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Hello, My wife and I have been caring for my 92 yr old mother in our home for the past 5 plus yrs. She has had a mild case of dementia during this time. I really feel bad about asking about such a minor problem as I go to this site daily. I never have heard anything about our problem. My mother does not know what to do with toilet paper used or not.

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It sounds like she now needs help/supervision in the bathroom. She needs to be clean to help prevent utis, and of course you want used tissue disposed of properly. At this point you cannot "teach" her the proper behaviors, so you'll need to help accomplish them.
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Just a thought ... is your mother often in her childhood in her memory? (Does she ask about her parents and siblings, etc.?) It occurs to me that there may not have been toilet paper in the outhouse of her youth, and that may be why she can't figure it out. That doesn't solve the problem, but it may explain where it is coming from.
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Hi, thanks for your comments. There was 2 more parts to my above question. I put it in the stories section by accident, then cut and pasted and only the above was displayed. My wife goes into the bathroom with her to see that she keeps herself clean. But she is not always here. I do not feel comfortable in there with her. So I take out only what she should need and hide the roll. Then when she is done i try to track down where she has hidden it in the bathroom, under the edge of toilet seat, under the toilet brush, in a vase..again not a problem.. if i cant find it. Then its up to my wife to get it out of her pants. Our only real concern is her keeping it in her underwear. She does live in the past. She has pictures of her husband that has pasted that she keeps on her lap as she watches t.v. We realize we cant retrain her. I really wanted to know whether this is an isolated case or not. She comes from the depression and doesn't even want to use more than a half a sheet.. Things could be much worse! Thanks again. Carl
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You are not alone with this problem. My Mom is 93 and has always been a toilet paper "saver". She only uses 3 or 4 sheets to wipe with. I keep wet wipes beside
the commode for her, also. I have found her toilet paper in her wastebasket and her Depends pail. She also wipes from back to front and how she avoids UTI's is beyond me. You are right, because you cannot teach them. Anything, and lots of other stuff, she just looks at me dumbfounded. Elderly are always referred to as "going back to their second childhood". Children you can teach, elderly you cannot and they just take steps backwards. I am also going to start checking in different places for toilet paper, because you just never know! She also tells me her Depends are dry, when they are not or that she doesn't need to change them, when she does. Hang in there!
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Crobbin1, you are not in isolation as they all do strange things, especially hoarding things. I used to have to keep a wastebasket identical to my mothers former wastebasket next to our toilet so my Mom would her toilet tissue in there. I tried to tell her its ok to put it in the toilet but where she lived with an old septic tank she had a habit of using a wastebasket. It was a pita but it was ok. Before she moved in with me she would dry her hands on paper towels and hang them all over her bathroom, looked ridiculous in there, I couldnt believe all of them hanging around. I threw them away each week when I went over and she never knew it because she forgot about it. One day I brought her in and showed her and asked her why and she said "those are still good to use again!" and she was originally a neat freak. Yes its minor, yet they all do strange minor things. One day my family all went to her house and my oldest son said to go look in my Moms bedroom. I walked by and there was all her ice creams under her bed. The ice creams she had, we brought, fudscicles, etc. I put them all back in the freezer and went over the next day to talk to her about it. She claimed she knew she did it and was going to put them back when we left, she didnt want us all to eat it because she doesnt get out much. (gotta laugh but sad) Oh can they fool us in the beginnings and we believe it! I started to find small bowls of cereal in her drawers, and all kinds of things in strange places that they didnt belong. She put frozen items in the refrigerator and refrigerator items in the freezer, maybe a spoon or cup in her sock drawer, weird minor things just telling us they are losing their minds slowly. I wish we could leave pictures on here because I would post a picture I took on insider her refrigerator, she even had a box of tissues in there! lol Poor mom.
I went over one day to see a completely black burnt small pizza out in the snow. When I went in the whole house had a smoky leftover smell yet she denied it to the hilt that she did it. I bought her a microwave that had a dial, not a keypad, and put thick tape on it so it only went so far to a minute at a time. It worked, she stopped burning her pizzas and her muffins which also started to happen. She would press in 1-0-0-0 instead of 1-0-0 and try cooking things 10 minutes instead of a minute. Sounds like your Mom is in very beginning stages so be prepared for a lot more weird minor things to change to major things. My Mom moved in with us five years ago and soon started to get up, drop her pants, squat (sometimes on the edge of her bed) and pee ALL over the floor. Sometimes she dropped her pants in the pee and hopped back into bed all wet. I almost fell sliding on it the first day it happend and I couldnt figure out whaaaaaaa's this??????? We have laminate floors in the bedroom, which I suggest, because now I have to lift Mom with a hoyer and you need smooth floors for that. Ahhhhhh I am sending good luck to you in your adventures with your Mom and bless you for having her in your home. My Mom would be bedridden now but I hoyer her into her wheelchair and recliner and keep her with us for meals to keep her mind stimulated as much as possible. She only says a few words here and there but loves us singing. So precious your Mom has a picture of her husband , after 57 years my Mom forgets her soulmate now. Maybe blow up a big picture for next to her bed so she can see him all night, I did that. Cheers!
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Carl - you deserve the king of the month crown! How thoughtful you are towards your MIL. Once their dementia is at this level of disconnect there really isn't much they can do to understand or "retrain". It may be that your MIL is entering another phase of her dementia and her caregiving needs may be exceeding you all's ability. 92 is up there

Try to make sure that the lighting in the bathroom is bright so that she can see as it well....gets kinda dark down there. Maybe have a floor lamp by the toilet. Also if she is in white panties, change them to panties in a solid bright color so that she can more obviously see the white toilet paper against the hot pink panty. You can also get a sharpie marker and draw lines atop the toilet paper roll so that when you find bits of paper you will know that it likely has fecal matter and needs to be handled differently than Kleenex.
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Was your mother reared in this country or another country? Many countries today still don't allow you to put the toilet paper in the toilet. Have you ever been on a plane from Cairo to the US? The bathrooms become a horrible mess as people throw it on the floor.
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My dad kept putting dirty dishes back in the cupboards because they weren't 'that dirty and could be used again". He also would vacuum the kitchen counter tops. He did use the toilet paper, folded it neatly and stacked it beside the toilet and used it, then folded it neatly again and stacked it with the clean stack. If I wasn't on top of things, he would try to wash his Depends in the bathroom sink thinking he could reuse them I reckon. And yes, he was raised during the Depression. He was a harsh dad when we were growing up but I was blessed as he demented, he became the sweetest man-child and made my introduction into care taking a 'walk in the park' and I wasn't aware of that at the time. Now 12 years later, I became my husbands caretaker and he brought his controlling, verbally, emotionally, financially abusive personality with him but on 'mental steroids" and has made caring for him almost unbearable. I share that just to give perspective for those who care for loved ones who do odd things but are not mean spirited.
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Again, thanks for your responses. They say "misery loves company" its really nice to see we are not alone. The septic tank idea seems to make the most sense, since she used a basket too. We have been referring all the caregivers that we know to this invaluable sight. Thanks again, Carl
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My mom will not use enough toilet paper due to her arms not working that well. *I just go in with her and i give her a wet and warm washcloth to use with soap to make sure that she is clean. She does have a problem with me washing her backside but one time I found some poop that she did not get with the TP. I try to make a joke about it and sometimes that helps.
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Just been reading the posts here and wanted to say you all have such great hearts. I am really touched by the level of love and care each of you give to your family member in need. It is very touching to read and brought tears to my eyes. God bless you all.
BTW- I wipe my own Mom's butt when I go up when she has a BM. She is pretty fragile. Mentally she is pretty with it so we just try and laugh our way through it. I have a daughter with special needs and wipe her butt as well. Lots of butt wiping. I use a lot of wet ones. Easier than dry toilet paper.
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glad to know I am not alone in this toilet paper thing. About a year ago my dad stopped putting "used " toilet paper in the toilet. No matter what I do I cannot get him to do differently. He puts it in the trash can in the bathroom--ugh nasty! Of course it's not as bad as if he were putting it elsewhere or hiding it so I guess I'm lucky in the respect.He has seemed somewhat "fixated" on bathroom stuff in general.. will not flush.constantly thinks the toilets are clogged etc. Thinks the toilets are leaking when in fact it's urine running down from him...lovely!
I also have a very hard time trying to get him to ever wash his hands and when he does it's not very well. the fact that he has Hep C makes me paranoid in caring for him. I wear gloves when I need too, but I swear my hands are so worn from washing them and using sanitizers!
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It's good to know that the toilet paper issue happens to others too. When my MIL was in the beginning stages she used to go into the bathroom, use it, and then she'd either put the toilet paper in the sink or bathtub. I would find it in some weird places. She used to also dip it into the toilet and put it in the trash can for some reason. I don't get it, and I know I never will. Only God knows how the brain is truly affected by the disease. She would also hide things too. She used to do crossword puzzles before she went downhill and when she was able to still have her own bedroom. We would find torn up pieces of her puzzles and sometimes whole puzzle books under her bed. I think subconsciously she may have been wanting to hide them from us because she knew she wasn't able to do them right anymore. She would just sit and stare at the pages for hours and kept saying, "it just won't work." I felt so bad for her. I can also completely relate to the comment from you Reverseroles about your mom dropping her pants and peeing all over the floor. This is the reason my MIL doesn't have her own room anymore. She would wake up in the middle of the night and pee everywhere. I think she didn't realize where the bathroom exactly was anymore. Finally, we couldn't take it, and we had to move her bed into our living room so we could keep an eye on her. It is really tough to take care of someone with Alzheimer's because I honestly shake my head some days because nothing she does makes any sense logically. It truly is a horrible disease.
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I'm just so thankful God led me to this sight. It does help to know others are going through so many similar situations. This is all so new and very emotional for me. My mom is 88 and was very independent and lived alone. Fell and broke her hip but can't walk without supervision (just not safe even with walker) and is in an assisted living facility. Some days i think she's fine there (but lonely) and other days i think she needs more or that I should bring her into my home and try to care for her here... It's all overwhelming. Still maintaining her house and her finances along with mine and my family and job...and ALL the other things that don't stop. It's crazy but comforting to read comments from other caregivers in similar situations. Thank you all for sharing. My mom too doesn't like to use much toilet paper...afraid to stop up toilet (or from the depression) and sometimes when I help i find she hadn't wiped well. She HATES having to have help...Q: How do you keep up with weather or not they have a UTI? Sometimes she seems to be "with it" and others confused. Nursing staff says could be from UTI...but do we have to do them every time? How do you know if it's from UTI or if it's just dimensia??
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azcaregiver, when my Mom kept peeing on the floor I was out of my mind. I then found unstrippable pajamas online. After buying one, I made some by sewing pajama pants and a top together with a zipper up the back. They cannot get it off and pee in their diaper or pad. Its a stage, it ended, like all of the stages do, thank God!
lalabusch, I have my Mom in my home because I feel she needs one on one attention, she is 91. No doubt its a lot of work, I retired from my job because I had to, her money ran out for caregivers or daycare while I worked. She would do it for me. I am in close contact with her doctor and he gives me a supply of amoxicillin to treat her when I feel she has a UTI. I can give one daily for prevention and it works. The urine is super smelly/dark and they are very unusually crazy acting when they have one, or they pee a lot, I can tell. My Mom used to poop herself at daycare and has been home with me since I left my job for over 2 more years now and she has not pooped her pants once, I can tell if she has to go and I get her on the toilet (she cant walk, its tough), and she goes. There are advantages to them being with you, no running back and forth and they are right there in their bed or recliner where you can see and comfort them, or just put music on for them. You know what they eat and drink and they arent exposed to illnesses. I have a fabulous supportive husband so I am lucky. He now helps me hoyer her into bed and change her when he gets home. You have to do what you think is best, thats all I can say. I've had Mom 5 years since she broke her hip also but we had PT 3x weekly and she learned to walk again until she had a stroke dancing one day at daycare.
Loving everyones comments, hugs to all you caregivers! RR
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Had to laugh (sympathetically!). My mom uses toilet paper for everything (rather than kleenex, paper towels, etc.) She keeps a roll in my car for her nose, and each day rolls off and folds up sections for her pocket. If she makes a mess in the bathroom, she insists on cleaning it all with toilet paper. When I go to sweep and clean I find little 'rice' sized pieces every where from her 'cleaning'.
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As everyone said, your case is no isolated. My mom is 84, lives with me and has dementia also. When I realized she did not know what to do with toilet paper I was totally shocked. when I tried to explain to her about the using toilet paper she just kept saying yep but I realized she had no idea what I was saying. She does not even use tissue in bathroom unless she is using to dry her hands. When I give her napkins at the table to wipe her hands she just folds it up and put in her pocket. I tell you we as caregivers have some stories don't we?
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It is so sad, because it seems that we all have the same stories. I have to keep after
Mom with her little sections of toilet paper, 4 tops to wipe with, LOL!. She will use that and then not remember to wash after using the bathroom. I've done figured out that there is not enough of me to go around in all the different places that I need to be.
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My MIL (alzheimers) uses a roll of toilet paper a day...........yes, she has stopped up my septic tank. I told her that her bathroom is a nice padded portable commode chair and that our bathroom is gone and the bathroom door goes to nowhere. wink wink.
This is the only way I can regulate her at all times and get her to throw her voluminous amounts of toilet paper into the waste basket.
I'd much rather empty the potty chair than watch my septic system overflow lol
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My mother uses a lot of toilet paper too. Sometimes she will stop up the toilet and it will overflow. She uses the hand towels to wipe up the water and leaves the wet towels on the floor.
I've begun waiting outside of the door these days to make sure that she washes her hands after each toilet use. We have found fece on the toilet roll holder, the door knobs, the floors, and she wasn't washing her hands after wiping. I ask her if she has washed her hands and she says "yes" but she hasn't because the soap isn't wet. So, I get her back in there and have her wash her hands. I tell her that she doesn't want to eat with those hands does she?
My husband and I sanitize the door knobs, light switches, anything she touches each day. It's a major chore to keep up with someone with dementia but she's my mom.
I don't know what I will do if she forgets to wipe. I haven't reached the point where I am wiping her butt but I am sure that day is coming.
My mom also likes to keep wads of toilet paper in her pocket.
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I sympathize with this problem of knowing how to wipe and how to wash ones hands. I changed one of the faucets to make it an auto-on faucet for water, since my mom has also forgotten how to turn on the water most of the time. I have antibacterial Wet Ones hand wipes in containers everywhere in the house, all of the bathrooms, etc., I use the yellow and white containers with the Citrus Scent.
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Crobbin, you are doing an excellent job caring for your mother. I assume she has not got to the stage of needing diapers all the time. Maybe when your wife is not going to be home and you have to deal with the bathroom, she could put Mom in the pull up kind of Depends which feel very much like ordinary underwear so she can goes to the bathroom as usual. When your wife gets home she can change her and check for cleanliness and errant TP in the unmentionables. Perhaps you can put a picture of a toilet in the bathroom with a hand dropping TP in the toilet to help remind her. If you continue to feel uncomfortable going in the bathroom and it is very understandable, she is your Mom after all BUT if she needs an eye kept on her install a peep hole in the door like people put in outside doors so they can see who is there. When you look and see she is dressed again knock on the door and ask if you can come in an then supervise the hand washing. You don't have to watch the whole sorry process just peep from time to time. I have seen sons fully care for their Moms (ask The Capt) and others that recoil at the idea. One friend thought it would be nice to take his Mom on a cruise. I asked him if he was going to change the diapers and give her a shower. he got a horrified look on his face and said " Oh God" that's never going to happen" So I guess Mom is NOT going on a cruise. Now he's trying to figure out how to get Mom and her scooter to a local tow path so she can enjoy the out doors and he can run beside the scooter. I don't think the scooter will go fast enough but I guess they will figure something out just as you will.
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My mother has dementia and she is driving me crazy. She refuses to flush the toilet. Sometimes I find wads of paper in the toilet and also in the trash can. I beg her to flush every time she uses the toilet, but she doesn't. I have a sign on the toilet lid that says "FLUSH" and one on the trashcan that says "DO NOT PUT TOILET PAPER IN TRASH CAN. FLUSH IT!" She can't take it in. Sometimes, like today, there was a bulk of wet, used toilet paper in the trash can and some in the bowl. When I went to flush it, the tank overflowed. She acted clueless about the wet paper. She uses more toilet paper than anyone I've ever known. So, here I am, trying to house break a new puppy and also trying to house break my mother. I look in the mirror and see a haggard, tired looking person. My mother is sucking the life out of me and literally killing me. She is not the person I once knew. And, it's not just the poor hygiene in the bathroom. She rinses her cups, utensils and plates instead of either washing them with hot sudsy water or putting them in the dishwasher. I caught her using her fork to take jam out of the jar and when I said something about it, she said she wiped it on the napkin first. Geez! I have to watch every move she makes. I could write a book about the strange things she does. I tell myself to remain calm and not react, but it is so hard to do. So, I pray and I do drink a lot of wine. It's either that or drugs. I know that I would rather be dead than have dementia. There is no one to look after me if that happens. I am the sole caregiver even though I have nieces that my grandmother raised. They are self-absorbed and, even though I've told them how things are, it never enters their minds that I might need a break. You'd think they'd the very least they could do would be to take her out for lunch or dinner occasionally, but that never happens. They don't even acknowledge her birthday. My husband understands, but he is a busy man, working two jobs and active in our church. I vent to him and he is understanding, but, in the end, it is my responsibility. I understand now why some people commit suicide.
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Amanda,
It is not possible to retrain an elder with dementia so you have to work with what you have. Do you have more than one bathroom. Can you designate one for Mom's use and lock the door to the one you and hubby will use.
Remove the toilet paper. Keep it out side the BR hidden but where others can find it. Unroll enough paper for one trip to the BR. if necessary wind it round an empty roll
Keep a bin lined with plastic in the bathroom so that she can drop her paper in it.
It would be nice if she flushed and put the seat down but accept that she is not going to. You will have to be vigilant and when she goes to the bathroom wait out side and take her back in and make her wash her hands.
If you are not close by put an alarm on the door. A couple of bells will do or something more sophistocated if you are able.
Stop expecting her to do things that she is no longer able. .She may look normal and be physically healthy but her brain is dying.
When you invited her into your home she was probably a bit forgetful and not able to manage alone but she is getting to the stage where things begin to go down hill fast.
You are clearly overwhelmed.
Sit yourself down and ask yourself honestly whether you can or want to continue to do this. You love your Mom and want to do the best you can for her. Ask yourself if you would want to be cared for by someone with your level of anxiety who is self medicating with alcohol. What will happen if you are inebriated one night and she breaks a hip. How much can you help her then.
If you are going to continue to care for Mom at home you should go to your Dr and ask for help. An antidepressant may help you to cope. If you do not feel able to continue start looking for alternatives for Mom as she may have many years ahead of her. You may not wish to place her in a facility and she may not want to go but if you become a basket case you won't be any good to yourself or your husband. Take a deep breath and give the future some serious thought.
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Veronica 91,

You blew my comment about wine out of proportion. I have a glass at night to unwind. This is after my mother has gone to bed. I was feeling extremely stressed when I wrote my initial post. We have a septic tank and my mother is causing lots of problems, with the toilet overflowing and big bunches of paper getting stuck in the line. You must think I get drunk. This is not the case at all and I do not take any types of drugs. Ever! However, I am only human and I get tired of hearing my mother complain ---"Just wait until you get old and crazy. I think I'll just go jump in the pond. You'd be better off if I was in the ground." It really gets me down when my mother's health, except for her memory, Is quite good. I know so many people who are seriously ill and I tell her that she has so much to be thankful for. We live on a beautiful farm and she can sit and watch the birds and animals all day. There is so much beauty here for her to see and she should be thankful that she is able to stay in her home. I do everything for her, always have and always will as long as I can keep going. It's only normal for me to get a little down once in a while and that is why I had to vent.
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Amanda, I understand. My MIL won't ever throw away a Kleenex or a paper towel......... but toilet paper..............oh my. She uses tons of it. My only solution is to lock our bathroom door (we have only one bathroom) and that leaves the portable commode chair for her. I keep that chair beside her bed and guide her toward it every time she "has to go." I tell her that our bathroom is "broken." Yes, I have to empty the bucket every time but at least that gives me control over the state of my septic system. I direct her to throw the TP into the garbage can (lined with plastic bag) which is right beside the commode chair. If I didn't do this, our plumbing and septic would be a disaster. I don't understand the TP thing at all. Does anybody else? What drives them to do this strange thing?
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We had problems with Mom flushing sanitary napkins and backing up the septic. Depends helped immensely with that as they are hard to remove, but she is rather the opposite of your problem and determined to flush the evidence away.
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Amanda I am sorry if my comments on the wine were way out of proportion but they way you wrote make me envision you with a bottle chugging away till you fell asleep and the empty bottle fell to the floor. I really am sorry I totally understand your need for something relaxing at the end of each horrible day. you really do face an uphill battle and none of us can tell you where it will end.
all we know is that it gets more difficult and that those with dementia ( and other mental illness) simple do not have the capacity to appreciate the good things around them. While you and I would love a quiet hour by the window watching the animals frolic in the sun and laugh at their antics Mom does not know why they are doing all that jumping around and it irritates her. I used to stand and watch my horses in the pasture when they were let out and laugh as they ran and reared and rolled then settled to the important stuff - eating!
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Hey, now that we're talking about wine........lol........
Sometimes when I want to feel a bit of normalcy, I get my MIL into bed, then sneak into my living room, light a candle and enjoy a glass of shiraz with some dark chocolate. It makes me feel close to my wonderful husband who passed away in May 2010. His favorite was shiraz.......with a piece of dark chocolate. God bless him.
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My 76 year old Mil has been in assisted living for 6 months, since her second knee replacement in November 2014. With many signs of dementia in the 5-6 years prior to her surgery, we were afraid the anesthesia and the surgery would put her over the edge. Dealing with extreme paranoia, anger, accusations toward her family, etc. was a daily source of anxiety for my husband and I, as primary caregivers. She started showing definite signs while still living in her condo, and we found ourselves exhausted from daily trips to check out false events. Needless to say, the surgery was actually somewhat of a Godsend. Assisted living has given her activities that she would otherwise never have participated in, but she has also gone downhill in her personal hygiene. I go ever 4 days and "help" her get a shower....and wash her hair. She wears the same clothes for the days I. Between and always as, "I just put these panties on this morning". They are the same ones she put on when she last showered! She also takes 3 squares of toilet paper, wipes, and puts it I. The trash an. Even with bowel movements...and she started wiping from back to front! It breaks my heart, but I don't badger her about it, I just suggest she flush her toilet paper instead of smelling up the trash an. She doesn't listen and my words are empty. It is so difficult to watch, but I know she has no control over her mind anymore, and I also know if I am there one day, it would be a blessing g to have a patient caregiver.
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