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 Help! Hygiene and toliet tissue 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: Help! Hygiene and toliet tissue
Leone - I found out about ataxia when my dad went from the hospital to the rehab place a year and a half ago. I asked one of the nurses about why he wasn't getting himself clean in the shower or after using the toilet. She is the one who told me what ataxia is and then I did more research. If I can find something that I read last year I'll send it to you or post it. I had never heard the word prior to that conversation, and once she told me about ataxia, it put all sorts of behaviors I'd been noticing in a context that made sense. I thought all the things that were happening were just random behaviors and inabilities. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jan 21, 2011 4:30 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: Help! Hygiene and toliet tissue
This is from Johns Hopkins Ataxia Center -

What is Ataxia?
Ataxia is typically defined as the presence of abnormal, uncoordinated movements. This usage describes signs & symptoms without reference to specific diseases. An unsteady, staggering gait is described as an ataxic gait because walking is uncoordinated and appears to be ‘not ordered’. Many motor activities may be described as ataxic if they appear to others, or are perceived by patients, as uncoordinated.

Ataxia can also refer to a group of neurological disorders in which motor behavior appears uncoordinated. Walking, speaking clearly, swallowing, writing, reading, and other activities that require fine motor control may be abnormal in patients with ataxia. Ataxia may result from abnormalities in different parts of the nervous system or different parts of the body, such as ataxic movements due to orthopedic injuries or pain from arthritis or muscle injury.

What causes ataxia?

Ataxia may result from abnormalities in different parts of the nervous system, including the central nervous system (brain and spinal cord) and peripheral nervous system (roots and nerves that connect the central nervous system to muscles, skin, and the outside world). When patients experience abnormal walking or uncoordinated use of their hands or arms, dysfunction of the cerebellum is often responsible. The cerebellum is a rounded structure attached to the brainstem with a central portion (vermis) and two lateral lobes (cerebellar hemispheres). It sits beneath the back of the cerebral hemispheres (occipital cortices). The outer surface of the cerebellum is a continuous layer of nerve cells called the cerebellar cortex. The cortex is a three-layered sheet of neurons that are extensively interconnected and have a highly regular geometric organization. The cerebellar cortex receives information from most parts of the body and from many other regions of the brain. The cerebellum integrates this information and sends signals back to the rest of the brain that enable accurate and well coordinated movements.

Although unsteady gait may result from problems in different parts of the nervous system or of the body, abnormal walking due to cerebellar dysfunction has distinct features that are usually recognizable. Persons with an ataxic gait due to cerebellar dysfunction keep their legs further apart than normal, referred to clinically as a ‘broadened base’. They often stagger and resemble persons who have ingested excessive alcohol. The resemblance of ataxia to inebriation is not a coincidence as alcohol is known to affect the main nerve cells in the cerebellum. Although brief alcohol-induced staggering is usually reversible, repeated exposure to high doses of alcohol may cause degeneration of neurons in the cerebellum and result in persistent ataxia. Purkinje neurons are unusually susceptible to different forms of injury, including other toxins, prolonged seizures, and lack of oxygen. Cerebellar ataxia differs from gait problems due to abnormalities in other parts of the nervous system, such as the abnormal gait seen in Parkinson’s disease, normal pressure hydrocephalus, or different forms of spasticity in the legs. Cerebellar ataxia is also distinguishable from abnormal walking due to pain and/or muscle or orthopedic abnormalities in the hips, legs, or feet.

Here's the link to their whole site:
http://www.hopkinsmedicine.org/neurolog ... as/ataxia/

Any of the major hospitals tend to have great websites with a ton of info. Hopkins, Dartmouth & Mayo are 3 that I use a lot when I'm researching something. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Jan 21, 2011 4:35 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Help! Hygiene and toliet tissue
Here is something else that can't be flushed: male guard pads. We were dressed and on our way to help friends celebrate their 50th anniversary when Coy demonstrated that. Our son was home, standing by in case Coy couldn't make it and I had to go by myself. (I was determined to go and in those cases I need a backup plan.) I said, "The good news, Son, is that you don't need to watch your father this afternoon. He is going with me. The bad news is that you have plumbing duty. If you can't fix it yourself, here is a signed check and a phone number of the plumbing service we use." We had a good time. Coy got to sit in the shade and interact with the friends who knew him well enough to come over and visit with him. I got to mingle and eat goodies. When we got home and discovered that flush had been a $360 mistake, I just shrugged and thanked our son for handling it.

Before Lewy took up residence with us I would have freaked out and this would have ruined my day, if not my whole weekend. Isn't it amazing how caring for a LO with dementia changes our sense of priorities? A flooded bathroom and a plumbing bill? Ho hum. What do you want for dinner, dear? :lol:

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Jan 21, 2011 4:41 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Help! Hygiene and toliet tissue
You're so right, Jeanne! Everything is relative. Takes a lot to intimidate us, now! :P

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Jan 21, 2011 4:50 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Help! Hygiene and toliet tissue
Oh ye who have septic tanks--baby wipes are the worst! Even if it doesn't clog the toilet, it can/will plaster everything along the way, especially the filter in the newer systems. I don't put anything down except TP, even if it says flushable. They now have baby wipes that are "flushable," but I don't buy it.

This toilet stuff, especially at night, is the pits, and we're not even really to the bad place yet. I'm beginning to hate the human body and wondering if the bedroom and bath will ever be perceived as a pleasant place again.


Fri Jan 21, 2011 5:41 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Help! Hygiene and toliet tissue
Lynn,
I'm wondering if you meant the word "apraxia" rather than "ataxia"...?
Robin


Sat Jan 22, 2011 2:00 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Help! Hygiene and toliet tissue
I'm finding that Frank is becoming more and more resistant at the same time he doesn't understand or is unable to process. I'm sure it's the same issue. Last night he had messed a few hours after he was in bed. I got him up and was trying to lead him into the bathroom by backing up while I was holding his hands. He started to resist and pulling back, we had a depends full of you know what so I kept talking and trying to keep him moving. I finally got him into the bathroom, depends off and he starts to pee into the tub, except he was two feet away, now I have brown pee all over the floor and again he resisted when I tried to get him to step into the tub. After several minutes he got in and decided to clean himself, grabbing at the towels and walls, had rails, it was poop city. If not necessary or important, when he resists I just walk away and try later but I could not walk away from this poop covered guy.

After reading that B has lost John, I feel guilty, but I wish it were me making that post. Sorry, but I think everyone understands.

Well, enough whinnying, need to continue with laundry.
Have a good day!

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Jan 22, 2011 9:13 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Help! Hygiene and toliet tissue
I don't understand either one.... but this was an answer on the web:

"Ataxia is a neurological symptom characterized by imbalance, wide-based gait, difficulty with positioning in space, truncal imbalance. It is generally related to brain stem or cerebellum.

Apraxia is a neurological symptom that has many sub-types. Generally it is related to parietal and or frontal lobe dysfunction and the ability to execute learned functions... examples include apraxia of gait and an inability to turn with fluid movement.

More than this you will need to delve into the textbooks. You will find entire texts on both subjects."

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Jan 22, 2011 10:23 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Help! Hygiene and toliet tissue
LTCVT wrote:
Persons with an ataxic gait due to cerebellar dysfunction keep their legs further apart than normal, referred to clinically as a ‘broadened base’. They often stagger and resemble persons who have ingested excessive alcohol. Lynn
After looking at this a second time, I'm prompted to say that Dale does not have Ataxic gait. He does not keep his legs 'further apart' and he does not stagger... once he starts walking.

On the other hand, he does have an inability to 'execute learned functions' as is typical of Apraxia. He lacks the 'fluid movement' as well.


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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Jan 22, 2011 11:00 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Help! Hygiene and toliet tissue
Gerry, we've used the large quilted bed pads and of course he wears Depends so if there's an accident in bed it's a lot easier to change and clean him in the bed than to risk spreading it around. Those new Depends adjustable pull-ups are great. You can easily split the sides to remove the old one and then split the sides of the new one to put on like a diaper instead of a pull-up. They have sticky-tabs so they work both ways. Isn't it just the worst when they try to clean themselves up? And it's so sad because they're only doing what they think they should. :cry:

Oddly, they don't use the quilted pads in the SNF so I brought ours from home.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jan 22, 2011 11:03 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Help! Hygiene and toliet tissue
Gerry, We went through this same scenario plus a couple of things...like he tried taking off his depends in the bedroom. Got poop all over the comforter that (Dont ever buy a brown comforter.) is, you guessed it, brown. So, after we had the welterweight championship fight trying to get him into the tub, with brown stuff clinging to his arms, his back, his legs and his feet as well as his butt, we showered him and he dried his clean body off, went into the bedroom and sat in the poop again.

Heavyweight championship fight ensued getting him back into the bathtub to clean up a second time. There was a flood in the bathroom from him fighting the shower wand. Rugs..towels...all my clothes...all the bedding. It was a MESS.

So, Have been there, done that and washed the tee-shirt.

Talking to his son later I said, if I had a chance to think instead of reacting to all that poop, I probably could have handled it better. I should have said (everyone says talk sweetly...like faced with poop all over you have the sense to react that way) "Oh, let's get you cleaned up and then I'll give you some ice cream." Yep, didn't happen that way. But I wish it had. I wouldn't have had so much to clean and wash and maybe the bathroom wouldn't have flooded.

There's a moral in here someplace.

Hugs to all on our walk with Lewy, Nan


Sat Jan 22, 2011 12:53 pm
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Joined: Mon Jun 21, 2010 2:24 pm
Posts: 32
Post Re: Help! Hygiene and toliet tissue
Welp! Here I go with my despicable story. My hubby recently has started having bathroom issues too.(And I am so thankful that I am not squeemish about these things!) After a recent hospital stay, we started using Depends. One night, he had diarrhea,and it overloaded the Depends,he woke up after the event had happened in the bed. He was delusional, thought he was fishing at a local lake, took off the Depends, squatted an DID IT on the floor on my side of the bed, and bless his heart he tried to clean it up. And it was all over him. The smell was what woke me up!! I changed the bed, got him in the shower (me too), got him changed and him back in bed. Got the floor cleaned up, (thank goodness we have brown carpet), so the stain isnt too bad. Also got all the small drops cleaned up, bathroom cleaned again and finally back to bed for me. Morning comes and I realize the full extent. He couldnt 'find' the bathroom, so he had wandered all over the house! I found poo in his closet, on some clothes hanging in there, on his chest of drawers where his underwear are, not to mention, door facings, walls, etc. Even found some on a pocket door that separates the hallway from the kitchen. Needless to say, chlorine bleach has become a good friend at our house. And anti-bacterial cleaners of all sorts, too. If our bathroom floor wasnt already white, it would be, from all the bleach used in there. This was one of those times I couldnt decide to laugh or cry. It was a lot of work, but he was so embarrased that we havent spoken of it since. And he is in denial about his Lewys, so what can I say?
Other people have no idea what we go through as care givers. I know mine is going to get worse, as it never gets better. And the folks who say "When life gives you lemons, make lemonaide", BOY, could we tell them what life gives us!! So, I guess the moral of my story is, make the most of today. We dont know what tomorrow will bring, but with Lewys, it certainly will be different!!
I am so thankful for all of you caring people here. Just to share the stories of our day to day lives, and know that there are others out there who are going through the same thing is a blessing. Keep up the good work. You will be rewarded for it. Love to all!!!


Sat Jan 22, 2011 1:50 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Help! Hygiene and toliet tissue
I read this thread simply in awe of the stamina of all of you caregivers who just do what needs to be done. I have never had to deal with any of the experiences you have been discussing. Kudos to all of you for hanging in there!

BUT I do have dogs, and from dealing with their various accidents, I thought I could suggest a clean-up product that could help you. Even if the waste comes out of a human, it is not much different from what comes out of a pet. Believe me, over the past 25 years of raising and showing dogs, I have tried them all.

I hope it is okay to mention the name of the product. THE very best, hands down, in getting rid of the odors and stains from vomit, urine or stool is called "Get Serious." (Weird name, I know.) Any on-line search will show you where to buy it. And be sure to read and follow the directions carefully--it makes a big difference to use it properly! This must sound like a commercial but I am just offering the only practical advice I have on this subject. Hope it is helpful!

Julianne


Sat Jan 22, 2011 3:45 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Help! Hygiene and toliet tissue
Julianne, thank you. I'll look for it. There are a couple of dog vomit stains on the carpet that I've tried everything on [I think it's some kind of yellow coloring they put in the dog food] and gotten them mostly, but not completely, out. I'll try it!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jan 22, 2011 4:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3377
Location: Vermont
Post Re: Help! Hygiene and toliet tissue
Ataxia was what the nurses and doctors said my dad had, in regard to his inability to make movements requiring strength and coordination of his trunk.
He did have issues with his limbs and walking, etc. but the trunk movement and coordination was getting pretty bad even before The Big Decline where he became almost paralyzed, incoherent and hallucinating overnight.
You CGs who are dealing with all the messes and cleanup are saints in my book! I think I'd have to be cleaning up after myself if I ever had to do that for anyone other than my kids when they were babies!
Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Jan 22, 2011 4:32 pm
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