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When I try to take care of chores, mom starts screaming for me after only a few minutes. She's been living with us for 13 months. I am paying for sitters who do very little, just so I can have some peace. I am concerned for mom, because she truly thinks that no one is here. But I am also concerned that I'm spending money that may be needed later, just so I can get things done.

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Give her a dust cloth and ask her to "help" you. Maybe she needs that caregiver because your wrapped up in all you have to do. It has to be lonely when you discover you have dementia and im sure its scary. Put yourself in her shoes.
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lealonnie1 Dec 2020
How 'bout you put yourself in the OPs shoes, so you can try to see where SHE is coming from? Just a thought.
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Don’t leave them alone. If they need constant supervision make arrangements to have them taken care of.
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Yes, make him/her the POTUS‼️
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I highly recommend she see a Geriatric MD, and a Geriatric Psychiatrist. Both specialize in dementia and with medication that will help her cope better w/the disease which will help you live your life better too. I also recommend you have some simple activities for her to do, like stack cards/put them in order, can she fold towels, match socks, wash the dishes (maybe just the utensils and plastics), sort colored pasta in bowls, make balls with playdo, can she color, wrap yarn around a pencil, look at a magazine. If she’s not wheelchair bound then she will always need eyes on her because she is a fall risk. Also, your helpers should be engaging with her all day long.
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Imho, I see by your profile that your mom is 98 years old. Perhaps she gets frightened when she does not see you. Others have said that she could be with you when you're doing these chores. Prayers sent.
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Take mom in to the other rooms with you. Perhaps find some busy work for her - folding towels (even if she doesn't do it like you would do it). Maybe put a white board in her room where you leave her and put a note to remind her where you are (washing dishes in the kitchen, cleaning bathroom, laundry, etc)

Why are you paying sitters who do very little. You need to have a talk with them about doing more or find new sitters. Once you let people do nothing a couple of times, you are saying loud and clear it's acceptable. Employers usually create the bad employee. Rehire and have a list of things you want them to do while they are providing care for your mom. When those things are not happening, speak up immediately. Cell phones are the biggest time waster of employees these days - address that in your list of expectations - cell phones may be kept in their purse for emergencies, but not out in the open as biding time.
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Taarna's idea is one I like very much. There is a good deal of anxiety involved for many. In fact translate that to "stone cold fear" and confusion. Often medications help. It is sometimes a search of just what works and in what amount, so requires a good practioner and patience. Wishing you the very best. The time may be coming closer when in home care will be too difficult to continue for the sake of all. So sorry for all you are going through.
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Talk to her doctor. She may benefit from anti-anxiety medication. If you are home when there are sitters, it may be an unnecessary expense - except a sitter at night if mom is prone to wander.
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My husband would be nervous if he couldn’t see me (he’d forget I was mowing the lawn or something.) if I could find a movie or show he loved, he’d be entertained and wouldn’t worry about me. If not, I might just let him watch me until he got bored. He did carry a notebook that I updated everyday with what was happening and he would refer to that many times during the day. Best wishes.
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Try soft music. A TV show she loves. Even one from the past.

My Fair Lady? Dr.Zhivago? Look up the academy award winners from when she was young. Even if she doesn’t usually focus, she may muster up some focus for that.

My mom loved music from her era and became younger and sharper after listening to it.
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Sitters are very costly--about $20 an hour. If you are paying "under the table" you will not be able to provide proof to make them Medicaid eligible and Medicaid would see that as "gifting" which would be penalized. Also by hiring "under the table" these sitters can CLAIM to fall or get injured in your house and can sue her estate. That is a good enough reason to use legitimate agencies because sitters would be covered by Workman's Compensation and cannot sue her estate. Further, if the sitter is not interacting with your loved one, you can complain to the agency. Sitters *DO NOT* do hands-on care like toileting and bathing. You would have to hire a CNA which would cost a lot more an hour. All sitters do is sit and watch. They can read to your loved one and interact in other ways, but they do not do hands-on care.

Now my mom's Alzheimer's was extremely severe; however, she was only bedridden for 2-1/2 months because I kept her going and walking as long as I could. It got to the point she forgot how to stand, and could not focus on that and I ended up getting a feeding tube since I did not want her to die of dehydration. She did great with it until OTHER natural causes killed her not related to Alzheimer's. Still with insulin-dependent diabetes she lived to be 90, and I never had to give her any psychotropic drugs or narcotics. She only took a few meds (Lopressor, insulin 70/30, lactulose and multivitamin), and I had her on hospice for 2 years. I brushed mom's teeth and used chlorhexidine oral rinse by using swabs to keep her from getting aspiration pneumonia due to dirty teeth. ORAL CARE IS IMPORTANT even with tube feeding. The mouth has to be clean. They gave mum her diapers, cleaning materials, dressings, tube feedings, pump for tube feeding, and tubing and I used hospice like a home clinic with routine labs, urine tests, and whatever else I needed. For her feeding tube I used a simple tube-top I bought on Amazon. Mum never bothered with the feeding tube, but I had to protect it from getting accidently pulled while turning and cleaning her. The tube top on her abdomen worked like a charm, so I bought a few of them. Now that feeding tube took a *LOT* of care but I never had a problem with it.

Even during advanced stages once I hoyer lifted her back to her bed (I put her on her easy chair a few times a day), she had this look of fear in her eyes because somehow she knew she would be alone at night even though I slept in my bedrrom just one room away, so I got a nursing manikin which looks like an old woman. I got it a wig that looks just like mom's hair and dressed it up with mom's clothes and on a wheel chair I would put it next to her bed and she would look at it and fall asleep. I called it virtual company. I always kept her bedroom with subdued light. That way I can sleep at night, and mum would think someone is with her.

When mom died I felt destroyed, but I keep the manikin on her favorite chair to REMIND ME she is better off where she is. It looks just like her. Looking up at the ceiling, mouth opened--that's what the manikin does. Mom's ordeal of life is over, and she is at everlasting peace. Only the living are suffering and the price of love is grief. I came to terms with her loss, but the manikin is a source of comfort to remind me how she was before she died.
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bestafk Nov 2020
What a wonderful daughter,your Mom was truly blessed .and what imaginative solutions you developed.
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My husband would get separation anxiety when I left him to go to bed. I found that if I told him: I’m upstairs just around the corner. Everything is ok. We don’t have any problems. It’s ok to go to sleep. I locked up the house. And, I love you.
I didn’t say all those each time. He just needed to hear my reassuring voice.
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We've developed a process of posting signs where she can see them, because in our case it's not that she's afraid to be alone so much as worried about where we are and when we'll be back. So we post signs answering the question every time she sees it, for example, "We are upstairs working in our office."
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Sounds like the caregivers are not doing what they should be doing. They should be keeping your mom occupied while you are doing what you need to do.
And you should find things to do out side the house as well. Mom needs to know that she is taken care of when you are gone, out of the house. With you in the house she knows she can rely on you.
The caregivers should be doing things with mom. Reading to her, listening to music, art project, puzzles, folding towels, sorting socks, rolling out cookie dough, whatever mom can do they should encourage it.
By the way the paying of the caregivers should be paid for by your mom not by you. As her finds dwindle you can start the process of applying for Medicaid. the proof of payment for caregivers needs to be documented and kept so that there is no question that her funds were used appropriately.
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Or, possibly?, spending money just so that you don't completely lose your mind..?

This may be a phase that gradually passes, too, you know; and you will be able to be out of direct sight without your mother becoming afraid.

Or, can you do chores and jobs within sight of your mother, either by keeping her with you in a wheelchair or bringing (say) the paperwork into the living room? I don't recommend this approach, though, because (see above) I know it would drive me potty if it were me.
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RosaVista Jan 2021
You hit the nail on the head. Sitters = Sanity. She's not mobile enough to take her to the garden and her quarters are on a different level. I've tried to pay bills or read a book while sitting with her, but she talks consistently or has the TV turned up. She wears hearing aids and I take mine off. LOL. I have been blessed with finding sitters in my small community. The first two are recovering from Covid. God only knows how we dodged the bullet. The 3rd was a CNA but very young. She canceled multiple times due to her personal life. So we agreed that she needed to look for another position. Mom never did like her. Mom took to sitter #4 immediately. All the sitters take care of mom's hygiene and light housework. Mom has a cell phone to call me at night. Occasionally, she'll start calling me in the wee hours of the morning. Most of the time, she sleeps from 11pm to 7am. Her sleep has always been sporadic. But she'll also call during the day if the sitter is making her lunch etc. I've pretty much gotten adjusted as best as anyone could. I could save money if mom could be alone if only for a couple of hours. I think she would be happier if she didn't feel abandoned. Several doctors refused to give her any medication, but I'll take her to different kind of Dr.
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Its part of the Dementia. You can't reason with this. You could tell her over and over that you are just in the other room, she does not understand it. This is the part I never got used to, the neediness. I can't stand turning around and there is someone right behind me. Even an animal. As suggested, ask her Dr if something can be given.
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RosaVista Jan 2021
Dementia is so strange. Mom asks daily whose house this is and where do I live. Yet she talks about Covid and eliminating cars that run on gasoline because of global warming. All bets are off when she gets a UTI. Dec. 26 was the last one and we had to go to ER. Wanted to call the Painters Union to see if they knew if her dad was alive. Wanted to know where my two brothers were. They died in 2007 and 2013. She cried all day and called several people to tell them that they had died. So hard to accept a situation that makes no sense at all.
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When my husband first became completely bedridden and was in a hospital bed in our living room, he used to call out my name a lot. I think he just wanted reassurance that I was still there, which of course I always gave him. I also had a security camera on the mantel of our fireplace, so I could check in on him anytime I wanted to, whether I was home or not. Mine just has where you can here what's going on in the room where the camera is, but they now make them with 2 way talk, so if you're out running a chore and you check in on your camera, and you hear mom calling for you, you can respond to her and hopefully that will be enough to calm her down, I wish you the best. I know that it can be hard to get things done when you have someone calling your name all the time.
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sudalu Nov 2020
I was going to suggest a baby monitor, but I don't know if there are any with a two-way talk feature. The security camera should work well.
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We found that the best treatment for mom's anxiety was meds as prescribed by a geriatric psychiatrist.
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RosaVista Jan 2021
I have scheduled an appointment with her neuopsychologist. Thx!
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