Just normal evolution

French

Here are some news and one question as I know you always have.

Since I have been to Tunisia and fixed the medical follow up, everything is fine. No more violence, he kisses everybody and is smiling the whole day long. He sleeps better.

There are some slow (slow is not the good word as the global evolution is in fact very fast, perhaps I should say "normal") evolutions: the speech is less and less understandable and no longer relevant; he walks slowlier;  he doesn't know how to use the cutlery anymore; he now needs help even to pee.

But the last days, a new evolution appeared: the caregivers can't have him seating. They follow him to feed him, that's OK they can manage it. The issue is more about dressing him and toiletting. The caregivers found only one solution: having him lying on the bed to dress him. It is very tiring for them. About toiletting, they don't have solution if he doesn't want to seat. As soon as their back is turned, he undresses and poops anywhere in his room.

One of the two caregivers is discouraged and has put depends on him, the other one disagrees and continues to look for solutions.

I have asked for an appointment with the neurologist and the psychiatrist, because I think it is linked with the Moving Legs Syndrome.

But pehaps, you found other solutions than drugs ?

M1

French I think you are right to involve the doctors to make sure that the new problems are not side effects of the medications. 

thinking of you in the heat wave, stay safe

dayn2nite2

Of course a doctor would need to say, but I think it's normal progression and I think, despite what the one caregiver feels, that Depends at all times is necessary at this point.  Just like I would tell a spouse or other family member of a patient, it's ridiculous for anyone caring for a PWD to have to clean poop up from anywhere but a bathroom on a regular basis.

Ed1937

It sounds like progression to me. But definitely talk to the doctor to be sure there isn't an easy fix for it.

ImMaggieMae

Agree with dayin2nite2 about the Depends. The pull up ones are just like underwear. They make that part of this awful disease so much easier. An extra pad can be added at night if needed. We use the Always brand #6. It works well and usually requires only one change toward morning.

French

I ear you about the depends. I think the young lady of 24 can't admit to put depends to a man of 53. She tells me there are not enough accidents to justify depends.

Yes, incontinence is normal evolution, but he still ask to go to bathroom, the issue is that he won't seat.

Did you experineced that, a PWD no more able to seat ?

Iris L.

Perhaps provide a higher level toilet seat and also hand rails to help with standing up.  There are accessories that can be purchased so they don't have to change the toilet.

Iris

toolbeltexpert

French that sounds like it would be very hard to care for someone with that behavior. I am impressed with the work around for him to eat. But I don't  know of a work around for the toilet.  There are still alot of others who might have had that problem. Sorry your having it so rough.  My prayers will continue and pray that this new thing won't  last long.

JoseyWales

French, your partner is doing EXACTLY what my DH did. By last February, when he was still home, I had a heck of a time getting him to sit on the toilet. I'd get him to sit down and he'd immediately get back up. He started peeing in the garbage can, the floor, outside.... just about everywhere. I'd eventually get him on the toilet where he'd poop.  I didn't move toward depends, because he wasn't wetting in his pants at all. 

After he moved to memory care in March, he was still peeing everywhere, but they could eventually get him to sit on the toilet to poop. The started putting depends on him after he was there about a month. They were usually dry, but he had no problem wearing them. Honestly, I think he was past the point of noticing. 

I know that for at least the last 6 weeks he's been pooping a little in the depends, and some of the caregivers have told me that he'll hand them his poop. Ugh. I've been there for several poop moments in the last couple of weeks, and I can usually get him on the toilet once I notice signs that he's about to go. But it's not always pretty.

I think now it's 50/50 on if he pees in the toilet or in the depends. I don't think he's peeing on the floor anymore.

I say go for the depends. They can still treat him like he has regular underwear on, but it's the just in case backup.

abc123

I have heard about some PWD losing the ability to sit down any where. Toilet, chair, in a car. They just can’t sit down any more. 

I hope things get better or at least easier. 

Battlebuddie

French, 

  I agree with Iris that sometimes a loved one goes to sit and it feels like they are falling so they stand up again. For us putting a higher toilet seat and guard rails on either side helped him to keep sitting. The higher toilet seat just sits on the existing seat with the lid up. 

 That might buy you some time but the whole understanding of toileting seems to be breaking down. It’s such a weird thing when it happens, and peeing and pooping in other places then a toilet is part of that. 

   Even if his body can still do the toileting, his brain is forgetting how it all is supposed to be done so in my mind it’s a moot point . I would get the depends on him because once this process begins to deteriorate, you are almost to incontinence anyway. 

  Good luck. It’s a particularly trying and difficult time making this transition .  

ImMaggieMae

You mentioned that his caregivers had problems seating him for other things than just toileting. Could he be experiencing pain in his lower back or knees and having trouble bending?

toolbeltexpert

French I was reading some old post and came across this.

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147539859

I had been thinking about your dh and wondered about whether it might be a visual thing or pain. I was in a closet and turn quickly and there was a black rug on the floor and for just a sec it looked just like a hole in the floor. I have heard one way to keep a pwd from going in or out of a certain area a black Matt can be used as to the pwd it looks like a whole.

This probably isn't the case for your dh I am just think of you and continue to pray for you both.

Jo C.

I am sorry to hear about the onset of yet more difficult changes.  If your Partner is having severe visual difficulty which may come with dementia or damage to the posterior cortical area of the brain, that would explain the dreadful difficulty for your Loved One with attempting to sit or do any spatial accommodations and why he is more able to be cooperative when he is lying down flat.  Here is some information regarding eyesight symptoms in dementia and also what happens with damage to the posteior cortical area of the brain:

From Harvard Medical Center Department:

https://www.hebrewseniorlife.org/blog/dementia-alzheimers-and-eyesight-symptoms-and-how-help#:~:text=Different%20types%20of%20dementia%20can,Diminished%20ability%20to%20detect%20movement

Posterior Cortical Atrophy Symptoms From Alzheimer's Assn:

" . . . The symptoms of poserior cortical atrophy can vary from one person to the next and can change as the condition progresses.  The most common symptoms are consistent with damage to the posterior cortex of the brain, an area responsible for processing visual information.  Consistent with this neurological damage are slowly developing difficulties with visual tasks such as reading a line of test judging distances, distinguishing between moving objects and stationary objects, inability to perceive more than one object at a time, disorientation, and difficulty maneuvering, identifying, and using tools or common objects. Some patients experience hallucinations . . . many people with posterior cortical atrophy experience anxiety, possibly because they know something is wrong . . . "

From Mayo Clinic"

. . . "Posterior cortical atrophy changes a person's ability to purposefully process visual and spatial information. This difficulty is secondary to atrophy of the back (posterior) part of the brain. This is the region responsible for visual processing and spatial reasoning.

Posterior cortical atrophy is most commonly due to Alzheimer's disease (over 80%) but may be due to other neurological conditions, such as Lewy body dementia or corticobasal degeneration."

The inability to process spatial and visual information would be terribly frightening to a person who would have no frame of reference for where the body is going in the space around him.  It would be a good idea to bring this question up with the doctors who are going to see your Partner; they may miss it if they are not looking for it.

J.

French

Thank you all for your insight and your good ideas.

I will speak with the caregivers when I will be there in august. Not sure I will be able to find a booster seat for the toilets in Tunisia. I ask the caregiver, it could be a solution. It the moving legs is the issue, not having his feet on the ground could be the solution.

The floor is light color and the toilets are in the bathroom.

Jo C.

Hello, Ms. French; what is quite useful, is to take a portable commode, remove the bucket, and place the portable commode over the regular toilet - the commode toilet seat would be a bit higher and easier to sit and best of all, the portable commode has arms on both sides so that the person can hold onto them when sitting or standing.

If there is a dementia induced vision problem, this may continue to be an issue for spatial reference and balance, which may cause him fear of not knowing how his body is moving and fear of falling.  I send best wishes and so hope a way can be found to work out for him.

J.

French

It seems that the issue is really the sitting

Yesterday they went to the neurologist. It is a 30 minute drive. It was a real hell . He was crying, screaming, trying to get up : « quicker  quicker ! Help help ! Eh oh … ». The caregiver sent me the video. At the end he was on his legs, disturbing the driver.

This weekend he felt in the shower and was violent again. I hope that the new medication adjustment will help.

Michael Ellenbogen

French you mean alot to me and I took this to my friend when this was first posted. She just got back to me but has a ton of questions. 

Hey Michael

This is indeed a challenging situation for the man and for his care provider(s).

It does sound as though this gentleman has deteriorated relatively quickly.

I have a few questions to see if I am understanding the situation clearly, or if what I am thinking is not exactly what was meant.

Was anything done with medications to get the change in his emotional state that was described at the start of the letter or was there another cause for that shift?

Does he stand to pee? Will he do that at a toilet?

Does he ever sit down, or is it simply that he goes from walking directly  to lying down or do the helpers force him down?

When he poops in his room, is he squatting to do so or is he standing up straight or walking when it happens.

It does seem like there is a possibility of what we would call restless legs syndrome. Do his legs keep moving even when he is lhying down, or is he just really restless and not able to settle down.

Where and when did he used to poop? Was it is daily thing or just every few days?

A couple of ideas. If there is a regular toilet around, see if he can be assisted to sit facing the back of the toilet rather than trying to get him to turn around and sit on the pot facing forward.

It is unusual for someone to be able to pee in a toilet and not poop in one. Is it possible he has arthritis and has pain when trying to sit and trying to stand, so that walking seems easier… Or could he be trying to walk off his discomfort.

Has he been a private man, and is it hard for him to get his poop to come out, which means he keeps working on it and using his hands to try and get it out and away from him whenever it comes out.

Sorry, Michael. I have more questions than answers at this time. If she can let me know what she can, I might be abler to help better.

Teepa

Until There’s A Cure, There’s Care™

Teepa Snow, MS, OTR/L, FAOTA

Dementia Care & Training Specialist

Owner, Positive Approach, LLC

French

Dear Michael 

Yes, this is a rapid evolution when you think that ex was 3 years ago and that we reach stage 6. There is always something new and even if I am far from him, I always follow ne try to find solutions. The medication is often changed, trying to adapt to new comportemental issues. Now I think I have found a good neurologist-psychiatrist team but their prescription are not always well followed by the MCF.

The neurologist now thinks that vaincor is not well adapted to him and changed it with resperidone. she will add another but discovered that memantine hasn’t been given so that the asked to give it 15 days before deciding.

His legs are always moving even when he stands up. Before, when he was sitting, they were always trembling. When he is lying on the bed, it is better.  When they succeed in having him sitting, he immediately gets up eventually turning the table over. I don’t think he is suffering of arthritis because he is only 53 and is still in good shape. I am also thinking to restless legs syndrome.

When he is pooping in the room, in fact I don’t know how it occurred but he takes of his clothes. He does it as soon as the caregiver turns her eyes. 

Trying to have him sitting facing the toilets is a good idea.

He is not constipated and they check it. He still ask to pee but wasn’t able to feel that he has to poop for 1 year now. I had to propose it when he began to rub his belly and also to explain him how to do : sit, push… he stands to pee but hey now also help him, he no more knows how to do. 

Michael Ellenbogen

I just sent your respose to Teepa. Give it a few days. 

French

Today I learnt he is now peeing everywhere  even with depends.

I will be there  in 2 weeks, I think that taking in the face 3 months evolution will be very difficult for me.