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My mom has a muscular disorder similar to Lou Gherigs. She can only move her feet and hands and it's getting more and more difficult to transfer her without a lift. It takes a full half hour or more to get her settled in be. First the potty, then take off her outer clothes and bra but leave her slip on. It's pretty hard because she is stiff in the arms and has little trunk strength to keep her upright. Adjust her underwear, put the heated rice bag on her feet, fix her pillow, wait for her to tell you where else she's uncomfortable, finally get her settled in and she calls you back in ten min. because she has to go pee. It's so frustrating!! I put a pad on her and tell her to just dribble in that but she insists she has to go, so up we go back on the commode and she pees 2 drips and back down on the bed to adjust all over again. I understand that she has to have someone do everything for her cause she can't move but tonight I told her she has to wait 10 min to see if she really has to go pee. She got so upset at me and told me I was mean, etc. I explained that it wasn't her fault she had bladder spasms but she had to take pity on her caregivers ( my 6 family members and myself take turns caring for her, we do shifts). I told the night caregiver to only let her get up 4 times to pee and the rest of the time tell her to go in the pad. Is it cruel to not help her every time she says she has to pee at night? She gets so exhausted from not sleeping at night then the next day is ruined. I feel guilty being "mean" to her but it feels sometimes she has to go pee for something to do. She is never left alone, activities are available and family members always in and out visiting so she is not neglected and don't think she's doing this for attention. I'm feel dread when I hear her garbled voice say she has to pee or poop once more!

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Could she have a bladder infection or is this belief she has to urinate part of her disease? Will there come a time she will need a catheter and if so, is this the time?
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Perhaps it is time for a catheter. It certainly solved a lot of problems for my mom.
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It is great that you all take turns, that you are kind to her and tell her you know this not her fault. But you are right that she does not need to get up that often and the effort it takes could be better spent in more constructive ways. When my hubby thought he had to pee every 45 minutes throughout the night there was no reasoning with him -- he had dementia -- but I foolishly tried. "It is not possible your bladder has accumlated enough urine in that short time that it needs to be emptied." Of course I was right, but that was not particulary satisfying as I was still awake, standing in the bathroom doorway waiting to escort him back to bed at 2:30 am. Is her doctor aware of this situation? Is there any medical advice about how it can be handled? There are medications for the over-active bladder, but I have no idea if they are appropriate for these circumstances. It is sure worth discussing with the doctor if you haven't already.

Is your mother of sound mind? If so, I would hope you could be more convincing with her than I could with my husband. I can understand that you feel bad about being "mean" to her, and I can also understand the need to somehow reduce the number of re-dressing, re-settling sessions per shift. I hope a doctor can suggest something. Good luck to you!
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My Mom has mobility issues, nothing compared to your situation though. But, I have noticed she always wants to know what time it is after she uses the bathroom. I have noticed her constant glancing at the clock as well. Just about every hour on the hour she goes the bathroom. Whether something comes out or not. I think it's more in her mind...I guess I'll get "isms" as I get older too;-) But, your Mom very well could have a bladder condition and time to consult with her doctor. Good luck to you, blessings and hugs:-)
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Mom does have some degree of dementia but also the muscle disorder causes intense fatigue and that makes her brain quite foggy sometimes. Her bladder is prolapsed and has been for quite some time. I've made an appt for a doc to see if any non invasive measures can be done. She would never survive a reg. operation to fix it completely. She has refused to wear incontinence pads because she says they are humiliating to her. Last night I put one on her anyway and told her she had to use it cause the night caregiver wasn't going to get up every 10 min to put her on the commode. I have a hard time with this attitude of hers as she lived her life before never complaining about a thing. Now it feels like she's become so self-centered. As she's lost more and more strength she's had to be dependent on another person and I realize that can be hard but it's like she's sunk into this "me, me" thing. My sis in law thought I was being mean to her by speaking firmly to her last night but I think this behavior can be modified so she's forced to do her part even if it means using the incontinence pad at night. If love and logic works on kids it should work on an elderly parent right? Now I have to convince my siblings that they can't give in on this issue either at night and by day be quick to see to her needs in a friendly manner. She doesn't have a bladder infection. I guess I just need some reassurance that I'm not being "mean". It's hard to not give in to mom when she looks pleadingly at you with her big brown eyes.
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If your Mom has a bladder prolapse, her physician may be able to insert a pessary. These have been around for a long time, but still work. It is a fairly quick and painless procedure which can be done in the office. You may want to ask about that. Also, if she is having bladder spasms, there may be a medication that willl help. I truly hope that you can get some help for you and for her.
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you are not being"mean". Why do people feel someone is being "mean" when they set a boundary. Part of the reason, we as caregivers, are exhausted, cranky, depressed, ect, is because if our elder says "jump" we say "how high". I set boundaries with my dad and of course he wanted me no where around when the "ugly sisters" would jump and step and fetch.... So they got manipulated and hate me for not playing the game,,, oh well, and there is no way all of that movement and pulling and tugging is good for her either.... hope something can be done.. it is just exhausting to keep doing it that way... hugs
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I am so sorry about all you and your family, especially your mom, are going through. You sound very tired and frustrated. It also sounds like you are grieving the losses your mom and you are experiencing. Do you believe you were being "mean" to your mom? Some times when we are frustrated and tired we are more likely to be "mean." I am sure when you were little your mom got frustrated with you when she was tired and felt bad about it afterward. Have you talked to your mom about her feelings and your feelings about this when you are both a little more rested and not in the middle of getting to bed? Does the rest of the family have any ideas? It may give all of you a chance to vent (nicely) your frustrations with the losses that you are going through and hopefully grow even closer.

I would definitely look into some of the medications that would help bladder spasms and double check for a bladder infection. A catheter is an option, but it is a difficult decision to make and even though it makes caregiving easier, it can add other problems like increased infections. Is a bedpan an option? The resistance of incontinence pads is very common.

You are very fortunate to have so many to help. I would ask why does the night time caregiver have to get up to help your mom, if she is paid then it should not matter what the patients needs are. She should be awake and doing what needs to be done.

Young children are in a "me me" world because they could not deal with the enormousness of the world if they were not. Not that I think you are implying your mom is a child (and even with children I do not believe in forcing behavior - I believe in understanding the underlying need and working with them and not having unrealistic expectations of them), but remember she is not a child and has lived an independent life. Your mom's world is very limited now. It is very difficult to lose your independence and dignity. Though I have Multiple Sclerosis and have experienced some limitations, I have never had to be in the shape your mother and my own mother were in. My mother was never one to complain either. Of course, she never complained even when she was totally bed bound. But your mother's complaining and being self centered is just what she is going through and how she is expressing a need she has. Just because she is not physically the same as she one time was does not mean she has lost her rights and dignity. She still deserves to have input about her life.

Also may be she is not ready to go to sleep at night? My mom and I spent many nights up watching movies, me reading a book to her, or just talking. As people get closer to death, sometimes their sleep patterns change to where they stay awake more at night and sleep more during the day.

Best,
Kitty
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Karen, you are definitely not being mean so do feel bad about it and don't let anyone tell you that you were mean to your Mom. My Dad has dementia and is in a nursing home and is unable to stand up or walk. He tells us and the aides that he has to go, but he wears the disposable underwear, but it takes 2 people to get him out of his wheel chair and on to the pot. It is so hard being a caregiver when the relative doesn't cooperate, we get mad then feel guilty about it. Hopefully the Doctor will be able to prescribe something for her if he determines she has an overactive bladder or other condition.

My Mom is in Assisted Living and since she no longer has to take care of my Dad,
she has become more focused on herself. If I tell her I hurt somewhere, she almost ignores what I said and goes on to tell me of her pain somewhere. My Mom and Dad moving out their home within a week of each other and having to live apart has been the most painful experience of my life so I can understand how hard it must be for you. What gets me through it is that I want to enjoy the time I have with them and that helps me a great deal. I sometimes speak angrily to my Mom and she realizes she is being difficult and then apologizes and then I apologize too.

How do your Mom's other caretakers handle this situation? Do they have any suggestions? You and your Mom are blessed in that you have so many others to help take care of her and spend time with her. I'm sure you will figure out a way to handle this very frustrating situation.
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SORRY,Sorry, Sorry, first sentence should say DON'T feel bad about it.
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Thank you so much for the answers and support, it means a lot. Yes, I think I was more tired last night and was not as patient as I usually am. I'm normally the one in the family to remind the others how difficult it is for mom and she is really not a "high needs" person, but rather one who has absolutely no ability to help herself or do anything for herself so need someone to do everything from scratching her nose to fixing a wedgie in her undies. If mom's mind was perfectly clear I know she would be handling the bathroom issues better but it's like the logical part of her has changed and she is often very child like in her speech and ways. We, as a family, always remind ourselves and each other that mom is still mom and to not force things upon her she doesn't want, although there have been many things she didn't want but we've have had to do for her own health and safety. Change of any kind is very hard for her, in her past life and even more so now when she feels so helpless. I plan on asking doc about a pessary and hope it will work. She will not use a bedpan and is adamant about a lift. It will come time when some of these things will have to be forced upon her for necessity and I hope she can tolerate it. The night caregivers do not have a problem with helping her at night but when she gets up so much then she is exhausted the next day, her mood is down and her strength is worse and her voice so quiet and garbled it's difficult to understand. A good night's rest is so important for her and for all of us. To answer Kitty, we don't put her to bed until she asks to go. If there is company or some activity we wait until she is asking for bed. I wish there was a good sleep aid that worked with elderly people. She's taking Tazadone already but her poor bladder still wakes her up. I guess i, at age 45 need a whole lot more sleep than my mom at age 77. My point I wanted to make with mom was that she is not altogether helpless and there are many things she can do to help with her care, i.e using the incontinence pad, etc. I'd hoped to tap into her innate sense of independence but i guess we'll see. It is great when there are many caregivers but the downside is their are also many opinions as the best way to care for mom so there is a problem with consistency some times. Thanks again all of you and hugs to everyone of you.
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Hi there, I feel your pain. I went thru that with my mom after hip surgery. They NEVER found a thing wrong and said it must have been from the catheter she had in the hospital. I had no help and took her in her wheelchair 3-5 times an hour for about 20 hours a day. I was ready to crack! After about 6 weeks it magically stopped. She wouldnt go in a pad or diaper, its just not normal to feel like we could do that. I hope you find a cure or it stops soon. Oh and also wanted to mention moms neurologist doesnt recommend Trazadone. I do know a lot are on it, just telling you that he said it confuses them and recommends melatonin or depakote, might be worth asking your doctor about those. Good luck!!!!!
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Karen..as long as YOU know what's in your mind and heart, don't worry about what your siblings or in laws think. You are not being mean. It may seem that way to your mom because she has become so limited in her activities. She remembers when she was independent and finds it hard to adjust to these circumstances. She really does need to do her part too in helping with her care. If you explain this to her kindly maybe she will understand. Probably not if she is like my mom. Five minutes after I discuss things like this with her she forgets. She too wants to go to the bathroom every 45 mins. She is semi incontenent and tends to have a bm with every urination. She cannot wipe herself properly and gets poo on her hands, toilet, sink, door knobs, walls etc. if I don't follow her and insist on helping. She resists and says she doesn't want to bother me. I've explained that it is much harder to clean up after she has done it herself than to just go and do the wiping for her, but five minutes later she's sneaking off to the bathroom again. I say sneaking because she will wait til I leave the room then get up and go. Usually without her walker so there's a constant danger of her falling and breaking a hip. I flat out told her she HAS to wear depends. Even though I have the sofa covered with a shower curtain and then a sheet on top of that, I have to think of the dribbles across the floor and the unsanitary condition of having urine or poo everywhere. I had to be firm with her, but I did it kindly.
I say all this just to let you know that we do understand your plight. Most of us are going through the same or similar circumstances each day. The mind of the elderly is unfathomable. Even if there is no clear dementia, they are often a challenge to care for. Most of us are dealing with someone with dementia so it's nearly impossible to make a point with them.
I started giving my mom Melatonin at nite to help her sleep thru the nite. It's over the counter and safe. But I still have to tuck her in real tightly to discourage her roaming at nite. That way I can get more sleep. We must think of ourselves. If I don't sleep, I can't deal with the stress and work of caring for her. Then what? Nursing home? NO! Better to be firm and possibly hurt her feelings than send her to a NH. You have to be the parent now and make the hard decisions for her. She is not capable any longer. Tell your siblings that. If they don't understand, too bad. You're doing the right thing for your mom.
I wish you all the best. You are doing a wonderful thing for your mom. Don't beat yourself up, there's plenty of other people who will try to do that for you.
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When my mom arrived at our home last year, she was getting up about 9 times per night to pee. This lasted about a month. It was so exhausting. When we were shopping one day, I asked her if she wanted a clock in her bedroom on her night stand, and she said, "Yeah, I guess so." I bought her a bright pink large number clock and ever since then, she only gets up once during the night. My husband thinks that now that she knows what time it is, if she does wake up, she goes right back to sleep instead of getting up because she knows it is still the middle of the night.
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Wow, ppj, that is a very interesting insight. It may not do much for folks with bladder problems or sleep disorders or people lacking a sense of time, but it a no-risk low-cost potential remedy worth trying. Thanks for sharing!
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I told a few family members about my episode with mom last night and they were very supportive and "about time". I guess everyone has been afraid to be the first one to be really firm with her. My mom has always been such the matriarch and it's difficult to move past that but now I've done it the rest are overjoyed. It also WORKED! Talked to the night caregiver and she said that she explained to mom after it had been only an hour that she had already used the commode but she'd be glad to check in on her in an hour. Mom fell asleep for three more hours. Maybe we can now incorporate that into the day too. Of course there are some real softies in the bunch that will never refuse anything she asks but I say, feel free if you want to spend the entire day in the bathroom with her. Mom can't tell time anymore so the clock thing wouldn't work. That's why I write in here because I know so many of you are dealing with exactly the same thing. Maybe not always same circumstances but close enough to have similar feelings, etc. I do appreciate all the feedback. Melatonin didn't work for mom but I will ask her neurologist about the trazadone vs depakote. Wonder why depakote as it's an anti-seizure, mood stabilizer. Seems there would be side effects to worry about.
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Karen...hooray! Your family is getting it! Too bad your mom can't tell time anymore. My mom says she can't see the clock...but maybe she can't tell time. what a shame if that is the case. I hadn't thought of that. They do try to cover for their dementia sometimes.
You seem to be handling things very well. Good for you!
Hope you get some rest. Hugs to you!
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hI Karen_I have a feeling I can understand both sides of this issue---you Mom actually feels she needs to go often-and as a caregiver you are frustrated---I recently had a surgical procedure and have that feeling--and I do wear the depends--it sure is less humilitating than to perhaps have an accident. Can you reason with your Mom on that aspect? There is no shame in it--and NO ONE has to eben know. Best, Hap
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have you tried using a bedpan with her? if you do this everytime she says she has to go, she may dislike it so much, she will not call to go pee so often. I'm just saying........
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Thanks annt! I've tried and tried to reason with her about the depends and even the pads. She finally accepted the pads but so far not one dribble has gone in them. Even last night when she wasn't allowed up, she didn't pee in them so I'm thinking this might be more than the actual need to urinate. I wonder if she wakes at night and is uncomfortable in some way and since the usual reason one wakes at night is to use toilet she thinks that's the problem. She doesn't ever complain about discomfort during the day but at night maybe her level of discomfort rises. She's still a little peeved at me as I'm the one who"won't let her pee at night" My sister asked if she wet her undies because she couldn't get up and she said no. Hmmm, to pee or not to pee that is the question here. I don't mind being the bad one in her eyes cause I know she loves me anyway and she'll get over it. We've never tried using a bedpan. How would one go about this if the person couldn't raise their bottom. It seems sort of awkward.
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Oh yeah. How could somebody "need" to pee that often? Have you ever been asked for a urine specimen when you weren't expecting it, and you went before you got to the doctor's office? How much, if any, could you produce? But that doesn't mean she doesn't genuinely feel the urge. I take that back. Sometimes after taking my diuretic I really do have to go with annoying frequency, but I think we can rule that out here. For my husband, part of the problem was enlarged prostate, which a supplement helped, but I think we can rule that out, too! :) The point is something is making her feel the urge. Maybe her doctor can play detective on what that something is, and fix the source of the problem. Until then, gently helping her realize that she needs the sleep more than she needs to dribble in the toilet is a reasonable approach, in my mind.

(If this were just about convenience for the night caregiver, I just say, hey that's the night caregiver's job. But I think this about Mom's welfare. She really would do better on more uninterupted sleep.)
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Karen, I got a talking wrist watch for my mother-in-law who has macular degeneration and can't see up close anymore. She loves it.
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Hi Karen, the depakote is great and calms them right down, it is for mood swings and wandering. Yes it is a seizure medication, my Mom never had a seizure, its just what the Neuro recommends and he is head of the Neurology dept at the hospital. He doesnt believe in antipsychotics unless its absolutely a last resort. At first she may sleep alot on it but after a month or so she will be normal again, but calmer. There is depends underpants in colors at the stores next to the depends that look like real underpants too, Good Luck!
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Once my mom got used to wearing the depends it was fine. In fact I think she appreciates them now. It gives her a sense of security that she won't wet all over herself and my sofa. She still goes to potty as usual but these save her from making a mess all the time. Give your mom time, she'll probably get used to them too. The color one are a great idea, luvmom. Also the talking watch..naheaton.
We all get so many good ideas from each other. What a blessing it is to talk to others who understand.
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Thanks for the suggestions. I agree wholeheartedly with annt's last line. I had no idea there was this great support system out there in cyberspace. I feel lucky to have you all. Give yourself a hug and a gold star today for being a caring caregiver!
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Hey, guess what? My mom actually FELT that she was about to have a bm yesterday and made it to the bathroom on time. I could hardly believe it. It's been happening wo her knowing it for so long. It's amazing how these little thing cheer us up. OMG what has my life devolved into? A bm makes me happy. This is a hoot!! A year ago I was doing deals with big shots and selling businesses and having meetings and doing marketing etc etc....Now I'm thrilled that mama can feel a bm coming on. I'm broke and fighting bill collectors. My mom's bill collectors cause my sucky brother ran up $40,000 in credit card bills before I took mom away from him for abusing and neglecting her. (shoulda put his butt in jail instead of trying to clean up his mess!)Ha! Life is funny. Gotta go with the flow....just saying.
Hope you all have a happy day. Enjoy the small happy things cause very few big ones will happen for awhile.
Hugs to you all.
Ann
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I'm happy for you annt! Ain't the truth? We get so happy about the little things. Keep up the good attitude, it's the only way you'll get through this and congratulate you dear mamma on feeling the urge:)
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Just wanted to shout out a hey to you guys....jean..naheaton..luvmom..Miz..Linda...and the list goes on...the list goes on...drums keep pounding rhythm(and pain!) in my brain...la de da de da....you know the rest..
Just fed mom lunch..those Hormel Compleats are great! 2 mins and add a bowl of fruit and you have lunch. Great time saver. My mom has no problem with sodium and at this stage of the game, I'm not really worried about preservatives. Just gettin her fed. And she loves them. Win win situation.
Have a good afternoon you all. I'm curling up with a Robert Ludlum book. Bourne series. Love this stuff. This one is The Bourne Betrayal. Not written by RL cause he's dead now, but reads just like him.
Ltr
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Check with her doctor about medications, I know that they have them for young children that have a problem with bed wetting maybe there is something that would help you mother.
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