The Downward Spiral

GothicGremlin

Only my gothic gallows sense of humor is going to get me through this.

The summer has seen the rapid decline in my sister, with the worst being from July to August. There was a brief plateau, and now she's heading down again.

She was diagnosed with early onset Alzheimer's in Aug. 2018, but I suspect (and worked backwards), that she was in the earliest stages as far back as early 2017. I know she was at least at the MCI stage by mid-2015. I can't pinpoint anything previous to 2015.

Even though I know that early onset seems to go faster than others, this just seems so incredibly fast to me. According to the FAST chart, and other charts that I look at, she's showing most of the stage 6 symptoms (a-e). I think she hit stage 6 sometime around this last May.

As of today she can't find the bathroom. Last week she couldn't find the shower, so this is an escalation. She's forgotten what the refrigerator is for, and can't fathom why we'd have rugs. Labels and pictures are now our friends. There's also the usual clothes on backwards, and why can't we wear three bras at one time? Well, we can, I suppose, but it's customary to wear one at a time. And really, all clothes are starting to become somewhat mysterious. The clothes orientation issues have been going on for awhile, so that's not new, but the wearing of multiple bras and pants, etc. all started this month.

Directional stuff like "where is the bathroom" and the "what is this for?" aspects that are also new within the last month.

I'm not really sure that I'm asking for anything here, except maybe a "has anyone else experienced this level of quick decline?" I feel like I'm mostly "on it", but over the last month I've been thrown for a loop many times with new behaviors and deficits. I've managed to get to to the doctors/dentist this summer too, (which are separate ordeals). I guess the good news is that besides the Alzheimer's, she's pretty healthy. No UTIs either because I was wondering about that so I had her checked.

I'm contemplating memory care. We're almost at the end of my comfort zone, and more importantly, my ability to give her the care she needs.

mommyandme (m&m)

I’ve heard that early onset moves much quicker than average.  I have no experience with it but hopefully wiser members will chime in soon. 

So so sorry.

Arrowhead

My wife was diagnosed in July of 2016 at the age of 61. Her memory issues began no later than January 2013. I think she’s now approaching stage 6. She’s had the same issue with clothing for quite some time. During 2020 her symptoms escalated a lot faster than they had up to that point. So far this year they have stayed relatively steady. A few symptoms have actually improved but I know that it will last. She went through a period of a year and a half where she tried to walk to her deceased parent’s house several times a day almost every day. For a long time she denied that we’re married to each other but now she seems to accept it. One of the things that makes caregiving so frustrating is never knowing what’s going to happen next. You just never know what’s going to happen when or for how long it will be or if it will be permanent or not. All we can do is the best we can.

GothicGremlin

Thanks, you guys.

I'm sorry about your wife, Arrowhead. 61 is so young.  From what you say, it sounds like your wife is progressing slightly slower than my sister, but she's in the same ball park as my sister.

You just never know what’s going to happen when or for how long it will be or if it will be permanent or not. All we can do is the best we can.

 So very true.

IDrive3

I'm sorry about your sister.  My sister was diagnosed a little earlier than yours - 2017 - at age 55.  She started having problems probably in 2014.  She was probably in stage 3 when diagnosed.  She is also showing many signs of stage 6.  She doesn't have incontinence, but worries about it, so she uses the "protection" anyway.  (She worked as a psychologist & did dementia training for staff and still has a surprising grasp of what is happening and what is coming.)  It was mostly a steady decline, though we did have some rapid changes within the last year.  We both had Covid last fall right after our Dad died from Parkinson's.  Yeah.  That was a fun time.  That's when she started getting lost in the house we've lived in for 20 years.  During the night, she could find her way to the bathroom, but couldn't find her way back to her room.  She could find my room, though, which is right between her room and the bathroom.  Some mornings, she goes in the bathroom only to come out a few minutes later saying she doesn't know what she should be doing.  She had another drop this summer.  Mom fell and broke her hip in June and then spent 2 months bouncing between the hospital and 2 rehabs.  During this time, Sis started referring to Mom as "Grandma" - Mom has no grandchildren.  Now Mom is plural - "the ladies".  There have been 2 times that my sister has asked me if J___is nearby.  I'm J___.   It stinks.

GothicGremlin

I am so sorry to hear about your sister, IDrive3, all of your sister's experiences are so very familiar. And neither your sister or mine are very old.

This summer was rough. My sister's steep decline is so rapid I can almost see it on a daily basis.

Even though she's got so many deficits, she still knows who I am, and she knows all of our extended family members - she doesn't even stumble over our names (yet), kind of a feat with her primary progressive aphasia.

My eyebrows raised a little when you said your sister now refers to your mom as "the ladies".  We have a couple of people (they alternate) who clean the house (I still work and need them), and my sister refers to them as "the ladies". The caregiver we have is "the little girl" because she's in her 20s.  All other women are girls. Doesn't matter if you're 35 or 85, you're a girl.

Alzheimer's is a weird and horrible disease.

IDrive3

We have "helpers" (I don't call them caregivers when talking to her) come when I go to work.  My sister does not like it when I leave.  She calls the caregivers "kids" or something like that, too, except the one that she says is like a grandma.  We've been getting the helpers from 2 agencies.  We've probably are getting close to 25 different people between the 2 agencies in the last year and a half.  Sometimes, Sis thinks that she's training the helpers like she did at her job, and is frustrated by the lack of direction from the supervisors!  Or else she is getting upset because she feels responsible for making sure the helpers are entertained while they are at our house and she doesn't know what to do.

CoastFog

IDrive3, fascinating that my mom, who has Alzheimer's not early onset, exhibits many of the same symptoms. Interesting that certain areas of the brain seem to be affected by these dementias. 

The part of the brain that recognizes your surroundings. 

The part of the brain that knows how you are related to the people you are looking at. 

And the part of the brain that perceives of each person as a single individual. Mom has been doing that a lot lately, referring both to herself and a shadow self next to her. The other day she actually said, "If this person dies, does that mean I do too?" gesturing to a space next to her. The distinction she makes between these entities intrigues me. At times she also thinks of me as 2 different people.

Any other specific cognitive processing changes people have noticed?

IDrive3

My sister's ability to write went pretty early.  She had a hard time with her signature.  Now, she can't even write on a line.  She writes above it, below it, starts above and slants downhill.  she used to love painting.  For at least 2 years, she has not been able to make her paintbrush go where she wants it to.  She also had trouble reading pretty early.  She can usually read individual words, but can't track from one line to the next.  Someone told me that people with early onset often have more difficulty with spatial things like reading and writing.  Has anyone else noticed that?

Another thing that caught me off guard... There have been a couple times where I was trying to hand her something, maybe a toothbrush, and she grabs my hand/arm as if it were the object I was handing her.

GothicGremlin

I've certainly seen that with my sister, IDrive3.  She lost the ability to write very, very early on. The other weird thing with her writing is that her first name has two of the same letters together - like Ginny, Cass, or Missy. When she could still spell and write out her name, she could write the first letter (like the first 'n' in Ginny), but could not write the second letter. It happened every time. The first double letter was fine, the second one was a no go.

She lost the ability to read early on too. Now the only things she can read are very large labels with only a few words in them. Even then she's a little iffy.

Her sight is also compromised. We went through her closet not long ago to get rid of clothing that doesn't fit anymore, so I was pulling out shirts one at a time. I'd say something like "how about this one?' and she couldn't track it until I shook it a little. Once the item moved, then she noticed it.  If the item didn't move and I asked "how about this one?", she'd respond with "which one?" And I was standing not more than a foot away from her and holding up only one item. 

amylmaris

Oh goodness. I’m not alone. My mom 91 has been living in ‘not reality’ for a while now but as soon as we put her in a care facility she went down fast. I’m looking for tools to have a conversation that doesn’t bring me into the crazy house with her. I need to unentangle—it gets very personal and spiritual fast, Amy ideas/tools/resources?

M1

Amylaris, welcome to the forumn. Thhis is a very old thread from over two years ago. You will get more responses if you start a new discussion. I will see if I can copy and repaste it for you in a new thread.

GothicGremlin

You're not alone, Amylaris. We're all here with you.

Seeing this old thread from a year and a half ago shows me how far Peggy's declined since then. So much more has been lost. I need to do another update....