Looking back, knowing what you know now about Dementia and your LO, if you could go back in time and eagle eye watch for the tiniest sign that cognitive function was beginning to decline, what incident or event would you pick up on as that tiniest sign?
For us, I think it would be her absolute inability to stop herself from bringing a painful subject (and her ridiculous opinions about it) into EVERY conversation. Not just some or most. Every conversation, no matter the topic. Despite being asked not to, despite it being demanded that she not, despite people getting to the point of refusing to speak to her at all because of it. Every conversation, without fail. That started probably 20 or so years ago.
I can think of some others as well, but this one is the most prominent.
My Aunt is sick with a virus and coughing so we couldn't discuss it.
This is something new, so I'm praying maybe it's just a u t i. As weird as that sounds.
The first sign that made my blood run cold was 8 years ago when she said she felt rats and squirrels inside her mattress and saw a cat in the house. She also heard Christmas music and told me to turn off the radio, which must be on the porch. It bothered me that her hallucinations made sense to her. I had a lot to learn about dementia.
She became increasingly afraid of intruders, saw people attacking family members in the driveway, and at one point she thought people were living in her attic. Paranoia exploded into delusions, of which she couldn't be convinced otherwise. She walked down the highway to escape killers.
It's been around ten years and she lives in memory care now because she gets confused and tries to walk away. But she still recognizes everyone, and performs her ADLs without assistance. Her caregivers say she's the most with-it person in memory care which breaks my heart. She remembers what she had for dinner last night and remembers conversations with caregivers. She constantly tells me how impaired the other residents are. They don't know who they are and can't feed themselves and a lot of them yell and fight and ask for their mothers. She is especially annoyed when they ask the same questions every day over and over.
My mom can give you her full biography, albeit there will be big delusional stories mixed in with the truth.
It was progressive, as we all know, but the element that made it impossible to deny was when she started putting her hearing aid batteries in her ear, rather than in the hearing aids.
Even though I had seen it all progress over years, and knew what was happening, other family members - with only occasional calls and visits rather than regular weekly visits and frequent calls - still could not see the signs until it became extreme.
At the point where I was taking her to the doctor to get hearing aid batteries taken out of her ear canal, shutting off the breaker to the stove, and disabling her car, I still had my sibling telling me nonsense like “Oh, she’s just bored and lonely.”
Yet, years earlier, my mother could not see the signs of dementia in my father. Spotting the signs seems to take regular contact, but not *constant* contact. She couldn’t see the signs in him because to her it was too gradual from her perspective. Others couldn’t see the signs in her because their contact was too limited and irregular to see the steady steps of decline.
So, it's been over five years since the diagnosis. He's gradually slipping away. Really hard to watch.
Mom's peripheral vision was gone...walking behind cars backing out of a supermarket parking lot. Making a bed with the sheets 1/2 way on the floor and couldn't fold a facecloth.
Mom had hearing aids and cataract surgery so I couldn't figure out what was wrong. Finally, I took the car keys off of her when she was driving down the street and reading the mileage at the same time. Her concentration and her driving too close to the driver in front.
Mom also had the tendency to not gage the distance from walking on a sidewalk and would almost go off the sidewalk walking with a shopping cart.
Spatial awareness was the first to go...
I said that I thought I was seeing it in my husband in the early 2000s. There were quick moments of confusion about time and place. The doctor said he was having Transient Eschemic Attacks (TIAs), so that's how the strange episodes were explained. In 2002, we gifted our daughter and her husband the lot next door to us, they built a house and moved in early spring 2003. In 2004, I found him staring out the window at their house and he said to me, "Why is there a house on our lot? Who put it there? Who lives there?" I'm not sure that was a TIA. By 2013 I was sure he had something psychological going on. He was diagnosed with dementia (frontotemporal and mild cognitive impairment) in 2017.
My oldest daughter said she now thinks she saw things in the late 1990s (there is too much history to go into right now). In her eyes, she believes her father (a pastor who had an affair that ended in 1995 but it wasn't revealed until 2017) was given over to a "seared conscience" or "reprobate mind" and that the things he started saying/doing/teaching back then could have been the beginnings of dementia.
My other daughter said she looks back and realizes that he was always a little bit "off" but just attributed it to his personality as it was his "normal" way of behaving. In public, he had to be the funny guy and the star of the show and everyone's best friend, but at home he was sharp, criticial, controlling, and nasty. She recalled me saying to him once, "Why don't you pretend we are your church people and treat us the same way you treat them?"
So, is it possible that my husband was showtiming even in the 90s, or do we just attribute it to personality? I guess that is a question we'll never know the answer to for certain.
I moved in with my folks to be their caregiver, so I was able to spend the last two years of my mom's life with her.
Last year, when I mentioned some concern about having early signs of dementia, a physical therapist told me that forgetting where you put the scissors is not a sign of dementia. If you forget what scissors are for then it is worth discussing with a doctor.
This has been a very helpful barometer. ❤️
She’d always been obsessed with ways she’d been wronged, so again, it was tough to determine a specific time.
Both hubby and I are not as quick on the draw when it comes to remembering names of people in the public eye. Usually the name will pop in our brain 5 minutes later or at midnight. No big deal, our brains are so full of information it takes longer to sort out.
Hubby has on occasion left the stove on, or forgot to close the freezer door. He's always been absent minded. One can follow his trail of open cabinets and left on lights. Heck, I've left on the stove myself back when I was in my 30's and 40's. We grew up back when stoves had a red light that would let us know the stove/burners were still on. Wish appliance companies would bring back that idea. Now if I looked at the stove and it said 425, that could be the time or the oven temp.
My folks developed dementia in their mid to late 90's. Mom's happened after a fall where she hit her head, she forgot how to walk along with other things. Dad's was probably just age related.
If I look back probably 10 or 15 years BEFORE his diagnosis I can pick out isolated instances that were "off".
I think the one thing that got me to set up an appointment for him for a memory screening was the fact that he made a wrong turn on a road. For a brief moment I thought, no big deal it had snowed and the landmarks were obscured so it was easy to miss. But it kept nagging at me and a week later I set up the appointment.
From that time until his death was about 12 years.
So looking back the decline was probably 20 years. He was 63 when he was diagnosed.
I have said that figuring it all out is like looking at one of those pictures that looks like a regular picture but then you get closer and closer and you realize it is made up of hundreds of other pictures. You put all the pieces together and then it might make sense.
the big question is...would getting a diagnosis any earlier have made a difference...my guess is not. Would I have been more prepared....I don't think so. BUT I would have done some things that we put off. Travel is the biggie. Maybe getting him to an attorney so that I could have had legal work done that would have made things easier for me later on. (But I know he would have not agreed to that!)
2000 - The absolute first signs mom showed were some unfounded hostilities towards her beloved sister. Mom became convinced my aunt had taken more than her share of my deceased grandmother’s assets (which were minimal). She remained angry for FOUR YEARS! This was just not in line with her typical behavior.
2008 - Mom struggled with comprehending and learning any new technology. We thought she’d soon get comfortable with DISH, but she continued to struggle. And she often picked up the tv remote and haphazardly pushed buttons and changed inputs. BUT she was still able to call me and I could walk her through troubleshooting.
About that time I discovered her handwriting had gotten smaller, and she was no longer keeping an accurate checkbook. She was rounding up all entries.
We bought her a digital camera. Showed mom how to turn it on and take a pic. TWO STEPS. Thought she had it. But she didn’t. Called me a couple of days later yelling and cursing me for buying her the camera.
2010 - I don’t recall now what triggered a visit yo the neurologist but I know it was memory related, and she was fully aware it was becoming an issue. Her father had Alzheimer’s but he also had a severe B12 deficiency which can cause memory problems. I convinced her to go so that we could check her B12 levels. We were all hoping that was what the problem was. Sadly, her B12 levels were fine.
At some point, she stopping putting her groceries in the pantry. She’d stack it all on the counter. Claimed she had no where else to put it (not so). Saw something similar in her bedroom with piles of boxes of toothpaste and moisturizer on her dresser.
We thought all of challenges of technology were just normal age-related changes. But I think now it was truly the beginning of her dementia journey. The personality shifts. The handwriting changes. The checkbook.
She remained highly social and worked out at a gym three times a week. She walked a mile every day. I believe these things helped her remain independent for years. She didn’t reach a point of not being able to live alone until 2018.
She’s still with us. She’s gone from assisted living to memory care (she refused to live with me so her home was sold to pay for these things). She’s now straddling states 6/7 and resides in a nursing home. She’s still ambulatory but rarely speaks.
These events got my husband and I to contact an elder care attorney to ensure all of her paperwork (will, powers of attorney, medical wishes, funeral wishes) were all documented prior to her being evaluated by a neurologist. This was to make sure she was protected; but to also ensure that we were as well since she had been living with us for years. We wanted to make sure that no medical or financial businesses could come after us for any of her outstanding debts.