In your personal opinion, how would you describe the complexity of dementia to others who aren’t familiar with it?
We can look up the medical explanation of dementia but no one knows exactly what it is truly like unless they have first hand experience of caring for a family member who has been diagnosed with dementia.
Sometimes, we don’t recognize the symptoms of dementia when they first occur. I missed the early signs and felt that my mother was confused, forgetful due to normal aging or that she was simply being contrary. I had so much to learn!
I think it would help others to hear what all of you who experienced caring for a person with dementia.
I think so many of us are afraid of dementia (fear of the unknown) that we steer away from the possibility of a parent having dementia. I was grateful when people on this forum suggested that my mom’s behavior could be stemming from dementia because it opened up the door for me to consider that she was having symptoms of dementia.
My mom did develop dementia along with her Parkinson’s disease. Knowing what I was dealing with helped me to understand her behavior. I also learned how to communicate with her doctor better in order for her to receive the best care.
Some of us may have seen dementia with a grandparent and had a head start on the situation with their parents. I didn’t have this frame of reference in my family. Neither of my grandparents had dementia.
Please share your thoughts.
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That's about as simple as I can make stuff right now.
My mother started asking the same question about once an hour, then it became multiple times an hour.
That was probably the first red flag that we noticed, but to be honest, things started earlier but could be attributed to other things. She became less likely to want to socialize, but we attributed that to her deafness and her inability to make out faces due to macular degeneration.
If I go all the way back to the first symptom that was really "not Mom," it was that she lost her emotions. My mom was a crier when it came to movies, the swelling of the music during the final credits, or laughing until she cried. That all went away, along with her sense of humor. She would still ask me to play silly songs I'd previously played for her on my phone, but she didn't react the same way she did. It was as though she knew something was funny, but she couldn't laugh anymore. When my dad died holding her hand, she just sat there in silence. The old Mom would have been in tears for weeks.
Dementia isn't just "losing your memory." It's so much more -- it's losing yourself.
Todyay, in my retirement, I am my older sister's caregiver. None of my previous experience and knowledge helps me much. Some days she's obviously confused, forgetful, confabulating her head off, and the the next she can seem normal to the extreme - sometimes many days in a row. I begin to suspect she is faking the whole damn thing, but then she will say or do something that proves that theory wrong.
This inconsistency in her behavior and abilities is the most difficult for me. I should be grateful (and I am, eventually) for her good days...but always feel like a fool initially. It is hard to stay grounded in the middle if another person's chaos. The only thing I can imagine being worse than being me (the caregiver of someone with dementia), is being my poor, lovely sister with the broken brain.
The crazy arguing. We’d go round and round and Mom would be irrational. There was NO convincing her.
I thought that *I* must be the crazy one.
Thank God for this site, and for all of you.
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I have mentioned this before but..I have read that someone with dementia might be able to hide or cover up signs and symptoms for sometimes 10 years before others notice and it becomes difficult if not impossible to hide symptoms any longer.
I have sort of described it like one of those pictures that people did a few years ago. You look at the picture from a distance and it is just a picture but if you look up close it is comprised of many individual images. Sort of like a puzzle. You take an image by itself and it is just that but put it all together and you see the whole picture. All the little things that seemed odd, quirky, a bit off, a missed appointment, getting lost, a missed word. Individually it means nothing but put them all together and you begin to wonder.
The important thing is to advocate for testing. Do not let a doctor ignore or brush off concerns. You know this person better than the doctor that may see him or her 1 or 2 times a year.
This is how I'd describe most dementia cases I've been around.
Sometimes there are a few who just regress back into being toddlers having a good day. They have to be supervised 24 hours a day but they aren't miserable and they just get on with their days.
This is how I'd describe dementia.
And everyday someone messes up the progress you made on the puzzle and changed up some of the pieces on you and you have to start over again .
The only thing that is the same everyday is some of the phrases that are repeated over and over .