Transitioning from 5 to 6

MrsAnnabelLee

I believe my mom is beginning to move from stage 5 to 6. I’m curious what this process has looked like for others on here. Did you experience a sudden decline in ADL abilities or was it a more gradual process? Anything you noticed at the time would be interesting to me. I guess I’m trying to prepare myself.

LaurenB

It's more of a transition over time.

GothicGremlin

I agree with LaurenB, it's been a transition over time.  What I've noticed about any transition is that I'll see a harbinger of a behavior that's to come.  Like - she's now fairly incontinent.  Six months ago she wasn't. She'd have a random accident and then nothing for even a couple of months. Then another accident. Now, it's almost every day.

A few weeks ago her decline seemed noticeable even from day to day, and this went on for about a week. Then she stabilized and bounced back a bit.  She's definitely in stage 6 now, no question about it.

abc123

Dear Annabel, I’m thankful you asked! My Mom is stage 5 according to her neurologist. I am seeing new behaviors and it’s weighing on me. Would you please share some of the changes you see in your Mom.

My Mom no longer knows how to get into bed properly. Whatever spot she happens to sit down on, is where she just plops down. She doesn’t seem to know where her head should be and no longer uses a pillow. She curls up in the fetal position a lot. She is not aware of what she is eating. She is not always aware of soiling herself. She can not walk unless she has something to grab on to. She uses a walker but for short distances she has to lean on furniture or the wall. These are changes that I have seen in the past 6 to 8 months. I would appreciate anything you can share. Thank you.

abc123

After a 12 day visit, my parents left for home this morning. For the first time I witnessed my Mom had no idea how to get in the car. It took Dad and me about 20 minutes to get her in her seat. Another loss.

MrsAnnabelLee

Yes this is all very difficult to watch. I’m sorry you’re going through this too. 

My understanding is that the main characteristic of moving into stage 6 is the loss of independence with Activities of Daily Living (ADLs). In stage 5, people can still generally bathe themselves, feed themselves, dress themselves, etc. but in stage 6 more assistance with these tasks is needed. In our case, my mom has stopped bathing and needs help remembering to shower, and possibly even help with showering. She’s become incontinent as well. We’ve also noted some personality changes and an increase in delusions and compulsive behavior. 

During my most recent visit with her I showed her a picture of her brother and sister in law. She could not remember her sister in law’s name. My mom and aunt have been close since they were in college. It’s always a kick in the gut to see these new bits of evidence of decline. 

lovebonita

Hi,

My Mom is in stage 6c.  Do an online search for functional assessment staging test, it will describe the stage progression and has helped me better understand where we are at.  Not everyone likes to know where the progression is at but for me I needed the knowledge to prepare myself and understand better for planning and coming up with a strategy of care for her.

The first thing I think I started to notice when I realized she was progressing into stage 6 was when things she had previously been doing successfully were no longer happening.  She couldn't bathe herself alone for awhile but at this point putting her clothing on or off is never done correctly without help.  Eating is also different, for instance if we give her a hot dog and cottage cheese we will look over and see her trying to eat the hot dog with a spoon or she will take a sandwich completely apart not understanding to pick it up and eat it whole. She has also became a lot less verbal, she still speaks but it isn't as conversational, sometimes its not even in complete sentences.  Stage 6 really progresses a lot based on where they are at in their toileting too.  A big tell was when my Mom could no longer remember the steps necessary to go to the bathroom.  For instance, she may sit down on the toilet to go potty without first pulling down her pants, she may put the lid down and then sit down, she has forgotten how to wipe herself or what toilet paper is used for, etc.  - that is why we put her at stage 6c specifically.  Her neurologist confirmed it at her last check up too when she did her assessment.

The funny thing is that although she is at this stage she still has good days occasionally, like yesterday and today when she is pretty verbal, has big smiles and seems to follow the conversation going around her, today she even initiated conversation which was so nice.  Its a good reminder that this disease is not easily pegged and a person can exhibit signs of several stages at once which can make it hard to pinpoint and assess.  As good as the last two days have been with her she still was the same in the bathroom, with showering and at mealtime so I believe you are on the right track to look at the ADLs and continue to assess.  

Battlebuddy

My husband is at stage 6c also and Lovebonita gave a very accurate portrayal of what the middle of 6 looks like. For us early 6  was all about the ADLs and then toileting deteriorating as we moved to middle six. I wouldn’t say he is incontinent but is beginning to have occasional accidents at night so we may be moving into late 6 soon.

bandit47

This thread has been really helpful to me. From reading these posts, I'm pretty sure my mother is in 6c or 6d. There is no neurologist at her MC so I'm left to figure this out on my own. Also her facility only allowed virtual visits until about 6 weeks ago so I didn't see the changes as happening gradually as I might have otherwise. My mother has been aphasic since before her Alz. diagnosis two years ago. Now, I notice she can't put her hearing aids in herself, won't take a shower unless forced, recently became unable to undress or dress herself without prompting and assistance and has become increasingly unable to toilet herself and is urinating in her Depends occasionally. She doesn't know she has grand children even when I show her pictures with them. She indicates she never had a husband, which she did for 52 years. She occasionally doesn't recognize herself in recent pictures. This all makes my visits with her more and more difficult since she sometimes doesn't know I'm her daughter. The strangest thing to me is that even though she hasn't been able to speak clearly for over two years, she can read children's books clearly without mispronouncing a word. But this feat also is beginning to change as she mispronounces the occasional word.

ButterflyWings

Here is one summary version of the FAST scale. DH is 6b-6c also.

https://www.compassus.com/sparkle-assets/documents/functional-assessment-staging-fast.pdf

French

I think we are also transitioning. It’s certainly different because my partner is only 51 and eoad is quite different.

I notice changes everywhere

- dressing has been difficult for one year. At the beginning it was only the belt, or Clothes in front of the back. Sometimes he forgot to put underwear. This week, he came without trousers and when I ask him what he has forgotten, he answered « my shoes ». Dressing becomes very long.

- one year ago, I had to remind him to shower every morning. 3 months ago, I noticed that the towel was smelling and had strains almost every day. I attended his shower and understood, he only washed his arms. Now I guide him for the shower and it’s not easy having him proceeding step by step

- about toileting, he now often forgets to flush, and this week as he was smelling I ask him to shower before putting his pyjamas. His buttocks were full of poop. I guess (and hope) he forgot to wipe himself.

- about eating. He still uses the fork, the knife is more and more forgotten when there is nothing to cut and I can often see him pushing the food with his fingers.

- speaking is less and less fluent, and sometimes he has forgotten what he wanted to say before the end of the sentence so that we can’t get what he meant.

He recognizes everybody, even people he doesn’t see often.

For me this is very gradual. Perhaps we are already stage 6a.

French

A question about the fast scale. I always found it strange that the sub steps of stage 6 are presented as if they were one after the other. For me the a,b,c are progressing in parallel or simultaneously, it’s quite logical as they are related to different abilities.

D and e are really different sub steps.

MN Chickadee

It was a gradual process for us. First we noticed my mother hadn't been bathing much. After a few attempts to get her to do it with light supervision it became clear we would have to now make major interventions on that front. She had a few incontinence accidents here and there (at first some urine leekage, gradually increasing) and then a few bowel accidents and then all of a sudden it became the norm. The other ADLs all went during this process (grooming, dressing etc.) It was probably about a 4-6 month process to fully move from stage 5 to 6.

Kimixuan

I don't know where my Mom is at now. She had a brain surgery January of this year 2021. After she got discharge from rehab she has a cognitive impairment., short term memory loss. April, I noticed the changes in her behavior. she does not speak much. She can not walk by herself now. She can not get up from bed or chair by herself. She pee every time in her pad and she does not tell me if she wanted to pee or she already pee. I bathe her and change her clothes. She forget my name once in a while. I scheduled an appointment for her this June 7th to see what she have. I am hoping she just loss her memory due to her brain surgery. I am so worried right now since I am the only sibling here in the U.S.

Quilting brings calm

Butterfly - I looked at your chart.  My mom can’t do  anything in 4 and hasn’t for over a year and a half.  But seems  capable of everything in 5.  Although that could be because I’m not the one getting her dressed since  she is at an ASL.