Dementia is just so cruel.

ESkayP

My mom has always suffered from anxiety. She learned a few coping mechanisms over the years and self-medicated with wine in the evenings. I think she was drinking a lot more than I realized. We still don't have an official diagnosis, but whatever her kind of dementia is, I find it particularly cruel. Mom often gets confused thinking she's at work, thinking LOs long dead are still living, but somehow she is still aware that her brain is failing. I can deal with her confusion and fib when necessary, but I don't have any idea what to say when she tells me she thinks there is something wrong with her brain. It seems like we can talk about it for a little while. I explain that we are trying to get a diagnosis, but until then, we just have to get by day-to-day. I remind her that she's safe, and I'm going to visit often. It's frustrating for her to articulate how she feels because of the aphasia. She loses her words and wants me to fill in the gaps. I do the best I can. Today she said, "I used to be more." It's heartbreaking. She was an English teacher for 36 years. She and Dad had an active social life. Now she can't read a clock and forgets my name. It seems if Mom were blissfully absent, it would be easier on her. The fact that she knows something is wrong and is afraid of her disease, afraid of slipping away is cruel. That's all I wanted to say.

Quilting brings calm

This stage is particularly cruel for just that reason. Mom has had this for at least four years and probably more. In 2020-2021she knew she was slipping and she cried about it, was anxious about it. She described her brain as flying in different directions. She commented sadly on how confused she was and why wasn’t she getting better.

We got her on a good mix of anxiety and depression meds in late 2021 and some of that stopped. Plus she’s just come to think of her current situation as normal now since it’s lasted for so long.

ESkayP

@Quilting brings calm I'm actually trying to figure out exactly when we knew something was wrong. Mom knew she was slipping before I did. I had a surgery in 2018, and Mom drove out to my place several times to help me out. I remember reading Rebecca Solnit's The Faraway Nearby and thinking it sounded like what I was going through with Mom. That was also the year Mom started writing things down in a journal so she wouldn't forget them. I decided it was just reminiscence, a factor of her aging. We took a couple of vacations with my sister, and I noticed how Mom seemed particularly reliant on us. She wanted for us to make all the plans, and she would just go along. I thought she was used to tagging along because of her myasthenia gravis. Then COVID happened, and because of the MG, her neurologist insisted she be isolated. I visited from a distance, but it wasn't the same. I know she lost ground socially and emotionally. Everything was beginning to open up when she broke her hip in the summer of 2021. While she was recuperating from surgery, she started the "sundowning syndrome" with confusion and delusions in the evening hours. Her health team gave her cognitive tests, and she did very poorly. They suggested AL, but I was still in denial and Mom was adamant that she would hate it. I wanted to believe Mom would get better once she could interact with people again. The problem was that Mom found excuses not to go out. Every time I planned something, she would be too tired or sick to her stomach. She started lying to her friends that she had doctor's appointments. All through 2022, I exhausted myself running her errands, doing her bills and business, trying various doctors to treat her symptoms which suddenly included extremely high blood pressure, and handling her bizarre phone calls at night. If 2018 was the beginning of our recognition, I have a feeling her symptoms began a year or two before that, and we just reasoned them away. I'd say Mom is five years into it. From the descriptions on the Mayo Clinic website, Mom has behavior in some but not all the moderate category. Maybe her neuropsychologist will have more information when they get the results of her LP, although I don't know if there is anything they can do to make her more comfortable.

Quilting brings calm

@ESkayP My parents moved out of state in 2016. The first almost two years were ok, and then mom started having issues. Mom and Dad called us down on an emergency trip ( 12 hours each way). She had an episode of confusion, anxiety and inability to follow conversations which her doctor explained away as going off gabapentin cold turkey but was actually a mini stroke with aphasia. She seemed to recover ok a while after that. Phone calls seemed a not repetitive and off a little. Then several months later phone calls started coming where she couldn’t balance her checkbook, and so forth. Then she no longer felt at ease in their camper ( parked permanently in a campground). I tried to persuade them to move the camper back here. No luck. The first of September 2019, friends of theirs helped them move - into an independent living apartment. Which was really an over 55 community with a housekeeper and a clubhouse. The first week I got a call from the housekeeper- mom couldn’t load her pill reminder case because she was too confused. Mom had also been a recent frequent flier at urgent cares and the ER because she thought she had a UTI. The doctors kept saying no. We went down there ( took time off work again) and took her to the doctor. Supposedly no UTI and just delirium from the move. She ‘just needed time to settle in’. My sister ( not working, on disability) went down a week later, mom just kept getting worse. Sister took her to the doctor, no UTI, probable dementia. She was there for a couple weeks. My sister couldn’t sleep at night because mom wouldn’t let her, so she went to a hotel one night. Mom wandered off that night in an altered state, and the police brought her back from a neighboring apartment. Dad slept through her leaving and only woke up when the police pounded on the door.

We moved them back here within 9 days and we took her immediately to a hospital here. Urosepsis. She improved quite a bit after treatment.

I tell you all this to answer your question about ‘when did this start’. The answer is probably a couple years before you really noticed. Mild cognitive decline is considered stage 3, lasts 2-7 years, and is the first stage when close family members can tell something is off. People who live out of state can’t tell and doctors usually can’t tell - because the ‘patient’ can pull it together for phone calls and doctor visits. Covid isolation would make your contact with her similar to someone out of state.

Mild dementia is stage 4 and that’s when it becomes obvious to doctors and people who aren’t in constant contact. That’s probably when your mom started self isolating from you and let you handle all her errands too. Mom seemed to be stage 4 to me once her urosepsis was treated. That 2019 fall debacle was when I realized this wasn’t just old age or anxiety, and that it was dementia. My last four years have been what you describe for 2022.

ESkayP

@Quilting brings calm That sounds awful. You've really been through an ordeal. I hope you get to have some good days with your mom and find solace in the fact that in spite of the hardship getting there, the guesswork about her diagnosis is over now. That has been the most upsetting thing for me, not knowing what's wrong with Mom and whether it's something they could be treating like a UTI. I visited Mom today, and she was in a better place emotionally than she was before. I'm sad that a couple of hours here and there are all we get, but I have to come to terms with that. Thank you for sharing your story with me. {{{{hugs}}}}