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baskethill1 Posted June 2018

This is going to sound petty, but anyone else get called off the toilet all the time?

It's bad when sometimes my only refuge is to go to the bathroom and re-gather myself. Mom is still mobile and I'll say, "I'm going to the bathroom." In less then 5 minutes shes asking where I am. I know she's getting very dependent. I try to understand. I just want to go there for 5-15 minutes. Anyone else have this? Same with the being within sight. If I go to kitchen or my room to get something... Where are you? Anyone here? I'm ALWAYS there ..grr
Sorry, just b*tching and moaning.

Mimi-of-2 Jun 2018
I guess we need to laugh sometimes ( if I start crying i may not stop 😀).. the day I realized how little my needs mattered ---- I went into the guest bath off the living room , closed the door to do what needs doing in there when mom came to the door with her walker to knock and inform me
" I need to go to the bathroom !!!"

She didn't head to her bathroom ( with all the ada equipment but back to her chair waiting for me to stop what I'm doing , get her and head off together to her bathroom... all for a gas !!!!

I don't know if I would make it through the day ( and night) if it wasn't for this site and all the suggestions , stories that hit home and sense of humor when needed most !!!

johnk6749 Jun 2018
For me it's about 5 seconds before she is calling for 'Marian.' I can't yell to her because she can't hear. She just keeps calling for Marian(her sister who died in 1972). That's who she thinks I am.

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KDcare Jun 2018
Yes, I've been there too. Mom would also ask to 'come in' with me, and knock on bathroom door the whole time I was there. I called her my 5 foot 6 inch 'Shadow' much like a 2-year old then. But, now, in her last stage of Alzheimer's, I wish she could bother me while I'm in the bathroom. I wish we could still have those weird conversations again and those silly arguments, even! I miss her and she's not even gone yet! I'm now trying to find the snatches of good in each stage and treasure those - letting the bad fall away as I know she cannot help it.

anonymous522911 Jun 2018
Yes! I live with my elderly Mom and Dad. Mom has the more severe dementia and falls into very deep sleeps...in her living room chair. It's very hard to wake her, and Dad, who has extreme separation anxiety almost panics when I leave the room. No sooner than I've gone upstairs to the bathroom, he's calling, even following me up wanting to know where I went. I understand his dependence (he is both visually and hearing impaired) but the bathroom has almost become my sanctuary. I've been losing my cool an awful lot recently. I caregiver 12+ hours each day, and sometimes the final straw is being questioned, "where are you going?" and "How long will you be?"

Jasmina Jun 2018
Another thing is to skim articals online, about toddlers and separation anxiety online. Same principles work with the loved one. Good luck.

Jasmina Jun 2018
Ok ladies, I assume most of the poster are. Time to think of ways to get your life back!
Time to find a college kid, retired person, a caregiver from an agency, or get that brother, sister, fam member who won't step up and help. Now it's their turn.
You are now going to put yourself back on the list of allowing yourself 'personal time'. Stop feeling guilt, or let family members make you feel guilty. They are good at that, bc they don't get stuck with the job. Teehee.
Go take a walk at a park, a bath, sit and relax, make a phone call, go to a movie, lunch. Whatever. Do what you have to do to get your life, your health, and your sanity back. Martyrs usually get killed off in the end. Stop being a martyr. It's not bad to ask for help.
I'm sure you didn't have children just so decades later you could suck the life completly out of them. Don't let it happen to you. Now go and be proactive. Make that phone call!!!!

johnps30 Jun 2018
So grateful to be reading these responses. This is new to me, but I thought I would share a story.

I was watching Tiger Woods play recently and my 80 yo brother asked if I played. I told him I did not. Another minute goes by he asks again, no I reply a 2nd, 3rd and 4th time. I say "Tom you just asked me that 4 times" - he says I might ask you a 5th time too. I didn't know what it meant. So the next time he asks, I tell him "yes" - "are you any good?" he asks, I tell him "No" to which he replies "at least your honest"!

He never asked again; I can't tell whether change in answer signaled that I wasn't going to play, or that he was no longer interested.

He can no longer be left alone. When he was discharged it was with a dementia diagnosis. I am just trying to figure out all the options - I have been very comforted by all your questions and stories - it feels like it might be a little more manageable.

John

CaringRN Jun 2018
It's not petty @ all. In the final 18 months of Mom's life she would frequently do that. The big, serious problem was she would say to the uninvolved, non-caregiving family members that I or the other caregiver's had left her alone in the house. The family member's were in denial of Mom's dementia & believed everything she said. If we were not constantly in her view, she would say we had "abandoned her".

Mapotter Jun 2018
Baskethill, I know what you mean. I can't leave the room without Mom trying to get out of her chair -- and sometimes succeeding -- to find out where I am (or anyone else is). The problem is that she is a fall risk. I tell her where I am going and tell her to stay in her chair, but that rarely happens. Mom has no concept of time. Five minutes is like 2 hours to her.

I have resorted to tying an exercise band through the arms of her chair. She spends the time I am gone trying to untie it. (One time I didn't tie it tight enough though...).

Is it that they don't like being left alone? Do they just want to know what everyone is doing? Or is it that they are concerned about us??

MaryKathleen Jun 2018
Almiller, you need to find a way to stop sleeping with your mother and sleep with your husband. Think of having a toddler, they want their own way with no thought about your needs. Marriages have broken up because of things like this. If you are of a religious bent remember Jesus's words about a man leaving his father and mother and cleaving to his wife, and the two would become one. The same thing applies to a woman.

You might consider having her go to someplace for respite care for a couple of days and you have some "quality" time with your husband. Sure she will scream and holler, but you need the time for your husband and yourself. At an assisted living or nursing home if that is truly what she needs, there will be people there to take care of her. You are starting a precedent that could destroy your marriage. If you can't do it I recommend getting some therapy so you have the strength to tell her NO.

I say this because my mother moving in a grannie apartment at our house helped end my 26 year marriage. I got therapy and finally was able to put my big girl panties on and actually, I left.

Isabella55 Jun 2018
Hi everyone, no one but NO ONE, knows what we go thru but us caregivers.Sometimes I think I'm the only one going thru this but deep down inside I know I'm not. I too want to hide jst so I can hav a little ME time, I cry cry at times, I gt frustrated, angry, upset all at once. Then there times I am happy, joyful, appreciative that I can watch my mom and that I hav her. I talk to GOD everyday, second, minute N ask for guidance/PATIENCE cause I can't do it myself. Just last night my mom had an episode at 1am, jst wld not go to sleep, I will spare you the details but I'm sure you all cld relate. She cries too, gets feisty, wanders, bathroom trips (unnecessary), loud loud talking in her sleep, I have to repeat myself cause she can't hear, but surprisingly to me she can hear when I step away, flush toilet, walking quietly, getting off her bed, mind you I do this as quietly as possible to go to my bedroom, and whatduknow, "Is that you,?" she says grrr.. Having said all this I'm glad I can vent here Thank you! for jst listening.

anonymous812346 Jun 2018
Yes, yes, yes. Every time I sit on the throne, hubby tries to leave the house. After so many years of kids, grandkids, and now this I feel like an uninterrupted bathroom break would be a vacation!

Isabelsdaughter Jun 2018
My Mom used to yell for me constantly, scream my name over and over un till I responded. In the middle of the night was the worst being woken up like that. Meds help, you should talk to her Dr.

ML4444 Jun 2018
OH, and she is in complete denial that there is something going on with her cognitive abilities. She repeats herself ad nauseum, tells the same stories over and over and over within minutes, asks the same questions over and over and over, can’t remember the date within 30 seconds of my telling her what day it is, and then got mad when I told her we need to go see a neurologist to see what is going on. She refused and didn’t speak to me for awhile. My brother and i are very concerned she has some beginning of dementia, but if she won’t go get checked, what do we do?

ML4444 Jun 2018
Oh boy, ALMiller and Butter3fly you sure nailed my problems with my mother.
She is trying to make me be at her beck and call 24 hours..just moved her into an independent retirement home (at her decision!!) and 24 hours later she wants to leave and move here because she doesn’t like being alone. Meanwhile, i have had her at my home for 3 weeks as she sold her last home..had to drive her everywhere, make decisions, cook lunch and dinner, AND take her to doctors to include audiologist because she is going deaf and was driving me crazy having to repeat everything and shout at her so she could hear. She decided she didn’t have a problem and took BACK her hearing aids. I told her I will no longer repeat anything, NO we could not have the TV blasting at sound level 66, and NO she cannot move back here. I will lose my mind, privacy and any life I might have. I just retired after 40 years and i won’t be a 24/7 caregiver, especially when she has resources. If that makes me selfish or mean, so be it. I am drawing and keeping the boundaries. We all have different situations, but this is the only thing that is working for me. I am so sad to read some of these stories, but many of your responses have been so helpful to me, and I thank you all.

Jasmina Jun 2018
No you are not selfish. When did a caretaker mean personal 24/7 attached at the hip servant?
You have a life an are entitled to it, your bed, your husb, and privacy. You shouldn't have to hide in the bathroom to de-stress. That should tell you this is way too much for your mental health.
So the mom has a fit. As long as she is fine, let her have a fit. She has become like a toddler. Would you let a toddler scream and rule You? No.
You must ask yourself, are you enabling this behavior? Probably not on purpose, but being there every second, or running immed when called is feeding into it.
Nursing home staff does not sit one on one in the clients rooms day and night. They wait to get meals, call bells answered, and with adls. Its life.
Give her something to do, and start weaning her from this behavior.
If mom is able to have a conversation about your dinner and time away, she can deal with being with someone else for awhile. Do not cancel eve plans.
If you have the monitor and can hear if she gets up to walk somewhere, let her yell. It will get worse weaning her off this behavior, but your sanity depends on it. I dont believe it'
 The dementia, bc then every or in nursing home would be yelling their heads off when the CNA leaves the room. They dont.
Put her in briefs for the night, while you get sleep in your own bed. Don't feel guilty. You are entitled to privacy and a life, and down time away.

W61ha13D Jun 2018
My parent intentionally listens and will call for me to just do it, all but admits to it too, lol. No dementia or anything like that just ornery. If he hears the toilet paper roll flipping in the bathroom, he starts yelling for something. If the floor pops when you walk across it, if a faucet is turned on, if the dogs walk across the floor, if I cough, he'll yell for something and then say "I was just wondering what you were doing". It was really bad the first couple of years, he's been with me for five years now. He has a monitor, and I moved my bedroom and bathroom to the top floor where he can't hear me, but I can still hear him at night after he's tucked in, so I can actually go to my room and walk across the floor, flush the toilet and flip that toilet paper on the roller, lol, and he can't hear me, bwwahahahah : ). Sometimes all it takes is the smallest things to make you happy. Anyone noticed how a parent seems to be hard of hearing, the constant huhhh??? And you have to repeat yourself several times, I feel like a parrot sometimes when I answer questions, yet he can hear me walk across the floor? The other thing I get are questions, lots of questions over and over, same questions. But really In the end it all is what it is, I know I'll probably be the same way some day, nothing lasts forever, I'll know I did the right thing by my dad, we have some great conversations, I've learned so much from him.

Janedoe4150 Jun 2018
I have literally developed stealth ninja moves because of this very thing lol I have sooo been here locks bathroom door and yells lemmealonnnnne lol

butter3fly Jun 2018
My mom is diabetic and hasn't really taken care of herself. She is going blind and very hard of hearing. Last year she fell and found out she had to have her big toe removed and was in the hospital 5 times with infections. So this year she has not been sick but as soon as a walk a room she calls me. and because of her hearing loss I'm repeating myself 4 or 5 times. very frustrating I feel like crying most of the time.

smeshque Jun 2018
All too familiar. The bathroom is my only private space. But, if I am in there too long, I am being searched for, and needed.

Countrymouse Jun 2018
Almiller, I am very sorry that your mother has broken her ankle. It must hurt her a lot, and I do not blame her for needing help and reassurance.

Go to dinner. Sleep with your husband. What's your mother going to do about it, chase you to the restaurant? Drag you out of bed?

You can just let her fume, you know. When she is raging unreasonably, it is okay just to let her be angry. You still love her and want her ankle to get better.

Oh - and if there's any to-do about it, for heaven's sake turn off the baby alarm. Check in on her when it suits you, instead.

Countrymouse Jun 2018
!!!!!!!!!! YES !!!!!!!!!!!

And I worked out the ONE thing about it that really made steam come out of my ears.

It didn't happen when I locked the door.
Or even when I sat down.
You could guarantee the alarm to go off exactly two nanoseconds after I had actually started weeing.

*Every* *bloody* *time*.

We really are never alone in our troubles, are we? :)

Almiller Jun 2018
I am caring for my Mom and yesterday was my 10 year wedding anniversary. For the last two weeks I have been sleeping in my mom’s room in the other twin bed so I can do all of her bed side commode transfers on a board since she broke her ankle and can’t walk or pickle turn on that foot. I told her my husband wanted to take me to dinner tonight (fri) and that he would love to ha e me sleep in our room with him. She lost her mind. She only trusts me to help her and said pretty much there is no way. She made us feel selfish. We have a baby monitor and I could come in and help when she calls for me, but that’s not enough for her even though her husband (who irritates her beyond belief sometimes) will be in the room in my absence.

Am I being selfish?

Ahmijoy Jun 2018
My husband does the same thing. As soon as my feet hit the floor out of my chair he will ask where I’m going and what I’m doing. I’ve gotten to the point where I say “nothing” and “nowhere”. But, he doesn’t have dementia. Even though I’m not that tired, I will go to bed at 10PM just for the peace.

Mom depends on you for everything. She may not have a concept of time and to her, your five minutes away is endless. Make sure you constantly reassure her that she is safe and you aren’t going to leave her alone. I’m sure you know she’s not doing it to be annoying. And don’t apologize. We understand. 

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