recognition lost and found

ninalu

Hi everyone,

My mom is late stage Alzheimer's and I'm her only daughter. We have a good relationship and she has, for the majority of her journey (started in 2012, dx'ed in 2014) felt safe with me and as though I am "her person."

Up until recently (last ~2 months) she has quite consistently understood who I am. Even when she doesn't recognize me visually, which would happen sometimes, she has known my voice or my demeanor and no doubt through the special recognition that a mother has with a child, or a child with a parent -- not necessarily sight, sound, or touch but all of them plus some. 

Recently during our extended visits, I see her looking at me, studying my face and looking puzzled and a bit upset, displeased. She asks if I'm her sister, and I say, "it's Ninalu, your daughter." And sometimes she says that I'm not Ninalu, and sometimes she shakes her head and mutters something I can't hear, or looks pained, confused, irritated, fed up. After some time passes... a minute or several... she'll look at me with relief and joy and say, "you're my daughter, Ninalu!" Her entire expression changes from withdrawn, confused to delighted, warm, relieved. She holds my hand with both of hers, and leans in to bump foreheads (a thing we do) and be close, connected. 

My question for you all is -- how has this gone for you, this journey of being recognized or not recognized, bouncing back and forth between the two? Any words of counsel for me? I feel as though we may get to the stage where I should answer yes to her question if I am her sister. Or perhaps just introduce myself as a friend instead of her daughter. Any advice on what is right? It's hard to stay with her while she seems to be searching for who I am, but it's also hard to leave her just then because she seems to need the time to search. 

I'm not sure what to do, and thought I'd ask for some help on this. Thank you /|\

Phoenix1966

For me, my grandmother would think I was her physical therapist(we did look similar, with long, dark hair), her only daughter(who could be in the room at the same time) or I was a short, bald, old man. I just rolled with it, but if I needed her to recognize me, I usually had some luck by excusing myself, leaving the room for a few moments and then re-entering. 

May flowers

My FIL often thinks of DH as a small child by name so the adult version is confusing to him. Other times he recognizes him as an adult. Sometimes he thinks my husband is his dad. Maybe your mom is thinking of you as you were as a child. 

We bounce back and forth a lot. It has to be so confusing to them. I am not sure who I am to him - he has called me by everything but my name. I just answer to whatever.  Anyway, we don’t try and correct him, we just go with the flow and distract with a snack or change the subject, especially if he seems upset.

Arrowhead

 My wife usually recognizes that she knows someone, but can’t explain who they are. 

The best way to keep your mother less confused and less likely to get upset, is to go with the flow. Be whoever she thinks you are at the moment. Live in her world as much as you can. That’s a lesson I had a hard time learning and until I did, I caused more problems than I solved.

ninalu

Thank you Phoenix, May flowers, and Arrowhead for the helpful reminders of how to be with my mom in a way that helps avoid her struggle and upset. 

Perhaps the way I can handle it is to let her bring up my identity if she wants to. I can be with her without raising it, and this will likely ease her stress in the situation. 

Mom's other caregivers are always quite explicit about who I am when they see us together; e.g. "Mom, Your DAUGHTER is here! Isn't it wonderful to have your DAUGHTER with you? You two look so much alike!" It's been hard to avoid the subject when I visit because so many other people bring it up when they see us together. But we can see how it goes and I can ask them to stop if it seems to continually agitate her. 

Again, I don't think they do it to cause more problems, but rather because when she believes her daughter is with her, she feels comforted, happy, reassured. We're lucky that this has been such a source of comfort and companionship for so many years. If we're finally losing this easy connection, it will certainly be hard for her and minimizing her loss and discomfort is the right thing to do.  

Thanks for helping us through it!

harshedbuzz

ninalu-

The prompting by others "It's your daughter Ninalu to see you" is a standard dementia care strategy for PWD who might need scaffolding to make order of the relationship. Sometimes it is suggested the close family "introduce" themselves to their LO as they enter the room "your husband is back". So long as it isn't upsetting to the PWD, it's a good tactic.

It seems like when this kind of relationship is lost, it's a bit like a light flickering out for a period of time. I think this is because as memory is lost it is LIFO which means sometimes the PWD is expecting a younger version of their LOs. My one aunt with dementia often mistook me for my mom; we do look a lot alike. My dad sometimes fussed at me because I wasn't home watching my son; DS was in his mid-20's but in dad's mind he was about 7. I was kind of surprised he recalled my son as he referred to my husband of 30+ years as "that guy Harshed is shacking up with". 

My friend's mom eventually became confused around her only child. My friend was devoted to her mom's care-- to the point she and her husband maintained a long distance marriage for several years because mom couldn't handle the altitude in CO where he was based for a time. The only solace was that mom would sundown and say "I need to get home to Debbie. She'll be worried about me and I don't want her to worry. Debbie is a very good daughter. She's a lot like you."

HB

ninalu

HB,

Thank you. What you describe seems to be exactly what's happening with us. Mom talks to me about me. Sometimes it's calm. Sometimes she seems to miss her daughter and long for a visit, or wonder why she's been left alone. It's quite tempting at these times to want to let her know that I'm with her; that she's not alone. 

We're losing those bridges to connection via language or recognition. I'll do my best to be a calm and loving companion at all times, even when she tells me how she misses me.