Just Wondering...(1)

Tfreedz

Ok, so my mom went to the hospital in August with Sepsis and pneumonia, no UTI. Prior to hospital she was living on her own and caring for my brother with DS. 

After 19 day hospital stay, mom no longer recognizes her own computer, iPad or most of her belongings. I realize from these posts that an illness can cause confusion especially if someone already has cognitive issues. But 5 months later, my mom never regained her memories. She was obsessed with playing computer games and now she still doesn’t believe she ever touched a computer. I tried turning on the games but no recognition. She has note books of every score she received on these games up until the day before she went to the hospital.

She was seen in Nov by a neurologist who diagnosed her with FTD but that was mostly based on my account of her symptoms and a vague MRI. She has no memory past her childhood, no clue where she worked, who my father is, or any of my childhood stories. She calls me my brother’s sister rather than her daughter. She has always been extremely eccentric my whole life, and I feel that is what the neurologist took for FTD symptoms. I guess I’m just confused as how someone forgets playing computer games non stop just because they get an illness. Thirty years ago, my mom would drive around to all restaurant lobbies to play ms Pac-Man it was a whole day obsession. She would fill notebook after notebook with stock market numbers and weird notes from CNN. But it was only in the last year that she lost her short term memory and I became concerned. 

Has anyone ever dealt with this? Could her obsession with numbers and notes for years have been an early sign of FTD? The neurologist said her talking to strangers was a sign of FTD but she did that my whole life so I’m very confused if that was just her or FTD. The doc also said FTD has no meds that help or slow progress. My mom is fully mobile and has no issues with speaking which is a big symptom of FTD. I feel like they are just guessing....

SusanB-dil

Sorry you are dealing with this...

Depending on severity, sepsis can cause permanent brain damage.  Can you get a second-opinion?

punch up "sepsis complications" and from CDC.gov info and several other reputed sites it comes up as:

Disabling muscle and joint pains. Decreased mental (cognitive) function. Loss of self-esteem and self-belief. Organ dysfunction. Long-term effects include sleeping difficulties, pain, problems with thinking, and problems with organs such as the lungs or kidneys.

abc123

I'm so sorry this is happening to her. I have never dealt with a situation like this one. I just want you to know I'm thinking about you and you are both in my prayers.

abc123

ttt

Tfreedz

Thanks ABC, you’re awesome!  I suppose it’s not a pressing issue anymore. Mom moved into AL last week and now seems very content and has made a few new friends who are reminding her to go to activities and socializing with her. I just had this nagging feeling like what if it was misdiagnosed or something else that I should be aware of. I wasn’t ready to settle or accept the diagnosis when she was so adamant on going home but now that she is happy, it helps. Just so hard to see the confusion that seems to have happened so quickly. She has a follow up with her memory care doctor in May so I’m sure I will discuss it more with her th3n.

Susan - I did not realize sepsis could do that and I did look it up as you suggested. Shocking that is could damage the brain as I’m sure it did, thank you for bringing it to my attention.

On a side note- Mom has a new male friend at her AL who has taken it upon himself to be her protector and wants to escort her to and from meals! My mom is not pleased with this but doesn’t want to be rude so I will have to contact admin and ask them to talk to him. He actually asked her if he could “tuck her in”, lol. I’m glad my mom is with it enough to refuse!

King Boo

It is possible that your mother had never diagnosed Aspberger's syndrome - in other words, wasn't 'neurotypical' and had some neurological issues that are part of the autism.

One of my LO was like that.  Very OCD with obsessions, eccentric social behavior, no insight. But functional to have a job and family.

They just didn't diagnose back then.  It made the dementia diagnosis harder.

Just a thought.  

Tfreedz

Wow, that’s very interesting King Boo. I never thought about that, I will have to google the traits and research. 

I do know that when I was 12, my father “ran away” to be a cowboy out west and with another woman, my mom went into a deep, dark place. She never was treated for depression, she kept working and did the best she could with a disabled son and me. I feel that I raised my brother after that point, my mom was so out of it all of the time, worked nights then disappeared for hours on end every evening, later found out that’s when she was searching for MS.PacMan machines in lobbies. Then her mom got pancreatic cancer and she cared for her for 6months until she died. Right after her dad whom she always claimed was the only one who ever loved her unconditionally got dementia and died rather quickly.

I begged her for years to speak to a therapist but she refused. She always had a pleasant attitude, wasn’t like she was tearful or anything, just very odd escape techniques, obsessing over games, numbers, avoiding anything to do with her feelings. Her one brother who wants nothing to do with her just tells me she was a very odd child, always walked to the beat of her own drum.

I’m curious now if Aspergers had anything to do with her behavior.  She was always called eccentric or quirky but like you said, back then people weren’t diagnosed.

King Boo

Here is a link that talks about a parent with Aspberger's.  I have another one somewhere, but cannot find it.

Children of a parent with ASD / Asperger’s Syndrome | Asperger Partner

I only toss it out as food for thought.  I found that becoming my LO's parent at the beginning made me a little resentful - because during my childhood, let's just say things were patchy and life difficult because of the oddities.

The lightbulb kind of went off during caregiving and a neuropsychologist, who was doing dementia testing, was very helpful with insight.

And understanding this kind of let me make peace with - well, what was not there as well as what was-during childhoold.  And my caregiving journey morphed into a somewhat healing one and I was able to let go of some old resentments.

There could be other reasons, but I just thought I would share.