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Hope I had this with agencies and that is quite frankly why mum doesn't have agency carers in - that and the exorbitant costs for to a not very good job BUT and here is a really good tip. If you want carers to work under your routine (and by god don't we all) then you have to involve the agency from the outset.

When I interviewed the agencies (note this bit because they like to try to interview you!) I explained that I had some non negotiable issues that I was prepared to cover the costs of.

They would either wash their hands after every task OR they would wear gloves and change them after every task.

I would provide the gloves latex or non latex.

I would also provide hand creams that are dermatologically safe and

I would provide sanitisers for the areas that needed sanitising but

I would NOT accept the use of hand-gels in the house as we have running water and there is no need for them

I expected everything that was soiled to be disposed of and double bagged as is the health requirement or using the designated sanitised bins that I would provide (bearing in mind I had them anyway for when the carers weren't there.

I expected the commode to be cleaned after every usage in a specific way

I expected them to help Mum help herself as much as she could and not to do everything for her

Now this is the most basic of care skills. This isn't over the top at all. It forms the every foundation of basic performance not excellence in care. No takers from two agencies.

one said that because I had such high demands (pffft) it would take more time and therefore cost more.

I reported two agencies and didn't use the third hence me doing my own caring because if nothing else I know it is done bloody properly in terms of hygiene.

The social workers and I had a very heated discussion. She said I seemed belligerent. I told her she hadn't seen belligerent yet but if she wanted me to I was quite happy to escalate the conversation to belligerence. hen I took a deep breath and said this.

I don't KNOW what level of care YOU think is suitable; I don't even know that you understand the basics of basic infection control principles BUT I DO and I WILL NOT accept people who purport to be carers and no zip about hygiene coming in to MY home and making it unsafe for my mother. Do we understand each other now? GOOD - NOW YOU CAN LEAVE.

Im never good when rattled - they haven't been back! They sent others to make sure I was following my own practices and I am very happy to say the woman who came was gobsmacked that my records were so complete. I bet the social workers were too!
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OhJude: Good catch on the gross gloves! Yikes! Yuk!
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Thank you for replying. I did changed caregivers. I was hiring caregivers through agencies. but it looks all caregivers who come to take care of mom have the same issue. they complaining about drying hands. I repeat all the time and wrote notes and a list that to make sure washing hands and make sure mom wash hands and this is not an option. but one of the agencies (the owner ) told me he can not provide me with a caregiver any more because I ask for too much sanitizing even I only ask to wash hands for 20 to 30 seconds after helping mom in her hygiene or cleaning toilet or touching trash or any house chore they do. It should be very acceptable. But it looks no one care. all they care about collecting money and not about health issues. I saw caregivers take wet cloth after rinsing (because of an accident mom had) water dripping on the carpet and floor. Once I say some thing that she should put it in a bag or in a container they do not like what I say. They agree with me in the moment then once they finish their day they complaining to their supervisor that I am over supervised them or I am asking for too much sanitizing. I do not over supervised any one. When you hire a new caregiver I have to make sure everything will be okay for mom. Make sure mom will be treated right.. make sure mom will get clean clothes, clean food (washing hands before they give her meal). I noticed many caregiver they leave the bathroom open when they shower mom. I ask the caregiver to close the bathroom and bedroom doors so mom will not catch cold. but they do it at the time. then the second time the caregiver forge. If I tell her to close the door she get upset. I noticed they are neglect, carelessness, and care less about hygiene. All they want to come and sit as a companion ship and watch TV (one of the caregiver asked me if she can sit and watch TV!!!!). mom has dementia she does not need only companion ship she needs help in daily activities, I got tired of caregiver, not sure what to do next. I am really tired. When I am tired I do not want to lose my temper when I help mom. I reached to appoint I curse mom ( like say your are shit). I never expected from myself I will be nasty with mom. I really love mom. I can not imagine the world without her. I know one day I will regret all this and I will wish mom will come back. After being nasty with mom, And rest may be a little I start crying and go to mom apologize. mom always forgive me. I feel guilty. How come mom forgive me and I am the nasty one. More than one doctor diagnosed me with chronic fatigue. They advised me to rest otherwise I will end up in a nursing home. Please understand I am not giving myself an excuse. But I really need to help mom as much as I can. some time I worry about myself who will help me when I can no longer help myself with this fatigue
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My wife and I care for her mother who has full blown Alzheimer's . We have someone come in for the afternoons when we are at work. We go through the same things everyone else does,but my mother in law is dialed into the kitchen. She rarely washes her hands and always wants to handle silverware and plates. She either wants to set the table or do her fersion of washing which means rub with fingers,dry ,and put away. We have dared for her for going on eight years. There is so much tension in our home. From the moment she wakes we deal with the kitchen or what do you want me to do. If we give her something easy she can't focus and is right back in the kitchen. Besides not washing her hands her vision is terrible. We have meds that need to be put in her eyes twice a day. We tell her each time not to wipe her eyes because the meds need to absorb. The minute we look away she wipes her eyes. We are so frustrated at this point. We do not get any breaks. My parents are both 98 ,live at home and need me at their home every day. My dad will call me multiple times a day. It is always we need to do something or other. Please understand I love my parents,but my dad just expects me to drop whatever I am doing and come to his house to take care of what is usually something minor. My sister lives close by.but I get the calls so between what we have going on at home and my parents I am ready to blow a gasket. My wife and I have not had a break in six years.
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If she refuses to wash her hands then she must wear clean gloves every time and please do watch for this one.

One care worker thought she wore gloves to protect herself and yes they do do that too. So when I caught her walking through from the bathroom to the kitchen WEARING THE SAME GLOVES she had had on when she wiped a residents backside I asked her what on earth she thought she was doing. So I took a substance that they use in training that lights up under UV light and asked her to repeat what she had just done - I gave her clean gloves and sprayed the substance on. She went from the bathroom to the kitchen and when we turned the uv light on she was horrified. it was on the floor, the door handles the doors, the handrail, the carpet to say nothing of what was on her clothes and even on her face and hair. She changes her gloves every time and I am absolutely confident that she will continue to do so.

Acid test by the way for hand washing. If you wash your hands properly and thoroughly and then dry them thoroughly you will be able to slip your hands into even tight fitting latex gloves easily. There are heaps of diagrams that show you how to hand wash properly - I would put one up in the bathroom and tell her to observe it or consider another occupation - her behaviour is too risky as it stands
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You might put it to her that if she doesn't wash her hand after taking mum to the loo she WILL be ingesting urine and faeces - that should stop her in her tracks. Then go on to explain its place in cross contamination and infection. I lost count the number of times I had to tell care workers about hand washing.

Let me be very clear here.

It takes 25 seconds before the soap activates and cleans effectively.

The alcohol gels are only suitable for use in an emergency they are not to be used instead of hand washing.

After 4 uses the bacteria WILL grow on the gel.

Bacteria need four things to thrive food moisture warmth and time.

If you don't wash your hands thoroughly and if you don't dry your hands thoroughly afterwards then you will be contributing to bacterial growth and subsequent contamination.

Show her that. I wrote an educational book for care workers on infection and contamination and I can absolutely tell you that this information is correct. The senior infection control adviser of one of the world's leading heart specialist hospitals told me this when we met, and trust me she would know.
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Hope 14, if she isn't concerned about something as important as washing her hands, then what other care-related issues does she find "inconvenient"? I good caregiver has the correct tools, including a good barrier cream for the hands. What a petty point for her to argue with you about. You don't need that. No you are not being paranoid. Phone her person in charge and ask what the protcol is for their workers.
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Hope14, Of course the caregiver must strictly wash her hands! The top defense against the spread of germs. Teach her, teach her to use gloves, teach her to use lotion after washing. Teach her-require it! There is no workplace that does not require this hand-washing protocol, and you can require it in your home. Show her. Post signs in the bathroom. Post them in a language familiar to her if her language is different.
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I cared for my husband for nine months until his death last month. I also was worn out and tended to get a bit testy with him, though I knew I was screaming at the stroke. He could "go on" testing me for 12 hours straight. I asked my doctor for some pills to help ME sleep...they were already giving him meds that worked for him, but when your nerves are raw, it doesn't matter. I do not regret keeping him in a hospital bed in my living room. I miss him terribly...even the times he was mean and ornery. I have plenty of time to sleep now. He is at peace. He was my hero and didn't deserve to die in this manner, but we accept what God gives us and rest, rest, rest. God bless you and give you strength.
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I hope you are still coming back to check for new answers because I suffered the same way for 1 year and it was the most hellish year of my life. I finally mentioned it to my mother's doctor, and the doctor said, "Why didn't you say something sooner?" and prescribed a very tiny dose (the lowest dose plus cut in half) of a medication that makes my mother sleep through the night. I had been violently opposed to medicating my mother for what I saw as being my own convenience, but the doctor explained to me that as the caregiver, I had to be alert and healthy in order to care for my mother properly. What if I gave her the wrong medicines because I was too tired? What if I drove off the road and hit a tree and killed myself because I fell asleep at the wheel. I have to tell you, I am SO glad I listened to that doctor. Not only do I get at LEAST 6 hours of sleep at night but Mom gets the sleep she needs too.
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If this caregiver doesn't do things the way you want, then ask for another one until you find one that does or at least you might have to compromise on some things. No one can do things the way WE do and sometimes we just have to give into that but they should be willing to work with you if you insist on some things. Yes, it can dry their skin out but she could at least use a wet rag then following with some lotion. As far as your hospital stay, check into a facility that offers respite plans. My mom's takes patients for a week or 2 for those that have to go out of town or in the hospital themselves. Good Luck and God Bless
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Thank you all for your support. yes my brother took mom for a week and it helped. I am still tired and week. my brother still try to help me. I hired a caregiver for 8 hours a week.
but I do not feel caregiver give me a lot of help. they do not clean the way I want ( she does not clean her hands after bathroom as suppose to be. she saying washing hands will dry her hands). my brother telling me you should expect that and accept it. I am scared mom or I catch disease. am I going too far! not sure may be. any way I will try her and see if she will give me some break. also I need someone to take care of mom while I am getting my treatment in hospital for being severely anemic.
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carespeaker1.....Excellent analogies! God knows what is going on and will forgive but you must also help yourself. I lived with my dad for 6 mos. 24/7 leaving my family at home to take care of him while he recovered from heart attack. 3 weeks into it had to put my mom into a alz/dem. facility. He had been caregiver to my mom for 5 years as she continued this journey. Fortunately she could dress, and eat and communicate but short term memory was shot. I gave as much support as possible but he was there most of the time. When I moved in she just lost it because her schedule and life as she knew it had changed. The last straw was her yelling at me and me back like a teenager would yell at their mom because they got grounded. She had hit my dad because he wouldn't get up out of bed to take her to eat (we had just eaten but she didn't remember). Fortunately for us we found a great facility however that's not to say the first year was easy. For that matter the last 5. BUT.....these people are trained to take care of alz/dem patients and they get to go home after their shift and come back refreshed. YOU/we don't. They get paid (albeit not enough but still) and WE don't. Please, please as others have said before, look into every outlet you can for help. Church, daycare respite, medicaid, elderly social services. Again as said before......if you are down for the count she has to go somewhere or some else has to take care of her. Don't feel like an awful daughter for letting someone else take care of her. If you can get the help you need it will only help you be a better and more loving daughter and he able to help her better. Good luck and God Bless
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Now that your Brother has cared for your Mom for a while was she as difficult for him as she has been for you? It was my experience that whoever was around the most seemed to get the worst behavior from Mom. That would have been my Stepdad before he passed away. As he was dying he told me I was gonna have *$#@@ with my Mom. I had seen stubborness in her that was present before her Dementia happened but I had no idea what I was in for. She was at home for a year and a half and it was $#@@. She had a hospital stay and her Dr who is a Saint convinced her to go to a nursing home for Physical Therapy. He convinced her that if she did not she was going to be in a Nursing Home permanently soon because she was in no shape to care for herself at home even with help. To my surprise it was all arranged when I got there for her discharge from the hospital. I was in shock! I cant remember if Medicare paid 80 or 100% of the Nursing home charges. She did have a medical supplemental that may have picked up the 20%. Mom cooperated and did well while she was with physical therapy staff but once back in her room she refused to use walker and continue to fall constantly. When I would visit and she would be stumbling around room and I would ask why she wasnt using walker she would well...not be very pleasant. Sadly because she was so stubborn she did not leave nursing home. I got outside help and along with the Nursing Home we got her qualified for Medicaid. All but $60 month of her Social Security and retirements went to Nursing home and Medicaid paid the rest. Except for a few occasions she was sweet as cake with all Nursing Home Staff. Completely opposite from the way she was at home with me caring for her and home health folks that helped me. After a couple months of adjustment where she wanted to be taken home she did adjust and was pretty content. She was being bathed regularly, fed regularly, took her meds like a nice lady. This was not happening at home. In our situation my Mom did not would not take suggestions or instruction from her "child". So my point is your brothers experience might be a different one than yours is as a caregiver. If he has a difficult time with her also and doesnt want to help anymore BEG him to spend the endless hours on the phone to find YOU some help with her care. No one EVER wants to see their parent in a nursing home! But sometimes it works out for the best. Believe me if Mom goes to a Nursing Home your job is not over. There will be Drs to deal with if you choose to be involved. Plenty of paperwork coming in the mail if you choose to read it all and there will be visiting Mom and in my case lots of phone calls from the Nursing Home because Mom has fallen. But...it is not a three ring circus 24/7. Please let your brother help you. I think it is proper for a child male or female to care for their parents hygeine if they are willing.
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As I cared for my hubby after his liver transplant, I found my self so sleep deprived I was worried I was making clear headed decisions and making sure he had the exact meds, etc...this was only 4-5 months of round the clock care and zero respite. Not one minute. We had plenty of "blowouts" as I was simply so tired (sleeping in 20-30 minutes snatches when he was asleep)....after only those relatively few months, when he did go back to work, I had a complete breakdown--he went on a 2 week business trip and I think I slept for 8 or 9 straight days, getting up only to eat and shower. My hubby kept complaining to the kids that I wasn't doing anything for him (something he stands by to this day). He doesn't remember the 3 times a night blood sugar checks, the meds I tracked, the drain bulbs I cleaned out and measured...the diabetic diet he was on--not one person helped me as he was immunosuppressed and all the grandkids were walking URI's. It was just me. Now I say this to tell you that SLEEP is so important. You aren't getting enough and your body WILL crash and burn on you. Get some respite. Can you go to your church? Other family?
God WILL exalt you on high for the loving care you have given your mom!! You are going beyond the mark, IMHO. I hope you can get some help. and soon. You deserve and need a break.
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Lack of sleep can really do terrible things to your mind and body. Long term lack of sleep is especially harmful. I would explore what services are available to either have some outside help come to be with mom overnight, so you can sleep uninterrupted or explore resources for placement. You would be much better equipped to be there for mom if you are rested and in good health. Your temper will be even and you won't be overwhelmed. And you will be happier. Don't you think your mom wanted you to be happy? Don't beat yourself up for making one rude comment. You are sleep deprived. That's how they torture prisoners of war, you know.

I would research what she can afford, if she qualifies for Medicaid, etc. and any other resources. If you don't get support, you may not be able to care for her very long due to your own health failing.
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Actually, seems like I'm the most horrible daughter out there so it can't be you. My gut and heart are so wrenched with guilt, doing everything wrong or doing not enough after devoting
the last 11 years to helping her. The more I try, the worse it is for me... I can't even remember who I am anymore... Or remember the beautiful person I used to be... Life is so unfair at times... While it is so short... I guess there's a lot of beautiful good-hearted daughters, sons... that get under-appreciated and it sure plays havoc on us. I guess the question is how do we come out of it?...
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This is an article, linked below, that helped me see this much clearer.... that not everyone is cut out to be a caregiver.... whew.

https://www.agingcare.com/articles/not-everyone-cut-out-to-be-a-caregiver-162192.htm
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I am a practical sort of person. So I hope you won't feel that I am being insensitive to your situation. I have been there and it was ugly and I felt ugly. It is hard not to be disappointed in one's self.
Taking care of yourself is extremely important. If you reach burnout, then you will not be able to care for your loved one.
Here are my suggestions:
1. find a source of regular respite care. Pay someone or ask for help @ your church or your friends.
2. Do simple exercises during the day. Exercise will lift your spirits.
3, Cut back on the amount of caffiene, sugar and processed foods. These affect your energy and your mood. Drink more water.
4. Find a few minutes almost everyday to do something you love, whether it is knitting for 10 minutes or reading a book or emailing someone important.
5. Identify three ways to simplify your life. Wear the same clothes every other day. Serve the same meal every other day, with memory loss, it does not matter. Spending 15 minutes every day reducing the amount of clutter in the room(s) where you spend the most time. Just throw out stuff you don't use.
6. Find out if you can pay your bills on line. Then you won't worry if the payments are received on time.
7. Go through your checkbook to see if you can eliminate unnecessary expenses. If you can, then paying for respite care might be easier.
8. Get enough sleep, but not too much.
I hope these simplifying your life steps will help you. I suggested them because they free up your time and attention and brain power. They will give you a little more control over your life.
Do your best. Somedays that is all we can do.
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Your situation sounds identical to mine. (9years).
Of course God will forgive you. That isn't part of the equation. I too truly believe that "what goes around, comes around" and I think I will be in for some rough days in my senior years but I am hoping I also get good compassionate care just as I also have given on the "not so bad" days. When I wasn't too tired, I was able to ask members of my Church for extra prayer on my behalf because I was too tired to pray. Those that understood, stepped up as a Church family should, and carried me through the rough stuff. Sometimes God just wants us to stop trying to do it all alone. It's hard to ask for help in any manner because that guilt voice tries to convince you that you are failing if you have to ask. But, that is when God is able to do His best. Bed days and bad circumstances don't mean you have become a bad person. It just means you are tired. Time to acknowledge that. Just let go and let God bring strength and assistance, comfort and confidence.
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You are not a bad person. I too have said mean things to my Mother which I later regretted. Mother was always the leader in our household, the strong one, and to see her in her deteriorated state is just more than I can bear at times. I'm an only child, work a full time job, and do the laundry, house cleaning, grocery shopping, ect. I've had to bring Mom home after we've gone out to eat somewhere and put her right into the shower because she s--- herself. So don't be hard on yourself. There are definitely others who are having the same feelings as you. Hugs.
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Continuing with my NIH suggestion. What we need at this stage of the battle are interdisciplinary medical specialists to work with patients testing every conceivable protocol to actually offer some productive conclusions. X-ray, scans, MRI , medical history, medication history etc to achieve a complete physical examination of the patient who is now a book to be read and treated.
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To contain cost throw out the lobbyists and the current Congress. Hard battle to beat that big business bunch who only care for profit not people. This is an unfortunate situation when we look at the profit margins of nursing homes and the flagrant charges to Medicare (while staff is underpaid). CNA training is inadequate and their syllabus needs upgrading to allow this group to achieve more knowledge and responsibility to warrant a better hourly wage.
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You, like all of us here, are doing the best we can. God knows this too...more than you do! So don't judge yourself and talk badly to yourself you are not worthy of such self talk. You're a great, loving daughter at her wits end. I used to think I was very patient, but boy have I eaten humble pie and a lot of it.

My mom can sometimes get to me in such a way where I just want to run away for good. She can get into calling multiple times within a short period of time which over top of everything else can make me super stressed and upset. My temper and patience gets short and sometimes I do say something and then apologize. It happens when I've talked to her 5-10 times in a hour. A few times I've gone into the bathroom, turned on the fan and screamed as loud and long as my poor lungs could handle it!

We're not perfect and can't make a perfect life for our parents. We carry so much and can only do as much as we can. We have to relieve the constant stress and and pressure because our mind, body and spirit cannot live in this fashion. We have to recognize when we need help and get it. I did finally get in home care and thank God I did. It has saved my sanity. And it has helped my parents get care from an untired, unstressed and patient friend to enrich their lives. I fear if you don't, you'll just burn right out or worse.
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I will refresh my point about the NIH. I am not advocating what has been suggested but patient research. Each stage of AD has a forward movement as the brain function deteriorates. My proposal is that medical teams monitor patients to determine if there is some way to treat the patients to determine if any steps can be taken to contain the stage 3 development. Nothing to do with nursing homes but a Government sponsored research program under one roof. This has not been done and is urgent to try to get a handle on stopping the final process. An innovation anyone else have a better idea.
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I believe the main help we need from the government is help containing the cost of healthcare. The various facilities and medications cost more than a human can pay. Only insurance and government has that type of money. At the present time our copays are often as much as the total cost was about 20 years ago. Some people have repeatedly tried to address cost containment in the past 30 years, but it has been fought tooth and nail in Washington. I've wondered if it is because the healthcare lobbies throw a lot of money around in Washington.

Cost containment would have a strong, but temporary effect on the stock market. Seriously, though, I don't know how the US can continue on the path it is on when it comes to healthcare costs. Who could afford it? Not even the government.
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Normandy, I believe there is a Beacon HIll Village in Boston, a C apital Hill Village in D.C. and a start-up Cheverly Village in Cheverly, Maryland. They are 501(c)(3) organizations where caregivers are vetted, bonded, etc. Run like a co-op, the purpose is to help elderly stay in their homes. You might connect with them, especially the one in D.C. Neighbors help neighbors.
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I have suggested an Alzheimer's Village at the National Institute of Health here in the Wash DC area but I must be talking to a blank wall unable to respond proving they are not human. I had an elaborate plan which involved a floor for each stage of AD with constant medical teams studying patients collaborating with any semblance of medical treatment development possible to establish a direction for the world. It is frustrating that an innovative idea is not even acknowledged. Maybe it is far fetched but when we are fighting a black plague surely a barrel of ideas should be useful.
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just to let you know you all. You all great. you gave me a lot of support that I need. my mom with my brother now for 4 days. I still fee I am so tired and exhausted. I am trying to get rest as much as I can so I can take care of mom.
cmagnum, yes you are right. I and my brother should have realistic plan. I really need to have a plan to save myself, I feel I am going down to hell. if I can not recharge myself I can not help mom and myself.
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Hope, your situation needs more than a band-aid of your brother giving you a break which is good.

You two need to have a heart to heart talk about a new plan and what is realistically possible given the care needs of your mother. You may be looking at a situation where medicaid is needed and for her to get 24/7 care from people who work 8 hour shifts. Then, you'll need to inform your mother that you are very concerned about her safety and care which you are no longer able to do 24/7 like you have for the last 8 years for her dementia and other health problems are more than realistically one human being can do alone.
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