sometimes refusing to sit on the toilet or chair

acadiapark

This morning my DW, after getting out of bed, refused to sit on the toilet. This is not the first time this has happened. She has also refused to sit down on chairs and couch.

This morning she also refused to take down her pants or underpants. Sometimes she has asked me to help her. This morning she was also experiencing myoclonic jerks during this episode which have recently developed especially in the morning. She told me several times that she did not know who I was. (I had just told her who I was, given her a hug, and told her what we were going to do. Obviously her confusion is getting worse.)

We immediately went back to the bedroom. I knew she would not be able while assisted by me to put on her pants. She again refused to sit on a chair (she no longer can sit on the bed) so that I could put her pants on.

I feel upset by how I handled this morning - I physically drew her down onto the toilet seat. She immediately urinated as I knew she would. I likewise had to draw her down onto the chair.

Another complicating factor is that she has had a number of vasovegal incidents where she has collapsed to the floor from prolonged standing. So I am anxious when she begins to stand for an extended time.

Advice will be greatly appreciated.

CatsWithHandsAreTrouble

My mom refuses to sit sometimes too and it's so frustrating, I feel you! My dad has had to physically put her on the toilet a few times (usually though it's because he's impatient and doesn't want to clean up a mess).

Why can she not sit on the bed anymore? Is it the height of it? Sometimes adjusting how high something is can help the PWD feel more confident about sitting. Mom was having a really rough few weeks where getting her to sit on the toilet resulted in her crying and not sitting. She was afraid that she'd be on the floor, doubtful that the toilet was actually behind her because it was so low. We got a seat riser for the toilet and she is less reluctant to sit down. She also had trouble sitting on the bed because it was too high so we lowered it.

Also, what's the visual contrast of the places you want her to sit and the area around it? PWD sometimes have a hard time discerning where one thing ends and another starts if it's the same/similar color as each other. If, for example, the toilet is the same color/contrast as the bathroom floor, DW might not be able to tell there's something there to sit on. I think I've seen solutions say to mark out the edges of things with a contrasting color, like edges of the sink. Conversely, if the area is too cluttered, she might be getting overwhelmed with things to look at. 

Something I've noticed with my mom is she usually doesn't want to sit down when she's anxious. If DW is constantly confused on who you are, she might not feel it's safe to sit and stay a while. How is her anxiety levels like when she doesn't recognize you? Is this new confusion or something that has been slowly progressing? UTIs and other infections can happen of a person doesn't pee as frequently/when they should. I know UTIs can make a PWD extra confused without any other symptoms visible. If you can, see if you can get her in for a urine sample and make sure they can get a culture of it, those are more conclusive.

One thing that I do that helps mom sit down, is to do the action myself while telling her to sit. I say "sit down," and sit next to where I want her. Sometimes this triggers her to mirror me and she'll sit. Another is if it's like the dining room chairs, we have her stand in front of it and slowly push the chair to the back of her knees while calmly telling her to sit down. We do this just so she knows it's there, we're not forcing the chair into her and if she pushes against it instead of sitting, we move it so she doesn't lose balance.

I'm so sorry she has those other symptoms, myoclonic jerking and collapsing from standing too long. I'm unfamiliar with those so I can't share any info. I hope what I've shared can be a good starting point for you. Good luck!

mommyandme (m&m)

Sounds like it might be fear of falling, sometimes.  Maybe toilet rails could help her ease herself down.  Also possibly a walker near the chair/couch might help her feel steady as she sits and gets up.  

My LO also had syncope when she stood too long, in front of the sink etc…and/or if she was stressed for some reason.  it was the reason I called hospice in.  I had to use the transport chair more and more to eliminate falls.  

It’s difficult to adjust to new issues that arise with the decline, we understand. I’m very sorry for this source of frustration and the challenges that come along with this stupid disease.  

Muncy

Thanks for the responses. They were helpful.

I bought a toilet rail and was able to use today for first time. It worked well!

jfkoc

Wonderful. The problem may have been fear. 

I would not  use a walket as an aid for chairs since they roll but do find a chair with arms that is not low that your wife can back into and get out of. 

Re the bed...you can buy a short rail that also goes under the matteress online.

Lone Caregiver

Oh boy, this is a delicate topic for me as I mop up pee and poop every dang day and night and strip the bed at least once a day.  I do not think he is afraid to sit as I have a portopotty that is higher that he can sit on but he never wants to use it.  Of late he has taken to standing while pooping and of course thats a disaster.  

He is difficult to wake up and tends to sleep for extended period of times and then is soaked through his clothing and bedding.  If I try to change him and disturb him he gets violent and very irritated and then its a real battle.  He just started the punching thing in the last three months or so.  

I do wonder why he sees toilets everywhere where there are none.  He will sit and pee off the side of his bed, in his closet, down the floor vents, in a corner anywhere etc.  Hes had a couple of poops where he makes it into the shape of a snowball.  

Its strange how the minds work, or don't.