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I am ashamed to admit that I just lost it on my husband (Early Age Alz) for having "deliberately" peed all over the bathroom floor tonight. Actually lowered his Depends and let loose! I do SOOOO much for him, but he can actually do things himself. Toileting is something he has been mostly good at which is why my B_TCHY self convinced my normal self that he did it on purpose because he was mad at me!


Has anyone dealt with this guilt/anger/devil-on-my-other-shoulder feeling? I know he will forget the incident -- how do I?

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97yroldmom's advise you to take time for self care is a good first step, but do you have any respite time where you can get completely away from caregiving? Nobody can continue to keep their cool if thy are "on" 24/7, especially for years at a time. Try to get out and away at least once a week, and if possible plan for yearly overnight vacations. Don't be afraid to reach out to friends, family, your religious community or paid caregivers, as caregivers we must remember to "put on our own oxygen mask first" in order to have the strength needed for the long haul.
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By the way, I said drink something soothing & I don't mean alcohol. Drinking in care taking would be a big no no. Put the whiskey away & don't tempt yourself. HA!! HA!! Get some tea, juice, oh heck a milk shake. (Don't we wish!!) Broth, something that feels good, but forget the jug of beer. LOL After all, you don't want to be seeing double. LOL Double the work is not double the pleasure.
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Suetillman, I agree that it was not fair to the dog. The dog died soon after this incident and no one ever saw her hit the dog at any other time. My mom had constant supervision, so I'm pretty sure the dog was fine other than this one time. I would have taken the dog to my house, but the dog was really important to my mom and also the dog was very attached to my mom. The home care ladies and I mostly took care of the dog, feeding, walking, and taking to the vet. Thanks for your concern.
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There is no way that your husband, with this dreaded disease, did this on purpose. He couldn't help it. YOU are to forget and move on. I know - harsh words, but really wise words because if you hold onto the incident(s), you'll not be able to rally. Prayers to you ...
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You are not the first..you are not the last...and anyone that says they have never "lost it" when dealing with a person with dementia, or any caregiving for that matter is out right lying!
Did you ever lose it before he was diagnosed? What did you do then...say you are sorry that you lost your temper. then he probably said..I'm sorry and you gave each other a hug, a kiss and went on with life...
Do the same thing now. Say you are sorry, give him a hug and a kiss. If he is anything like my Husband at this stage he would not hug back but I would on occasion get a kiss..and he loved to hold hands. So that is what I would do when I lost it.
The fact that he could not say he was sorry, the fact that he did not understand why I was upset probably hurt me more than me loosing it. And the fact that I probably frightened him made me even more sad.

Losing it is part of life, part of marriage if you did not love him you would not be upset with yourself.
Forgive yourself
As far as I know the last Perfect person was nailed to a cross ................
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anonymous954216 Sep 2019
Thank you and you are right. I did scare him but, get this, he came to "help" and handed me a tissue! I do love ALL of him and miss the part that still peeks out from behind the veil!
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It is okay. My husband lost it on my mom once when she hit the poor crippled dog for peeing on the floor because of not making it out the door. He yelled. She yelled back. He yelled back. She told him to get out of her house. He said no. I stood in shock and then tried to help the dog. All three, my mom, my husband, and the dog were all shaking. My mom called later and asked if she had had a fight with my husband. I said yes. She couldn't remember what it was about, just the yelling. I told her and she said she was so sorry. He said he was sorry too. And then we all forgot about it because there was just too much to do to worry over this one incident. In the totality of all that goes on with Alzheimers, losing it once in a while can be forgiven. The dog forgave as well.
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Suetillman Sep 2019
Maybe the dog needs to be taken to your house if she is hitting it. I feel sorry for the dog. No one should have a dog if they are going to hit it even if they do it because of mental problems.
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My husband and I, together take care of my 90 year old, end stage Alzheimer's mom. Being able to take a break for a few minutes or longer a couple of times a day is what keeps our sanity. I don't know that I'd be able to do this without the support of another caregiver to step in and let me walk away for a little while. A nap works wonders. 30 minutes of exercise each day is a life saver. I'm sometimes up a few times a night with her, so a full nights sleep rarely happens. We've had issues with incontinence and are having them more lately. I usually don't take it personal, but it's still frustrating and so hard to clean up messes over and over. For me, knowing that she can't help it, helps.

We resisted using any chemical help until just recently. We used to be able to successfully re-direct her if she was anxious. We could keep her busy with puzzles, card games, music, and stories. When she couldn't sleep, we could deal with that since it was only occasional. Now, she isn't able to re-focus very well and there isn't any reasoning with her because she doesn't understand most words anymore. But, she's still anxious and has trouble staying asleep. We will give her a Xanax (smallest dose) on sponge bath days, pedicure days, shampoo days, or if she wakes up anxious. She hasn't been able to cope in a shower for over a year but she'd let me sponge bathe her. A couple months ago, she'd become very agitated with that, so we tried a Xanax and it helped tremendously. It doesn't put her to sleep nor make her more lethargic, but rather keeps her calmer and I actually think it gives her a little more clarity on occasion. Sometimes she dozes in her comfy chair but she does that without Xanax too.

Trazadone at bedtime has made a big difference as well. When her sporadic sleep became problematic and more of a nightly occurrence, we started her on a low dose. Now, many (but not all) nights she sleeps better but is still able to wake up for help to the bathroom. Timing is everything, and if it works out that she goes right before bed, we're in much better shape through the night. Sometimes she can't figure out how to pee, and all bets are off, on those nights.

One of the downsides to using drugs such as these is that she becomes more of a fall risk. However, we assist her with walking and she's rarely out of our site so we're able to keep a very good handle on that. Drugs of this nature might not work if your LO is expected to walk unsupervised.

It was a very hard decision for me to be ok with using any drugs like these. I felt guilt, and that I was failing as her caregiver/daughter. I feared she'd be a zombie in a chair if I used anything. Well, this disease sometimes makes her unable to do anything but sit, and sometimes it makes her a hot mess of anxiety and discomfort. Low doses of these drugs helps. It isn't a perfect solution and some days are better than others. They are one tool of many in the toolbox. And, looking at it another way, it is actually helping us do better for her. We get a little better rest at night and she's a little less anxious and better rested during the day as well.

Everyone's journey with this disease is different, and our approaches to caregiving will have their own unique qualities that work for all involved. Forgive yourself for feeling negative. Don't be afraid to try something different if you're unhappy with a current strategy. We are all doing the best we can. Bless you on your journey.
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He will also forget you were annoyed - if only it were that simple for us! You’re a lovely lady dealing with a lot -

Like you i tried to bear in mind that it was the illness and succeeded most of the time - good ironic sense of humour helped!

One thing my father did was expose himself - so I had to forward folk that he might. They were all very good about it. Every time it happened I would just calmly say “you’ve shown us before - put it away’.

it’s frustrating having to clean up - I can get down to floor level but have difficulty getting back up! My father used to pull his pants to one side and pee in the bed every night - as there were only 3 sets of sheets that fitted that special bed I was washing at 2am each night so that there was one on the bed, one drying and one in the wash.

Have a “pummel pillow” to thump and express your ire at - it’s great therapy!

There’s no reason for guilt - you are doing wonders - he’s already forgotten so just put your cross moment down to being a normal human being and move on - caring is stressful enough without feeling guilt over little issues.

i wish you all the very best
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anonymous954216 Sep 2019
A pummel pillow sounds like fun!!!! My luck would have it that i would sprain something, but the thought was great. Thanks. Good thoughts for you and yours.
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Um, we understand. My mother is a witch, and just turned 97 and in the past year, consider it burnout or whatever, but I have called her that to her face. Not to worry---she only wears her hearing aids 50% or less of the time. If your spouse as you say, you know will forget it, then don't worry about it. With my mother I swear she knows damn well in the moment exactly what she is doing. She forgets from minute to minute, but I witnessed her the other day and she read a birthday card that was from me, my dad and my sister which she'd been given earlier in the day with a gift...and she immediately ripped it into pieces. She knew and no one will ever convince me she didn't. She was angry and pissy because dad and I had locked the doors so she couldn't go out to the garage, play with the garage door buttons or throw trash into the wrong bin. I felt awful as you do in the beginning...but as time passes you will feel less awful. Just remember...they forget. And we try to do better and be more understanding the next time. IF falling isn't a risk, I'd put some depend pads on the floor...maybe make one bathroom his so you can have one free...
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anonymous954216 Sep 2019
Thank you for your floor suggestion but yeah, tripping -- size 13 feet no less! So, i have resorted to turning large puppy training pads over and cleaning up the various liquid spills with them. Works wonders without contact.
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I am in a similar situation ( I can't believe how many of these "same" situations I have been involved in. OMG My husband does this in the middle of the night. He rips off the Depends because he says they are uncomfortable and urinates all over the bed. He says he doesn't remember doing it. He just reacts to this. I really do believe him (he has a mild dementia) I do get angry. I have to change him and all the beddings. Our Laundry room is across the courtyard with many doors and steps. This occurs quite often. I too, get angry and start disbelieving that he is not doing it on purpose !  I use vulgar language and then I am ashamed of myself.He also has loose bowel movements at times and it happens many times when we are out. Oh, what a mess !   This is a nightmare and I am doing all I can to keep it all together and you have to do the same. Yes, I find that prayer helps. What good does it do to get so angry, you hate yourself. Just hang in there dear, and do the best you can.  He may not be doing this on purpose and if he is, just be kind and tell him "it's all right"  and you'll see he won't do it again .
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ML4444 Sep 2019
Oh lawdy....please buy him a separate bed and use liners etc (if he is in same bed as you). Maybe there is something more comfortable than Depends on the market. The lovely people on this forum usually give good advice so let’s see what they say! Good luck~
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First of all, care taking is one of the toughest things you can do. You get tired. Are you taking time to take care of yourself. If I were you, look up in the search bar to see about his tiring behavior. There is so much hateful behavior in this world & so many are not ill. If you feel like you just can't take it anymore, be careful you don't burn out, Make sure you take the time to eat healthy & stay hydrated. Get enough sleep. Take time for you & maybe you could write a journal & get out all your frustrations. Walk away for five minutes. Get a breath of fresh air & drink something soothing. Take naps, you need to get refreshed or you will be no good to anybody, not even yourself. You are all human beings & what you are doing is very nice, so DON'T be so hard on yourself!!
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gdaughter Sep 2019
Especially DRINK SOMETHING SOOTHING! LOL. I wish I drank!
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Tetertottering, you are so not alone. I just with through something similar with my mother and lost my it with her. I felt very ashamed and I still can't figure out if what she does is to get back at me for something I did or didn't do or is it just the disease! She has always been this way just not to this extent...but can't help but to ask "what kind of person gets mad at a 76 yr old woman with this horrble disease?"
I really have nother to offer except that "I get it" and your not alone! After all we are just human.

Hugs!!!
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gdaughter Sep 2019
Yeah. Sometimes I get so angry and frustrated and it is not just mom with dementia but stubborn dad who is deaf and demanding...and I will take my little love outside (my pup) and curse into the wind and share unpleasant wishes and pray none of our surrounding neighbors can hear me. I feel myself edging ever closer sometimes to the breaking point. It's the little stuff. The taking my newspaper she thinks is hers, reading it, and in spite f dad telling her leave it here...she rips it into pieces and throws it out. It's destroying a windowbox full of plantings I made with handpicked vine etc. Or "trimming" a plant that is growing. Spitting grape skins in the kitchen sink. Putting the heat on in the summer or setting the a/c for 65 LOL. Some days it is just too much.
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I've worked in aged care residential memory program wards and have actually witnessed residents find their bathrooms (with some guidance) but somehow, not understanding the toilet is where pee goes. Same as your husband, this guy just dropped his pants and weed on the floor. He knew he needed to go to the bathroom, but didn't know to to aim for the toilet.
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anonymous954216 Sep 2019
As women, we always envied their ability to "do it anywhere". Hmmmmmm. Thanks for your input.
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TG they have short-term memories. And they also are like children. Getting mad at you for the smallest thing and I do think they will do something to get back at you. But, its all part of the Dementia.

I woke up one morning to find my Mom had had explosive diarrhea. The toilet looked like it had thrown up. She had walked back to her chair and sat but trailed it out. TG it was a cheap area rug. We just thru it out. Had to clean up what I could to get her in the b/r for a shower. It took me 3 hrs with pinesol and bleach to clean it up. I was in tears. I hate anything to do with bodily functions. I swore if it happened again, it would be time for a home. Another time I had a small table behind her bathroom door. I went down to find she had done a #2 on it.

Its such a shame that our LOs have to go thru this indignity. They would be so embarrassed and ashamed if they knew what they were doing. It takes a special person to have the patience to get thru this. I am not one of them. And I pray that Mom never really heard me get mad at her.
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gdaughter Sep 2019
EXACTLY! Like children and capable of being spiteful in spite of dementia! It's like the self-censor mechanism is broken. My hope is that I can continue (for now with Dad's help) to have mom at home...but a situation like the above would be dire as mom is one of those who has refused to bathe/shower for over 2 years now ( the time goes so quickly) fortunately there is no extreme odor...but I would never be able to get her in the shower and neither can dad. Nor did any of the private hire aides we tried, who didn't try very hard.
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Oh yes! My dear husband had me up 7 times last night and 10 times the night before. (Roll over x3, drink, roll over x4, pee, roll over...) I was so shocked (and defeated from lack of sleep) that he would do this to me. But then I realized that calling him out for it wasn’t going to help. If I’m going to take my nights back, I had to make the changes.

So, last night, I went to bed right after him rather than 3 hours later. Even though he still called me 7 times, I felt a lot better in the morning. I also called the doctor for a sleeping pill for him. Let’s hope ambient works! If it doesn’t, I’ll have to hire an aide a few nights a week for my own well-being. For me it’s about adjusting to make it work. Can’t change him!
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RNHere Sep 2019
Ambien doesn’t work for everyone. If it doesn’t work for him try a different one.
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Do you suppose he did this on purpose? Did you even suppose he would do such a thing on purpose?
You are missing something in what this disease is if you think that he would do this to you on purpose. And hey, I know you DON'T miss that; I suspect you don't miss a thing.
And I can imagine you DID lose it, because I would have entered the room and said "J. C., honey, what the H--- did you just DO!!!!" But ultimately I would calm and know HE didn't do it. The condition did it.
Of course there is a devil on the shoulder just waiting to loose itself. That's OK. There is NO ONE more forgiving than someone already in this condition.
Hon, when I had cancer and was getting chemo all those many years ago I knew what my new husband was going through ( maimed sick wife who could just die on him, and hey, this is what he chose for a new wife?) . And when I complained to him once about how I felt so bad complaining at all because I didn't vomit, all my hair didn't fall out, but my mouth tasted like copper pennies and I couldn't eat a thing and I was afraid. ...I began to cry. He said to me
"Why can't you just say 'This is so hard. This is really so hard'?"

So I will ask you his wonderful question:
Why can't you just say: This is SO HARD. This is just SO HARD".
You already know he forgot it. Good on you. One step more and you can forget it yourself. Just say it out loud.
THIS IS SO HARD! And now forget it.
(Though I never forgot his beautiful words to me that day; I never will.31 years ago. It might have been yesterday.).
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anonymous954216 Sep 2019
I am thanking you thru my tears. I am a newbie at self-forgivness but a pro at forgiving others. Your words (and his) will be in my head. Thanks!
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I still have a hard time differentiating what my 92 y/o mother with dementia is doing 'for spite' and what she's doing because of her dementia. My rational mind tells me one thing while my emotional heart tells me another thing entirely.

You are not alone with this struggle, dear woman. Forgive yourself and move on. I'd like to say this will be the last time you'll lose it with DH, but it won't be. You're doing your best now, and you'll continue doing your best, even when you have your occasional moments of frustration and aggravation.

Allow yourself to be human. You deserve to be.
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anonymous954216 Sep 2019
Thank you for helping find my "snap out of it" button. I was wallowing a bit. You reminded me this path has been tread by many more before me. Good luck to you and yours.
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Forgive yourself right now. You are only human. Recognize that you might need a little help.
Even the smallest amount of help will make things easier for you.
Walks. Yoga. Stretching. Meditating. Good sleep. Healthy diet.
All of that helps you which will also help him.
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anonymous954216 Sep 2019
One of my greater struggles is "self". I am really having a tough time learning the difference between selfish and NEEDING to do something to help self. Those suggestions are good ones. I will endeavor to make them part of my life. Thanks.
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