Sorry for losing it. Here is the rest of the story

RobertsBrown

This is not a pleasant post, and contains no useful information.

I had a mini-rant a day ago, and I didn't give any info on the 'why' of it.

Here goes.

I have sanitation issues.  It’s the way I was raised.  We used to say ‘girls don’t poop’, and not even in jest.  In our house there was no clue that women did anything in the bathroom but wash their hands.

We all locked the door when we had business to attend to.

This ended somewhere in the last year or two..it’s all the same day and I can’t remember when the change happened, but my wife has incontinence of both types. At some point things shifted, and when she walks into a room I look immediately at her crotch to see if she is wet.  That’s a hell of a thing, but has now become completely automatic. If she is out of sight for 5 minutes I get worried, and when she walks in to a room with her pants on backwards, or inside-out, I know I have a cleanup on my hands.  This has also become routine, and it’s handled swiftly and with compassion.  Generally a large part of this is me reassuring her that she’s OK, and we will get her ‘fixed up’.

Yesterday was day one of a new thing that I just about couldn’t handle.  She showed up with her clothes wrong and looking distressed.  She needed her hands washed first, before we went on to further cleaning, and then I got her out of her clothes and into a shower.  Cleaned up, fresh laundry, ready for prime-time, and I went to clean up the bathroom.

No mess to be found.  I did find her soiled undergarments, but no mess.  I had to follow my nose to find the very large poop placed in a basket on some magazines in the den.

So now this person I live with is actively hiding poop in my house.  What fresh hell is this?

And for me, I can’t admit to anyone that this is happening.  I can in no way imagine a universe in which I tell this to anyone we know.  It’s just too much. It’s too disrespectful to the memory and reputation of my love. 

I just can’t see any connection between the woman I was pretty sure was out of my league when we met, and this person who’s care is now completely in my hands. How did I become the caretaker of the primate house?  What’s next?  How completely, ridiculously, insanely horrible does this get?

We are farm people.  The rules for animals is that when they lose their ability to keep the house free of messes, they become ‘outside’ animals.  We make  a nice accommodation for them on the porch, and that’s where they spend their final days, months, or years in some cases.

My wife always said the defining line was the loss of dignity.

Well, that’s pretty much gone.

Lynne D

RobertsBrown, I have no idea where you go from here, but you have my sympathy. I look forward to learning what others have to say. A fresh hell indeed.

Faith,Hope,Love

My prayers are with you!!  I'm glad you vented, it's very important to get it out of you.  It sounds like you need a break from the craziness we all live with.  Could you hire someone who's trained in handling persons with dementia to come in a few hours to give you a break from all of this?  

I visited my doctor yesterday and explained all the craziness going on in my own home.  He reminded me that "Caregivers Fatigue" is real and that we all need at minimum a few hours each week to get away from our LOs.  He said it's the only way to protect our own health.  Just something you might consider.

toolbeltexpert

Robert I also have no advice. And going thru each new behavior brings it workarounds, we do the care best we can. I was asked by a cna on Thursday if I could help them get my wife to shower. It is a modesty issue.having someone else in the room was more than she could stand. I couldn't believe how much my wife has lost as I shampooed her hair. She didn't know what to do with the soap. I got a little wet but I did my best, she can tolerate me helping. Robert others here have gone thru this fresh hell and maybe they have workarounds that have been successful.

My prayers are for you and everyone each day and moment by moment.

Stewart

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Joydean

Robert, I can now understand what others have gone through. I’ve read about bathroom explosions and thought I hope this never happens, but I tried to be prepared. Had the gloves, bucket,roll of paper towels, disinfectant,mask, and all the stuff. The other day my dh comes walking out of bathroom holding his pants up and said you have to come see what happen. I didn’t want to see. I told him let’s get you in the shower and cleaned up first. He had tissue paper hanging out his pants with poop on him. I got him cleaned with fresh clothes on. Then went to his bathroom room and prayed I didn’t lose it. I have a very weak stomach. All I could think was how did this happen. It was on the walls, everywhere. I just started cleaning and got it done  Dignity? When Alzheimer’s walked in the door, dignity walked out! 

We just do what we have to do. My dh just sat on the side of his bed while I cleaned and said I’m sorry, I don’t know what’s happening to me. He too was always a very private person. It’s not their fault. Alzheimer’s is a private hell! It takes and it takes, and our dignity is only one of the things it takes.  Best of luck to you. 

Ed1937

Roberts, I'm sorry it's so hard. For everyone. When this first happened to us, I tried to make myself remember that her brain was constantly failing. Then I tried to understand just how she felt about it. I've always believed that it was harder on her than it was on me. When their dignity goes, that must be very hard for them to deal with. This disease sucks!

Beachfan

RobertsBrown,

This is probably advice no one will welcome, but here goes.  When I became aware that DH was having “bathroom issues” early in his diagnosis -2010, I pretty much never left him unsupervised.  I started by lurking outside the bathroom door, then inserting myself into the bathroom to supervise, physically assist, and finally managing every visit start to finish. (I never questioned dignity; I just barged in and took over.  Luckily, he was compliant.)  I learned to anticipate his needs, sleep with one eye open, and although there were a few accidents over the years, they were minor and easily managed.  It wasn’t until I seriously considered placement last fall that I realized DH had never used a toilet independently for at least 10 years.  I considered him “continent” because I didn’t allow otherwise.  Macy’s, Taco Bell, the Officer’s Club at the Naval Academy- - there was no place we went that I didn’t drag him, discreetly, into the ladies room.  Looking back, it was exhausting, but I didn’t have an alternative. It was always me, just me caring for him.

DH has been in a MCF since November and I have been liberated.  When I say that I feel like I’m on vacation,  some people look at me funny, but those who know, know.  This is not really advice, just what I did.  It’s probably not a sustainable approach for most people, but it worked for me. I wish you luck going forward; your posting indicates that you are a loving and respectful partner to your DW.

dayn2nite2

Incontinence can be a dealbreaker for keeping a LO at home.  Then you look for placement.

MaryG123

The back porch for us is a care/nursing facility RobertsBrown.  There’s nothing wrong with that if it’s time.  I’m so sorry that you’ve lost your dear one to dementia.

ImMaggieMae

Robert, this is an awful thing to have to deal with. Is this woman you were  pretty sure was out of your league when the two of you met because you probably figured you weren’t good enough for her, now out of your league through no fault of her own because she has a terminal disease that she can’t always control?  You’ve always handled her incontinence with compassion in the past and I’m guessing that you will start watching her a little more closely and find a way to deal with this new behavior. It might be a one time thing. As bad as it makes you feel, it probably makes her feel pretty bad too, or at least confused. 

You’re right, cleaning up messes becomes automatic after a while. I guess I have an advantage because I’m a woman and I know girls do poop. And sometimes things change for the better, at least for a while. It’s been many months since my DH had any bowel incontinence and has has much less urinary incontinence after an increase in meds. 

IMHO, dignity has a lot more to do with compassion than with someone who is doing the best that they can.

KathyF1

Robert, I’m not there yet with my DH, but it will probably be inevitable from what I’ve read. So I can’t relate as much to what yours going through, but I just wanted to say I can tell you adore your wife and you are to be commended for that. She is so lucky to have you.

Ed1937

"IMHO, dignity has a lot more to do with compassion than with someone who is doing the best that they can."

I fully agree. Showing compassion can make most situations much more bearable for the PWD, and that makes your job easier. Thanks for pointing that out. It's an important aspect of caregiving.

David J

Ah, yes: the Hide the Poop game. Unfortunately, I played that game for a while. Under the bed, in the garage, in the shower, wastebasket and just in the corner. The only way to win is to watch like a hawk and get her in the bathroom before she goes. It takes a lot of attention which is very tiring. 

I look back at that time with a little more humor, and wish I had handled my emotions better.