from it what each individual wants to take from it.  We all need a variety of options when it comes to dealing with our LO.  Supporting and helping each other is what these message boards are for.  None of us are having a picnic in the park, and we all have our own chapters in this big book of Alzheimer's.  Understanding and respecting that each of us has a different story is what helps us all SUPPORT each other.

feudman

The scenario Dr. Edmonds describes in this video is one possible scenario. It was outlined in Jolene Bracken's "Creating Moments of Joy..." & other books. Many experts would disagree that this is ALWAYS the case, particularly in the late stages of AD, where actual memory loss is a defining symptom. And many of you have described your LO confusing you with someone else. Or they recognize you, but as a "new" person, perhaps a paid caregiver. In other types of dementia, there may be other reasons for not recognizing LO's.*

Now, if what Dr. Edmonds describes IS what's happening, consider this: she  states: "Your loved one may be remembering you at a younger age, perhaps as you appeared 10, 20, or 30 years ago." Yes, it helps to know in what period their "wayback machine" has taken them...maybe you can try to fix your hair or dress the way you did then. BUT...what if the "Wayback" landed them further back, as in college years, high school, or grade school (as is often the case)...did you exist then? If not, like it or not, you have to be a "new person."

Every case is unique, and we all must find our own way to deal with it. But I dont see any reason for anyone to expound on how awful it is when your LO no longer recognizes you as their spouse (or child). Personally, I was formerly in the camp that thought this would be the worst imaginable milestone, and afterwards, I'd find placement or not visit as often. But what I learned is that even if I'm not who I was before, whoever I am now,  I can still be the person who brings some joy into their day, and make them feel safe, secure, and loved. Sure I miss what we had before, but I've found comfort in that role. I love her now as much as ever, and making her smile makes my day.

Yes, this can be a VERY hard adjustment; from spouse to caregiver/companion, but it can help A LOT. You will still be making happy memories with your beloved.

* A "disassociation" scenario is outlined in the book "What if it's not AD" (ed. by G&L Radin). Similar to "face blindness," it's when the "memory file" of each person can't be accessed by their face or image. So in effect, the memory is still there but "misfiled." This type is most common in FTD, where memory loss is minimal until late stage.

Ed1937

Thanks for the feedback. If just one person can get a little comfort from it, it was worth the time to start the thread. My wife knows who I am. But every day she wants me to take her to her grandparent's house (gone since the 1970s). So if she gets to the point where she doesn't know who I am, I hope I can remember this video. We all know they return to earlier times in their lives, so if I can keep that in my mind, maybe the sky won't be falling, as least not as hard as it would be otherwise.

Jeff86

I thought the distinction that was made between remembering and recognizing was interesting.  That seems potentially meaningful for caregivers whose LOs seem to understand or accept some role of significance for the caregiver but not necessarily marital status or name.  

I’d also agree that in more advanced/later stages that distinction may disappear entirely, when there may be neither remembrance nor recognition.  

amicrazytoo

Thank you Ed. I watched the video and it opened my eyes to why my DH does not think I am his wife. If only I could look the same as I did so many years ago.... Aging does take a toll.