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Not Sure How To Cope Or What To Say

Daisie
Daisie Member Posts: 84
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Hi everyone! I'm looking for some advice from the collective brain out there.

My mom's dementia had been fairly slow to progress over the last several years….until she turned 90 a few weeks ago! For some reason, it seems like it triggered something, though I'm sure it's just a coincidence.

She's suddenly having moments when she calls me her "adopted" daughter (I'm biological, and she's always been around and vice versa) or doesn't think I'm her daughter at all. She wants proof, so we'll go through the photo album, and I'll pull out my birth and baptismal certificates to show her. However, it's in vain because since neither has my photo, she won't believe me. And when I show her pictures of me, she says I look nothing like the person in the photos (of course, because those pictures are from when I was a LOT younger).

I'm trying not to be so reactive and consider what's going on, including the fact that she's missing a huge chunk of her memory that coincides with my childhood. I'm 50. Memories from the 1930s-1960s are there for her, but they're spotty going forward. It makes sense that she doesn't remember why or how I'm here. Of course, when she's balancing multiple thoughts or is stressed, it's worse. I try to let the moment pass.

Any words of wisdom on how to respond to her that's still respectful but so I don't spin my wheels and get so upset? Any tricks you've used to cope with what's going on? Each time it's like a sucker punch to the gut, and I'm trying to get past that as I have with other things that have happened. However, this is harder!

Cheers!

Comments

  • M1
    M1 Member Posts: 6,788
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    It is quite hard when someone you love forgets your entire past. I have learned not to be reactive to it, and don't even pull out pictures, etc. much any more because they don't register and she doesn't recognize me in pictures that we do have. It's like you're someone new they are meeting for the first time—although on some level, some familiarity is likely to remain. My partner of 30 years told me this week that she was surprised how much she loved me, given that we had just met—and she hoped that was okay with me. I just told her it was fine and yes, I loved her too. She doesn't remember how we met, or anything of our 30 years together. She's known my kids (previous marriage) since they were 2 and 4, but doesn't remember them now or recognize their pictures. If it comes up that I have kids, she says she wishes I had told her sooner. She asks where I live nearly every time I see her, which is 3-4 times a week.

    I think you are on the right track just to let it pass and not react. I would try to avoid cycles of "proof"—say you'll bring it next time. But you will still grieve in it private, and here.

  • Daisie
    Daisie Member Posts: 84
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    "My partner of 30 years told me this week that she was surprised how much she loved me, given that we had just met—and she hoped that was okay with me. I just told her it was fine and yes, I loved her too. " Yes! That resonates! It's true when they say they'll often remember how they feel, and she knows she loves me, and I love her, and I guess that's what's important! We all just want someone to love and to love us! Thank you for your insight!

  • Emily 123
    Emily 123 Member Posts: 782
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    Hi,

    It might not hurt to have her checked for a UTI, since this seems abrupt.

  • MarieES
    MarieES Member Posts: 10
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    edited May 2

    I am going through the same things with my mom. She turned 96 last week. I moved in with her 10 years ago to our family home to help her when her symptoms started. We have owned this house since 1955, but mom doesn't think it's her house. She asks to go home to her house over there. She thinks she has little kids and her mom is still alive. I was given advice to check out Teepa Snow on YouTube and it has helped a lot!! I've watched about a dozen or more of her videos and she explains how dementia affects our loved ones. She explains that parts of their brain are dying and that affects how they think, see, act, etc. One suggestion that helped me was when they say they want to go home, they really mean home to their life when they were in their 20's or so. They see everyone around them as being in the same year she is stuck in. That's why they think they have babies or that their mom is alive. Instead of telling my mom This is her house or Your kids are all grown, I now tell her This is my house and you are staying with me while dad remodels or paints your house. I also tell her her kids are spending the night at Grandma's, at her sister's house or dad is with them. She's much more accepting with these answers. If she's less frustrated, so am I. I recommend you check out Teepa Snow. It has been a blessing to understand what my mom wants, so I can make her happier. I'll keep her home as long as I can help her. God bless you for caring for your mom and may you get the answers to help you know what needs done. ❤️

  • Daisie
    Daisie Member Posts: 84
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    Thank you so much for the advice and referral. I will definitely check her out! I'm also currently reading a book called "Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief," and it's giving me great insight, too! It's stressful, but I know in the long-run I'll be thankful I read it!

  • Motochris
    Motochris Member Posts: 4
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    My mother was recently diagnosed with Alz. Tuesday we were having a discussion about her first TV and how great it was. Then she asked me if I had color TV when I was growing up. I thought it was a strange question, as she bought me my TV when I was a kid. I wasn't sure if she was just forgetting or if it was something different. I answered the question and we move on. A question or two later she asks "Were you born here?" and I realize she doesn't know who I am. Man..it was a bit of a shocker at the moment. I think I kind of froze..not knowing what the right thing to say is. The old "don't wake a sleepwalker" kind of thing…what do I do/say here? I told her where I was born and she kind of started remembering..telling me how glad she was that the people that had me, gave me away (I was adopted). Maybe 5 minutes later, she said "I was talking crazy wasn't I? I forgot you were my son." I just said that it's OK and moved on with our conversation.

    I'm still not sure how I will deal with it moving forward… hopefully I will pick up more info here.

  • CaliforniaGirl-1
    CaliforniaGirl-1 Member Posts: 128
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    It is a very sad thing that happens. My LO is extremely elderly and she has no idea of her age. She doesn't recognize herself in photos or FaceTime. When I show old photos she recognizes some people but in more recent photos or slightly older will always think photos of my daughter are me and photos of me are her.

    Right now, she seems to know who I am and that she has a children. She asks about my brother. But she doesn't remember much at all about our lives. She talks all the time to everyone at MC, about her daughter and how much she loves her. But on one occasion quite a while ago said, " I know that you are not my daughter but I like to pretend you are." I am steeling myself for when she stops recognizing me because I don't look like my 25 year old self.

    I think she has mentally landed decades ago, when we were younger and her parents were still alive and at this point I just go with it. Sometimes I will tell her about the family and that everyone loves her. It will devastate me when it really happens but I know it has nothing to do with how much she loves me.

    When she says something like, Its been a while since she has seen her mother or her sister, I just agree.

    At this point, I will settle for her feeling safe and not scared and if she knows she is loved I will be content.

  • Daisie
    Daisie Member Posts: 84
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    Yes, I'm trying to make sure my mom feels safe and is relatively content. I'm trying to place HER fear above mine when I start to stress! Thank you for your thoughtful comment!

  • Daisie
    Daisie Member Posts: 84
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    My mom did the same thing the other day when she wanted me to "prove" I was her daughter! Later in the day, she said, "I was talking crazy earlier, wasn't I?" I just said yes, and that I figured she was confused or wasn't feeling well, and she seemed to be content with that answer. I did notice it happened after she hadn't had much to eat that day, so I am wondering if that kind of triggers it at times.

  • psg712
    psg712 Member Posts: 384
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    Last night I was sitting with my mom at dinner in her MC. Another resident at the table started talking to me. Mom interrupted and tried to introduce me to the other resident. Totally shocked me, because she's not initiated conversation for a while. She said, "This is my ... you are ... tell her who you are!" The last time she tried this, she told someone that I am HER mother. Not sure if she believes that, or if she just struggles to put the right words together.

    As long as she feels loved and important to me, she can call me anything she wants. The harder thing than the loss of my name is the loss of our history together. A few years back, when I was just coming to terms with the fact of her cognitive decline, I was playing tennis with my then 8 year old son. It was one of those moments when you look around and realize the beauty of the moment, and I thought, I want to remember this day forever. My next thought was, I wonder if my mom remembers anything we did together when I was eight. It was a punch in the gut. The losses of dementia are multilayered. But there are still some tender moments, and I appreciate those when I get them.

  • FiftyAndWantMyMom
    FiftyAndWantMyMom Member Posts: 3
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    Hello everyone,

    I moved back home to California from Missouri about a month ago to help my sister care for our mom. I haven't been here in 7 years. This is the hardest thing ever. My childhood was chaotic and traumatic with lots of neglect and disappearing parents. I did a lot of soul searching before I came home. I have decided that I would like to care for my mom the way I wished she had cared for me. It's working. The only thing is, is that she keeps getting worse every day. She fell a couple times a few months ago, had hip surgery, and the anesthesia really rocketed her forward in stages of dementia. Some days she wakes up with a smile and absolutely knows who I am, other days she wakes up with a wide eyed terrified look, saying she needs to get out of here, where is she and who the hell am I. Logically I understand that the pressure on her brain makes her forget who we are, as her daughter I die a little inside when she says, "what's your name?" I would like to connect with some people who don't look at me like I'm crazy when I vent and who don't ask me why we don't just put her in a facility so we don't HAVE to be put out. I don't feel that way. While it is hard every single minute of every day, I don't feel like I'm missing out on life. This IS life. While I feel like every situation is different, we have the time, Patience, and luxury of keeping my mom home. I really just hate watching my mom die slowly. It really eats at me that she's trapped in her own mind and it's just awful. A couple days ago she started leaning in her wheelchair, recliner, toilet. We can straighten her but she immediately leans again. She's also telling us (when she's verbal) that she talks to my grandmother (her mother) when she's asleep. My grandmother died several years ago. It really makes me nervous that she's talking to dead people, but I don't know what it means, if anything. Thanks for listening to my rant. I'm open to any help or just understanding.

  • Lynn24
    Lynn24 Member Posts: 82
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    Welcome to our caregiver community. This community has been very helpful for me these past few months, since I joined. It helps me feel less isolated and my hope is that it will prove the same for you.

    My mother has been living with us for almost two years, and her symptoms are very similar. Each day can be different as far as behavior, and it has been a very grueling process.

    Through out my process of therapy sessions, I have discovered that I am grieving the loss of my mother gradually, instead of all at once. I have found solace in learning this.

    My mother is in stage 6 of the disease.

  • mrsabaldwin
    mrsabaldwin Member Posts: 44
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    My mother does the leaning thing and has movement or fidgeting. Her doc put her on Seroquil for it. So far it is helping. While it can be a sign of a rare form of Huntingtons, for my mom it is a result of arterial fibro dysplasia, an old stroke, and a recent stroke. The best thing I did for mom was ask for a CT Scan and get a referral to a neurologist. So helpful and informative!

  • mrsabaldwin
    mrsabaldwin Member Posts: 44
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    These comments help me to know that I am not alone. Mom goes back and forth in time. And her delusions are off the charts! I have had to remove children from her chair and there was no one there. Yesterday she told my DH that I was setting her up on dates who were refusing to pay for dinner and activities so she was ducking out of the dates and leaving them with the bill. Those are just a few! She continually wants to go home. She told a specialist she has been seeing for years that she was just visiting from out of state. The list goes on. Thank you everyone for sharing. It really helps!

  • Smilescountry
    Smilescountry Member Posts: 109
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    Dad doesn’t remember many people, and he often gets me confused with Mom, but other times he knows me quite well. His hearing is perfect, and he seems to identify me more by the sound of my voice than by how I look. I will usually greet him by saying , “Hello!” Rather than “Dad.” I only call him “Dad” if he calls me by name. I focus on smiles and emotions more than anything, which helps. For me, the hardest thing is watching my Dad try to sing. He still loves it, but he mostly just mumbles, and that beautiful bass voice that he used to have is gone.

  • harshedbuzz
    harshedbuzz Member Posts: 4,479
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    Memory in dementia is lost in a LIFO manner. It has nothing to do with the importance of a relationship to the PWD.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more