It's honestly one of the worst things in the world to watch a parent go through an illness.
Something like Alzheimer's, where they lose their grip on reality, is especially taxing for the children of those parents to go through. The parents may not remember who the children are; they may not recognize those children. They may travel back in time in their minds to when they were young.
The changes that come with facing the disease are difficult in nature and sweeping in scope.
Here were some of those answers.
This is a good question. I care for my grandmother who has dementia and it's been 7 years. First thing I noticed was her becoming testy. She started to not be the sweet grandma anymore. She also started calling me a liar because she couldn't remember things. I was getting puzzled as to why she couldn't remember things.
Then it started to dawn on me. Got her diagnosed and started on medication.
Now, seven years later, she can't remember anything from a minute ago. Yet, she can tell you anything from 50 years ago like it just happened. Crazy how this disease works.
A Farm In My Mind
My great-grandmother died of Alzheimer's. It is truly a troubling ride. At first, it was short term memory, simple things. However, the biggest red flag was - get this - she would see chickens all over the place. She would try to chase these imaginary chickens around the living room, or would kick her feet as if to get them to f*ck off. She would also clean imaginary spider-webs.
I was once told that often Alzheimer's patients will relive old memories - my great-grandmother grew up in 1920's El Salvador - likely lived on a farm with chickens.
When Time Makes No Sense To You
We were visiting my great aunt. At this point she lived in her own house (no kids, never married). My mother comments that she liked a vase she had in her living room. My great aunt said "thanks, it was Mother's. I'll have to ask her where she got it."
This was about 2004-2005ish. Her mother had been dead since 1955. It wasn't long before it became more obvious.
Just as an aside, as a nurse who works with dementia patients, it breaks my heart when they ask me about their parents, as if they were still alive (or their deceased spouse for that matter).
I was away at school when Mama first, first started. but it was things like not obeying driving rules, not listening when we told her something, not following the plot of simple movies and... over reacting to them? like I was watching the old animated Cinderella movie, and she couldn't understand why the step mom was being so mean. or why the animals were talking. she also got super religious (she's always been, but it got intense for a year or so) and lost any sense of... tact? like trying to convert a widow to her religion at the memorial service. That happened. It was yikes.
it's been two years since the official diagnosis. She's... bad. She no longer understands concepts like time (1 am and 1 pm are the same to her, she can't differentiate between today/tomorrow) or safety or not waking people up constantly... she no longer recognizes anyone aside from her mother (gran is 93 and mentally fine), my father, me, and my brother. Doesn't know our cat. Doesn't know her brothers, doesn't know friends she'd been close to for 40+ years...
My life changed a lot. I have no energy because any time spent out of work is keeping an eye on her. she's like a toddler, she isn't capable of logic or understanding orders, much less following them... it's hell. i hate the person I am around her. I want to move away. My mother is dead, her body just hasn't realized it yet.
It Goes To The Shadows Quickly
Not my parents, but my grandma. She was 92 by the time dementia began to creep in, but it consumed her completely within 3 years.
First, it was little things -but very noticeable-, such as words. A few months later, it was people; she would confuse people from her past and the present. Then, she started hallucinating and making up stories about people that didn't exist doing things with her she couldn't have possibly done (like go to places that no longer existed in my hometown or visiting friends that were dead). Next, she completely forgot about my grandpa (who'd been dead for ten years at this point, and to whom she'd been married for over 50), and after that she also forgot about her firstborn son, who had died 8 years before.
A year after that, she no longer recognized any of our relatives, except for my father, who took care of her until her last moments. However, she never forgot about me. I was her first granddaughter and named after her mother (whom she'd also forgotten about), and my dad told me all the time that she would spend days without saying a word, then suddenly ask about me, or light up when he said my name.
It was very painful to watch her turn into a shadow of the amazing woman she'd always been.
I have become a caretaker for both my parents who have dementia of different types and levels. Dementia is actually a broad term, not a specific condition, unlike Alzheimer's. My mother forgets things all the time. The good news is she has adapted to me caring for her and recognizes that she forgets. She laughs about it. My Dad struggles a lot because he really wants to be self-sufficient and prove it, but keeps struggling. I have to let him do projects and take some responsibility for things because it keeps him going, even though often he makes more problems that way. He has a lot of trouble with words and frequently gets irritated with Mom and I when he can't communicate. He also has hearing problems.
I was angry about it for maybe a year. I kind of accepted the role, but I also resented it and kind of let people know that I wasn't living the life I wanted to live. (obviously I could walk away, but my parents have been very good and supportive to me most my life). Then I hit a point where I accepted it. I stopped pushing them to consider going into a home and figured this is just what I am doing right now. In some sense I feel pretty good that they are having a better quality of life than they could without me. Since I came to that realization I have mostly felt good and also done more things for myself.
There Is No Good Ending
My dad started getting lost driving to/from short errands he'd done hundreds of times. Then he'd start saying things that just seemed 'off'. Then he started forgetting to take his insulin, so his 'wife' would end up calling him an ambulance once a month or so.
None of us kids lived in the same town, so it took longer than it should have to get him help. By that time, he was trying to eat the wooden decorative fruit.
His 'wife' (together 20 years but never married) has it even worse, and they are both in care homes now. Sadly, they aren't married, and he's in one home that the state will cover, while she's in another one that's covered by her long term care insurance. Separating them nearly killed us.
My sister moved to his town to be closer to him. Some days he holds decent short conversations, but often gets confused and changes the subject to whatever is directly in his line of sight (water bottle, fork, whatever.) We had to sell everything he owned (house, motor home, etc.) to pay for his care, then once those funds ran out, the state took over. He doesn't know this, and plans to live in his motor home when he 'gets better.'
It Changes Your Personality
My father was vigorously anti-racist all his life. So when he started blurting our racist and anti-Semitic comments in his early 80's, I told him I was shocked and bawled him out.
"Why?" he said. "I didn't say anything."
I'd argue with him a bit but finally gave up when confronted with his irrational nonsense.
He died at the age of 84. One of the causes of death was Alzheimer's.
Why didn't I see it?
Gone Too Soon
My grandmother first kept forgetting the grandkids names, or simply called them by a different grandkids name. Usually my cousin since she helped raise him and "that ornery rascal was her favorite". Then she didn't realize where she was in the evening (sundowners). The day she passed she was so lucid and calm. She looked at my mother in her last moments and said "I know the last few months have been hard on you. I love you with everything I have and was." Her big blue eyes went wide one last time and she leaned forward and embraced my mother and died in her arms. It was one of the most beautiful moments I have ever experienced. Thank you for asking so I could remember her today.
Love Beyond Time
I didn't see my parents go through this. At least not yet. Hopefully that doesn't happen.
But I did see my grandma go through this. It was tough on the entire family, especially my grandpa. But he definitely taught me something about love in regards to this. They've both passed and I love them both immensely.
I am reluctant to even say this because it makes it more real, but... I do see some things that my dad does that reminds me of what my grandma went through. Once we learned that my Grandma had Alzheimer's and learned more about the symptoms, it made sense. There were things over a decade (or maybe more) that could have been signs.
For my dad, it's more memory things. And a little anger about things at times. I've talked to my sister about it (we're both in our 30s). At this point it's one of those things that it could just be aging, or it could be early signs. I think we are both overly sensitive because of my grandma. But that's not a bad thing.