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First off, I'm so glad I found this community of such caring, thoughtful, and compassionate caregivers. This experience has taught me patience and compassion for others I didn't know I had in me. My mom had a fall this week while I was in the same room. I feel really bad about it, but at least I was able to break her fall (I think) so she wasn't injured. Understandably, she calls me at night to spot for her when she has to use the commode at nights. I don't mind that at all, what does bother me a little is that it takes at least a half hour to get her back in bed. 5 minutes getting on the pot and peeing, 25 minutes of her adjusting her Depends and squirming in bed to be where she wants to be. She yells at me when I try to help and then complains it's not right. I know I can pull up her Depends in seconds, and lift her into bed but she refuses my help. I have to hover over her to prevent another fall while she stands forever and "fixes" things. Needless to say, this affects my sleep as it can come at any time of night and I have to be there. Same thing during the day. I retired early last year to care for her. I almost feel like I sacrificed my joy in retirement, but it is what it is.

You need to be firm and set rules of what you can and can not do. See if she understands that and if she responds to you sticking by your rules.
If she can't then her dementia is progressed and you need to discuss with the doctor what can be done for her- diapers, meds, or a health care center.
In the name of love, people are letting others abuse them and treat them like a slave. This isn't right. You have the right to a life.
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Reply to DJ9876543
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at least she still wants to try to do some things on her own. i know i have a comfortable spot when first getting into bed and i toss/turn for the first 15 minutes. i am sure that when you try to help in that way, she feels useless and doesn't like that feeling. Be glad that you retired and yes it will interfere with things you want to do, but right now it is easier than what it is going to be so unless you don't want to have to deal with bigger issues later, get things set up now so you know what to expect, finance wise, etc., Do you have anyone else to help you to relieve you so you can have some days to yourself? are you married or have another person in your life? caretaking can be hard and i wish you luck, but for now, let her do what she can.....take a nap when she does.
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BurntCaregiver Aug 1, 2021
wolflover451,

This is exactly what CTYankeeinOR shouldn't do. Whether or not the mother feels useless and doesn't like it is besides the point. I've worked in homecare for almost 25 years and knew a lot of family caregivers at the end of their ropes because they needed a night sleep. What happens to mother if CTYankeeinOR loses it, gets sick, or dies of exhaustion? She goes into a care facility.
I support maintaining any kind of independence no matter how small. I'm all for even making a person do for themselves in any way they can. Not in this case though. The mother isn't an infant and CT isn't a new parent. Terrible things have happened to infants and elderly people when a parent or caregiver is sleep deprived every night. CT needs to stop the 30 minute pee in the middle of the night with mom.
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You didn't almost sacrifice your joy in retirement. You did sacrifice the joy retirement could have for you and became an indentured servant who's on call 24 hours a day.
Speak plainly to her that if she doesn't want help from you at night when she needs to use the commode then don't call you.
If she expects you to get up for her in the middle of the night and you're willing to, it has to be on YOUR terms, not hers. If she refuses to allow you to pull up her Depends and put her back in bed to get it done fast, then tell her you're not getting up at all. That you refuse to be kept up all night to appease her vanity in thinking that she's still independent. You can play this game with her of a half an hour pee during the day. Not at night when you're in bed yourself.
I had a homecare client like this. She was incontinent and had serious mobility issues. She used a 'pull-up' and was way past the point where a 'pull-up' was appropriate. She was adamant about not wearing diapers. The living room had become her bedroom and she had a bedside commode. My job then was two visits a day because she wasn't living alone. I'd get a call every day from her husband while on the job I went to after her, telling me that she knocked the commode over, was on the floor again and could I come right then. No. I couldn't because I was at another client's home. So, she'd stay on the living room floor in her own mess for a few hours until it was my time to make the second visit. It was a miracle that she never got hurt, but she never did.
One day I came in and told her husband that I refuse to get her up off the floor again that this was the last time. Also I would not be cleaning the mess up again either.
I put the commode out in the garage and put her in a diaper. No, she didn't like it. She threw a tantrum which we ignored and that was the end of it. Better a diaper and some hurt pride than a broken hip.
Same thing with your mother. Insist that she let you help her at night to get it done fast otherwise refuse to help her at all or take the commode away entirely and she can go into diapers.
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Reply to BurntCaregiver
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CTYankeeinOR: I did see your quite positive update of 9 hours ago. I am glad to read that your mother was much better today.
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Reply to Llamalover47
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We took the wheels off my mother's bed and put carpet sliders down to protect the carpeting, this lowered the bed enough for Mom not to have to hop out of bed. The bed is big enough that it doesn't move around even with the sliders.
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Reply to Tiredsotired
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First of all, she is getting dementia and does not understand and doesn't want to know the effect she is having on you. She is determined to be in control and you are enabling her to do that. You should not have retired to take care of her because it will get worse and worse and then what will happen to you - your health and your way of life. Don't fall into that trap. She needs either a caretaker or she needs to be placed at once. Her actions indicate she does not give a dam, or doesn't understand, that you need your sleep. First of all, if you remain taking care of her, lay down the law and explain to her and hope she understands that what she is doing is harming you and you will NOT allow it any longer. As far as rejecting your help, tell her the new rules and that if she does not cooperate, there will be consequences - and you know what they are. Please do NOT allow her to do to you what she is doing. Set down the new laws or move her.
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BurntCaregiver Aug 2, 2021
Riley2166,

The mother may not be at the point where there has to be placement in a care facility. That isn't always the answer when an old person is a stubborn and ornery complainer.
You're spot on about laying down the law with her though. That nonsense of being up all night so mom can pee and fuss needs to have the brakes put on it.
This situation could benefit greatly from some outside hired help. Many times a senior will go harder on their family caregiver and get meaner and nastier to them because they're embarrassed that they have to do for them.
When it's outside help, they often feel better about because they see themselves as less of a burden to their adult child.
I hope they consider some other options besides putting the mother in a care facility.
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It sounds like she wants a little help, with what she wants help with, but she still wants to be able to do some things on her own, like pull up her undies.

If she gets up a lot at night, there are commercials for that women's incontinence machine that may work for her? She won't have to get up and have a possible fall and you would be able to get a good night's sleep without worry?
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Reply to imtheparentnow
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Why can't she use a walker and use a bedside potty chair at night.
You can also have her stop drinking liquids past 6 PM.
MEssington with someones sleep is really bad and it can keep you tired all the next day when you're suppose to be the Caregiver the next day. It can also just end up making you I'll.
If mom won't let you help so it can be fast, just let her wear overnight Adult Diapers and let her pee in them just like a baby does and change her in the morning.
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Reply to bevthegreat
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You are definitely sacrificing adequate sleep in caring for your mom. Her independence is important to her, but your sleep is vital to you. Please consider ways that you can get enough sleep (7-9 hours every night and preferably uninterrupted). Some ideas to try:
Get nap(s) when mom naps
Talk to her doctor about her interrupted sleep and sleeping medication.
Get help from others at night - family, friends, members of faith community, or paid help.
Consider if your mom's needs have reached "the 24/7/365 point of continual care" which is beyond the abilities of 1 person. Either you need more help daily or your mom may be ready for placement into MC.
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Reply to Taarna
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Here are two things you can do for the bed situation, which I had done with my Mom: One-does she have a low profile box spring? If her bed or bed frame isn't adjustable consider purchasing a new box spring that's half the depth and will bring her mattress closer to the floor. Two: I bought a bedrail on Amazon that slides between mattress and box spring and is secured with a strap. It gave my Mom stability getting in and out of bed.
As for the toilet, Is she using a walker going to and from? If the toilet is close to a wall, can you install a grab bar there to give her proper support getting up or down? As for the Depends, just take charge and do it for her. Promise you won't "look". She will resist _ who wouldn't? - but after a few times she will get used to your help.
If you can't have a "therapist" in to help, change the word and call it a "nurse" and let the therapist know why. Best of luck and keep us posted!
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Reply to NYCmama
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CTYankeeinOR Jul 29, 2021
Thank you so much. She's past the toilet stage, I keep her commode by her chair or bed. Yesterday was a little rough. She didn't have to use her commode all day, and then I had to lift her to her chair. During the night, I had lift her back in bed. She was much better today. I think she just needs to get up every so often. Her PCP put an order in to get a PT to show me how to keep her safe and how to lift her safely. Surprisingly, she didn't mind as they weren't going to touch her, just teach and assess the house. As to the Depends, she relented on that as well. I think she trusts me now. Whenever my sister comes over to watch her, she always ask me to help. When I go out anywhere, she asks my sister when I'm coming back. I guess I'm the annointed one now. In CT, it was my brother, now I'm it. It makes it worth it that she wants MY care. I was able to stop in at my former employer and see all my friends. Now things don't seem so bad.
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I suggest a toilet seat by rail rails in shower and seat in shower or tub.get a home health aide to help her bathing and a house keeper to make sure she dresses takes meds.and can cook meals for her.my motherinlaw went from walker to wheel chair to bed.let her do as much as possible as long as she can.good luck. We have medical air bed with half railing so she does roll off.
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Reply to Clsue63
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Maybe, it is her way of having a bit of independence and dignity.
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Reply to Spore1941
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A Sit-To-Stand would help a lot.
But a number of things here.
1) you should not try to catch someone if they begin to fall. You can help them to the ground safely. If you try to "catch" them or prevent them from going down they will easily take you with them. Safely get them to the ground then call Non emergency number for paramedics and ask for a "lift assist" they will come and help her up and get her into bed or onto a chair safely. They are trained to do this. And 99.99% of the time as long as there is no transport to the hospital there will be no charge.
2) you should not "lift" someone into bed. That will just hurt you in the long run when your back gives out or hurt the person you are helping when you drop them.
Getting a hospital bed would help as you can raise or lower it to make getting in and out of it easier. And the mattress is cleanable so if it does get soiled it is easy to clean and sanitize.
Does mom use a walker? that would also offer some support for her.
I also used to place one backwards and pushed over the toilet so that there was a sturdy bar to grasp when he started to stand up. (sorta made the toilet more like an "armchair", I even used it that way when I broke a bone in my leg last year and I needed support when getting up.)
For both your safety and hers you should consult with a Physical Therapist and learn the safest way to transfer her and how to deal with falls.
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Reply to Grandma1954
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My eyebrows have just shot off the top of my head. Your mother broke her hip *twice* and you don't know what a walking frame is?

Get an OT. Just call it "the OT," don't say the whole word out loud. She'll never know.

Some PTs want taking out and spanking. I understand your mother's feelings about that, but the ones in my service are lovely and brilliant at their work.
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Reply to Countrymouse
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cwillie Jul 25, 2021
I'm sure the disconnect is in the language CM, over here they're commonly called walkers. I do agree about the OT assessment though, perhaps a bed assist rail would be another good option, and a commode with sturdier hand rails.
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I agree with Countrymouse about getting an OT and PT to the house.Tell her doctor about the falls. Ask the doctor to order home health.

Also ask for an aide to be sent out to help with bathing. Falls in the bathtub are dangerous. PT and OT will help your mom gain strength and balance. Lack of strength and balance are contributing to her falls.

My mom did home health several times. It does help and is covered by Medicare.

Best wishes to you and your mom.
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Reply to NeedHelpWithMom
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CTYankeeinOR Jul 25, 2021
Thanks again. My sister comes over to bathe her and it usually goes fairly smoothly with both of us there. I bought this awesome shower chair that pivots and slides (well worth the money). I found you don't scrimp on equipment. When I was still working, I paid for a home health aide for my dad, he still fell 3 times when they were there. The thing is one minute all is fine, then not so much. It's day to day.
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You do NOT lift her into bed. Not even if she actually asks you to!

Try getting an OT or physical therapist to come and supervise her getting into and out of bed with a stern, professional eye. She will have her technique corrected, and you will then be able to prompt her verbally. Or, possibly, the therapist will tell her to get a different bed.

If she uses a walking frame, then enough of the nonsense with the Depends. She stands and balances, you whip up her nightie, you straighten that pad and mesh (or pull up) at waist and each thigh - and it's a mistake to be too tentative. Not tight, but good and firm and straight along the line of her back and round her waist(ish). We are on a mission to encourage independence, but too much faffing in the dead of night is good for *neither* of you.

If she doesn't use a walking frame, she should. Probably. Ask the OT.
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Reply to Countrymouse
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CTYankeeinOR Jul 25, 2021
Thanks for the help. That's a no go with my mom. She broke her hip twice years ago and the PT hurt and angered her. The surest way to get her to freak out is to mention "therapy". It's good and bad she has most of her wits about her. Not sure what a walking frame is, but I'll ask her primary care physician about it when she sees her on Thursday.
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My Mom got up about 3pm every night thinking it was daytime. I had to go downstairs to tell her it wasn't daytime yet. Get her back in bed and go back upstairs. I then was wide awake. I am a light sleeper and would wake up to her snoring so I moved the monitor to the hallway next to the door where I could here her call just not every snore or cough. Mom never got up to go to the bathroom.

You may try to stop her liquid intake by a certain time depending on her bedtime. Tea and sodas irritate the bladder making you feel the need to go. Of course coffee is a no no. Limit her water intake. Maybe that will give you a couple more hours of sleep.

You need to tell Mom how she is effecting your sleep. Explain you know she wants to stay as independent as possible but could just please compromise at night with your help. By the time she does want she needs to do you are wide awake and can't get back to sleep. Your needs are as important as hers. Our parents see us an children not adults. And forget that we are Seniors too.
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Reply to JoAnn29
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Welcome to the world of caregiving. I'm not sure you had a question or not, but you said it best in your last line when you said, "but it is what it is." And that it is. Everyone's journey is different, and everyone's breaking point is different.
If you're not getting enough sleep. you may want to look into hiring someone(with moms money)to spend the nights, so they can attend to your mom, and you can sleep. Also it's important that you're taking time away for yourself to do some fun things you enjoy. And if you have to hire some outside help in order to do that, then do it(again with moms money).
The caregiving journey is very hard, and it will wear you down before you realize it, so you MUST take care of yourself along the way as well, so you can continue on this journey. Best wishes.
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Reply to funkygrandma59
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There are a lot of caring folks willing to share their stories here, and I've found them very helpful. Good luck
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Reply to Chapter2
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CTY,

What kinds of help are you looking for with your post?

It would help get you the specific advice you’re seeking.

Welcome!
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