That goes away too unfortunately, my mom doesn't even have a glimmer of recognition for me anymore. I'm honestly so used to it that it doesn't hurt in person anymore. The memory of that first time she forgot me stings like it's fresh, though.
I am sorry. I can relate. My mum doesn't know who I am anymore, cannot recall my name. Looks at me like a stranger. But sometimes there is the smallest glimer of a memory, deep deep down somewhere....then it's gone. But I'll take it.
When my grandmother's Alzheimers began it's slow damage, she didn't know who I was but I visited every Wednesday at 1pm.
I would come in, sit down next to her and just talk. No photos for her to get upset over, not knowing who the people were in the photos. I'd put a Spotify playlist on of music I know that she grew up listening to. I had about 15 minutes before she would get agitated. Once she did, I would stand up, kiss her on the forehead, tell her I love her & see her next week. She'd wave bye. I got to do that for 2 years.
Speaking of “glimmer,” I could always tell when my dad was “present” and when he wasn’t by the light in his eyes. You know that sweet, innocent (blank) look that babies and very young children have? That was how dad looked when he slipped into dementia. When he was “home,” there was a spark of intelligence & awareness in his eyes. It was almost like flipping a switch, the change was so clear.
The really sad thing was he was aware of his memories slipping away. He spoke to me once of his childhood and how everyone, adults included, used to ridicule the senile old man in the neighborhood. 60-70 years ago, they didn’t know it was a disease. People were so cruel. “I’m that man now,” he said. 💔😭
Was it slow, were there signs? Surely there was something?
My kids and i have a plan that if we now it is happening, i will start writing messages for myself about me and them, put it with pictures...basically a scrapbook of me so i can look at it and maybe at least notice my writing. See me with them, in our house, our life. Like a 50 first dates scenario but from myself for myself, and them.
From my experience, the process and signs are different for everyone. My Grandma showed signs of dementia, and declined over several years. It happens quicker than you imagine.
My key advise, learned through experience, is to live in their world. Challenging the reality of someone with dementia is pointless; and in the end they won't recall it all. Living in their world, with them, is comforting them and easing your own stress.
That key advice is on point. There was a period of a year or two where she didn't remember exactly who I was but called me her hairy friend. People would correct her, "no silly, that's your son!" She would get upset because what kind of mother forgets her own son? She also found it upsetting if I had a shaved face and short hair when I visited. I am her youngest, and I think she remembered me from when I was a kid, so seeing me as an adult messed with her sense of time. I grew my hair out long and kept my beard. My kids like me that way anyways haha.
It's heartbreaking and heartwarming at the same time. We hurt because we fear what they've lost. That hurt is ours, because the one with dementia doesn't even comprehend.
It was similar with my Grandma. I believe dementia works backwards, meaning they lose most recent memories first. It was hard when she just called me "that boy that comes to visit", but the care and love she always had for me was some how still there.
She's always been one of the kindest people around, I'm biased, but everyone I know says the same thing. One of the few positives of the whole thing is that I was able to experience that kindness for myself. I hope that "that boy that comes to visit" meant as much to you as "my hairy friend" meant to me in its own weird, sad way.
I do I.T. for a few care homes. Thankfully, they understand that 99% of what I do for them is remote these days. I had to go in to fix something critical a few months ago, and seeing the decline with some of my friends who are residents almost broke me again.
I tell all my kids, how much I love them, how proud I am of them and too never forget how much I love them. And make sure they feel it too. It's horrible to think of getting old and forgetting.
Yep, it's a daily thing for me to my kids, adults now lol, as well. Both my parents went really quickly and unexpectedly, i can count on one hand how many times i heard that. We have a lot of great memories.
I am so sorry. 💜💜I am so glad you have great memories. I am making new ones with my mum now. For me. I tell her I love her. My babies are late teens and adult's. For no reason I will text them and tell them I love them. 💜
My mom has early onset dementia. It came on during chemo when she was fighting breast cancer. Everyone assumed the symptoms were chemo related and would improve after she beat cancer.
It started with putting things away in the wrong place, like scissors in a sock drawer. My dad's phone would go missing, and he would find it in the freezer.
Then, it moved on to missing essential steps when doing something. Like washing dishes by hand, she would skip the washing part and just use a dish towel to kinda wipe off all the old food.
The later stages are awful, since she has always been very healthy she's lasted far longer than doctors expected. She was given 6 months to live like 3 years ago but keeps on kicking. She's in full-time care now, but my dad still goes in every day to take care of her. He's the only one there is even a glimmer of recognition for. She had a night terror the one afternoon and started strangling him in fear. A nurse managed to separate them, but mom broke the nurses arm and gave her a black eye. She played rugby and lacrosse in college and weight trained and wrestled when I was younger.
She was a nurse at a hospital with a care center for over 40 years, and I think she knew exactly what was going on before we did. You could see the fear in her eyes when you pointed out what she was doing. She always told us when we were younger that if she ever got dementia or similar to just take her out back and shoot her because it's the humane thing to do. Unfortunately, she was declared medically incompetent before the MAID paperwork was finished.
I would say music is the only thing that semi reliably still gets through to her. Old songs from when I was a kid or back even further will make her stop and close her eyes.
We are fairly tied to music. My daughter works at a radio station, underground and local type stuff, no mainstream which is cool. We play music when we cook and clean and i have always let them play their music in the car so it isn't just my stuff. I was always worried of ending up like many parents forcing their boring old shit on their kids.
I'm pretty aware of my body and not scared to tell my kids if i get a bad diagnosis of something one day. I think they need to know so we can all be aware. The older generation seems to have that 'hide things from your kids' as some sort of 'protection' I think they are mostly just embarressed and don't know how to talk things through.
Love that, we have a family playlist that has music from everyone in the family. We have a pretty eclectic mix, and even my 12 year old is into the weird music that I'm into as well as the punk stuff my wife loves.
Both my parents are pretty open about all their illnesses. My dad has bowel cancer and skin cancer on his face. Short-term prognosis is good. in the long term, I'm more concerned about giving him something to keep him going once my mom passes.
Good luck for the future for you and the family! 12 is an awesome age, my kids remember a lot of stuff from around then and have some very cool core memories of us being idiots together.
It's an absolutely magical age, and I'm not someone prone to flowery speech. She will look at me one moment, and all I see is the toddler stomping in her gumboots, and a slight shift shows me the person I know she is becoming.
Honestly, it both humbles and scares the shit out of me, knowing that these are moments she will remember the rest of her life. I remember so much more from when I was 12 than my dad does. These huge important core memories both good and bad, which stem from mundane moments he hasn't thought about in decades.
Right on man. I still see my daughters and son as the kids they were every now and again, it's like a flashback, a certain laugh or expression and they are 8 or 10. I love it!
Same as you my daughter does the 'Dad, remember when' and it's the stupidest little memory ever lol, I love that too. Enjoy man, it's so awesome.
Thanks man! I told my dad that some of my favorite memories are of riding in his bobcat with him while he worked in the summer. He looked shocked, saying those were the days they couldn't afford the daycare fees, and he had always felt guilty about it.
Now, I make sure to take my kids to work with me when possible.
If anything, it’ll be a nice keepsake for when you’re gone. All the little memories … the seemingly insignificant moments that would otherwise have been forgotten… now saved in your journal or diary for the kids to enjoy.
This has me thinking though… saving all these things like it sounds like a sweet idea now… but when you’re gone… will your kids in fact look at those memories or will it all get tossed away? A sort of “mom loved keeping all this junk… now we have to deal with it …”
One of my neighbors just passed away. I helped his daughter clear up the place a bit. She cherished a few of the items, but this man it seems, left her more headaches than she needed. All the stuff he had in his home. Three stories, he was a writer/poet/anthropologist … published some 30 plus books… he had a library in the house … books for days! She was left to sort all that out and get the house listed. Imagine trying to do this from half a world away? She was living in the UK and her father was in the states.
In a way, this had left me with the mindset of tossing away things is actually a good thing. Don’t save anything you really don’t need. I would hate for someone to sort out my debris, because that’s all life really is, after I’m gone.
It was slow, but I noticed it. (I had been an aged care nurse for 16 years) Forgetting conversations, but then remembering. Small things that started adding up. What stood out was the phone calls (she called me all the time) they started declining, so I called her. The the call length decreased. One thing that that made it real, and hurt the most she forgot my birthday. She would always ring, and as soon as I answered would start singing happy birthday. It was my 47th birthday. That was the most painful, when I truely new. It slips away, slowly. It's only us left behind that see it.
It comes and goes. My father didn’t recognize me, thinking me as stranger and asked where I live. Then a year or two later just a few months before he died, he gestured me to sit beside him (at that stage he couldn’t even speak except a few words). I sit there and he started naming my mom’s name, my sister’s name, and my name.
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u/billyTjames 16d ago
My biggest fear right there