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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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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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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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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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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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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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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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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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