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Why can't I be by myself? Well Mom, you can't walk, you can't cook, you can't drive, you can't go to the bathroom by yourself, you can't be in control of your medications, I could go on and on. I told her I also hate the fact that she NEEDS someone with her 24/7 but her choices are to deal with it or go to a nursing home. Her morning caregiver told me today that Mom is mad at her because caregiver won't take her shopping every day. The weather has not been good here (lots of rain) but Mom doesn't care. She says she is sick and tired of being in the house all the time (I get that) but you can't get her to understand that taking her out can be difficult. I took her to get flowers and groceries on Sunday and it completely wore her out.

Isn't this fun? LOL!!

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Thank you Sandwich42, freqflyer, GardenArtist, for great tips and support. Today was a better day! I have both parents and the big family home to maintain and keep the family business going, so some days are hard. My dream would be for them to be in a nice facility where mom could get hot meals (dad's been on a feeding tube for 3 years) and they would be less isolated. Also, I drag supplies up and keep the home in good repair along with all the Dr appointments. Sis and I sit vigil at the hospital for dads frequent pneumonia bouts. I long for freedom from the burdens and worry of their daily care. I love hearing how you cope and knowing I'm not alone. I got long term care insurance for myself and told my son, who just graduated college and got a job, to put me in a nice place with good care so I won't be a burden.
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YogoGirl, Garden Artist is so right about " sometimes you just have to feign exhaustion to avoid all the chauffeuring." At the beginning I never had set boundaries when it came to driving my parents all over hill and dale. And when I did, it made for some stressful telephone conversations with them. Yikes, I am a senior chauffeuring older seniors.... what is wrong with this picture!!

I did one better to feign exhaustion to avoid the chauffeuring.... I fell and broke my shoulder and am grounded from driving for 2 months... I plan to soak this injury for as long as I can because I was getting to a point where I was hating to drive, thus getting panicky. Not good :(
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Yogagirl - bless your heart.

It took me a while to get it, but there came a day when I had to overrule what mom wanted, just like she overruled me as an unreasonable child. My mom would have had me quit my job and family to be on 24/7 call for her every whim. Her brain did not recognize anything outside of her own desires - just like a very small child. She pitched temper tantrums when she didn't get her way also like a very small child.

With dementia, you are going to have to constantly reiterate the boundaries as if it's the very first time and there's no way around it. Reiterate verbally and also through actions. Sometimes I was too tired to even talk about what she wanted, and why it couldn't happen. It just didn't happen.

Through many painful episodes I learned that the less detail I gave mom, the better. Almost like how I managed outraged small children, sad to say.

On our drive from NC to MN, the first leg had us scheduled to stop for the night just over the KY/IL border. Mom refused to stay at every hotel I pulled into. They all looked "bad". Even the brand new Holiday Inns & LaQuintas. I kept driving like a nut because I didn't know better. I was so exhausted, I was white-knuckling it. Coincidentally it was homecoming weekend in Bloomington IL, so everything in a 25 mile radius was booked so I *had* to keep driving.

Eventually I pulled into the next Holiday Inn Express I found, went in, booked a room, and came back out to tell mom what was happening - not to ask - . Of course, that was the worst night of sleep I ever had, even with sick infants, because of all her body noises. It was unreal. The next day's driving was excruciating. I woke up mad and stayed mad.

I decided that since I was driving, so I got to call the shots. I stopped when I was tired. We stayed where I was paying - she never offered. I booked two rooms the second night, and of course mom didn't like it one bit, but I was next door. I told her to go to sleep and nothing would happen. I could hear her snoring through the wall. But, I did get rest and could finish the rest of the drive like a sane person.
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Yogagirl, sometimes you just have to feign exhaustion to avoid all the chauffeuring. "Oh, I'm so sorry, Mom, I'm so tired from driving that I just can't even get out of bed!"

You can also establish limits to how much you drive - it took me awhile to be firm but eventually I felt less guilty about not being available all the time.

There's a legitimate justification to limiting the driving - if you get too tired, or exhausted, you might have an accident.

I'm still working on getting agreement to use the various forms of senior transportation in the area. That's a tougher issue.

There's a senior service through the tri-county transit authority that will take seniors to anyplace within a 10 mile radius from their home for only $1.00 one way. Can't beat that. I'll have to use it for myself when I get cataract surgery!
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Sandwich and GardenArtist, so true. My mom is similar to what you describe, but she was never easy. Always perfectly groomed, season tix to her concerts, but cheap when it comes to dads nurses or driving help. My sis and I are sharing the cost of her maid, but mom refuses to get in the car her and manipulates me to drive and do errands to the point of exhaustion. Thank you for sharing! It feels good to vent today.
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Nikki999 - I'll take Ruby for myself if your mom doesn't want her! She sounds like a real saint.

There's a dementia educator named Teepa Snow who teaches in her seminars that wanting to "go home" is really wanting to go back to a time when things were good. It shouldn't be taken literally. It's just wishful thinking and talking.

Before my mom declined to the point she's at now, she would loudly threaten to call a taxi and fly back "home" or catch a bus. She'd throw some Academy Award winning tantrums over it. My mother had never used a taxi in her life, nor had she ever used a bus since the last day of high school in the 1950s. I just told her she had to stay put until the doctor said it was OK to travel (which was never going to happen). It wasn't me saying "no" to her then. I'd say "I'm sorry this is so hard for you mom."

The complaining can also come from depression and boredom. I'd talk to her doctor about it and see if there is a day program she can attend a couple days a week. Ruby might like the break! :-D
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I'm going through the exact same thing. My mother is currently in rehab for a few more days until she will come home (her house with 24/7 live-in WONDERFUL aide) - she doesn't want her because she "smokes outside"... well come on... God... This woman does everything for mom - continental breakfast every morning, lunch, coffee, dinner, dessert, takes her out for ice cream all the time, shopping, etc. and mom says she wants to move out of state to go "home"... well nobody is up there anymore they all died... dad died in 2009... she talks about buying a car and driving herself... she says the lady is only living with her because she has nowhere to go and tells her she doesn't need her... Ruby (the aid's name) just slips into the other room until mom's behavior passes... but wow.. my mother has it MADE compared to so many people and all she does is complain. I'm so sick of it. :(
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Sandwich, you described it better than I did in addressing the ability of a brain to absorb and process new information. I think sometimes caregivers feel the same way, at least I do, but in those cases i think it's being overwhelmed.
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My husband & I are in our mid forties now. We talk all the time about how we do not want to lose our ability to adapt and respond to our changing conditions.

It's a sad state when you get to the point you need the most help, you are least able to know it and be agreeable.

Garden, what you say is true. I think it's because the brain can't take in new information and process it to come up with new information like it could before. Fear replaces information. The brain is no longer plastic.

Or in other words, "Set In Their Ways". :-D A much nicer sounding description.
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We had a discussion, during the caregiving course I took, on the aspect of elders not wanting strangers in their house, and preferring that caregiving, housecleaning, repair and other tasks be done by their family, friends or church members - people they recognized, knew and with whom they were comfortable.

What we wondered was if some level of discomfort arose from a combination of factors: fear of being too vulnerable, vulnerability due to mobility problems, declining eyesight and hearing, fear of not understanding or being able to keep up with a conversation, discomfort with new people...

What some of us thought was that there's a combination of factors that predisposes older folks to stick with the known and avoid the unknown, in part because they don't feel comfortable dealing with the unknown at this vulernable stage of their lives.

That might also be an explanation why some are adamant that they don't want to go to doctors' offices, and especially doctors they don't know. The "new experience" is too unsettling for them.
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My mom's dementia and psychosis played heavily in her denial and offers for help. She would not let anybody but just a couple family members in her house because she was so suspicious and paranoid.

In the 1980s, Mom used to be neat as a pin, never left the house without every hair in place, makeup perfect, and a fully coordinated outfit. This was her "baseline". The house was always clean and ready for company. She was from the age where she wanted my dad to be proud to take her out and about. Dad died in 1986.

Fast forward twenty years. Mom had lived alone ever since dad passed. And gotten progressively more and more reclusive, weird, and mean. It was a combination of untreated mental illness, depression, and the dementia coming on.

Skip to 2012. Mom was hallucinating that I was in the house, that animals were in there, dead relatives came by, and more. We moved her in 2013 and found her in a filthy hoarder house. She could no longer keep up with dish washing, safe food handling, laundry, basic housekeeping, and definitely not the exterior tasks you have to do when you live in a house. She had piles & piles of used Depends in her bedroom & bathroom. The house smelled like a dead body.

We moved her out. She didn't have a choice. I don't think she even comprehended it until we were driving away to start a road trip of 1800 miles.

You can bring in outside help to assist a dementia patient living at home, but be prepared for all kinds of allegations of theft, impostors, lies, and danger. You will not be able to know what is true or false. Dementia patients can lose their own belongings and blame it on the next person they see. They might see the housekeeper pick up her own purse and walk out, and think she left with their purse. My mom accused staff at the nursing home of stealing her food, after she had eaten her own meal. She also believed they were drinking her pop, when she herself had drunk it and we could count cans in the trash can to prove it. It didn't matter. The paranoia is part of the brain changes.
Until very recently, she would say they stole her tooth and hair brushes, when they are right there in the drawer. Mom just could not recognize the objects anymore. Mom's file has a note on it that she "makes allegations", so staff have a certain way of handling her and behaving while in her space.

Nobody wants to go into long term care, but sometimes it has to happen for very good reasons. There came a day when it was dangerous for my mom to live on her own, and she needed to be in a place where her changing situation would not be a problem.

I am thankful every single day that I was able to find such a place for mom to go, and probably don't want to know what could have happened otherwise.

My mom was near hysterical about moving her precious, precious jewelry hidden away under her bed. I was lectured for hours about how it had to be stored in a safe. It ended up being a bunch of costume jewelry you could sell for fifty cents at a yard sale. Maybe.
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This is so common with old people. My mom remembers that 30 years ago she hired a local gal to help in my grandmas house and she stole 50 bucks she found somewhere. So of course, anytime I try to get any in home help, "Oh no! Those people steal you blind!" In the not too far future my mom will either go in a care facility or have in home help. No matter how much kicking,crying and screaming she will choose one or the other. After 50 years of moms depression, crying and generally being pitiful, I'm totally immune to it.
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savinggranny, some time we need to use tough love. Sounds like your Mom is still of clear mind but is in denial of her physical condition. This might be hard to do, but let her be home alone for a day or two unless you think something earth shattering might happen. Then and maybe then she will have an "oh" moment.

My parents need someone to come in to clean their house, so a few years ago I offered a cleaning service to Mom... oh my gosh, she was so offended plus she didn't want strangers in the house. Since then I haven't offered any cleaning help, not even myself. I will wait until Mom asks for recommendations for a cleaning service.
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Well, mother is in the NH, but prior to that, she didn't want people in the house, either. So, she wants to go by the house. I told her I cannot transport her. She cannot stand. I told her, "there is the phone. There is the nurses station, hire senior transport where ever you want to go." Of course, she will not.

I am tempted to wheel her outside and let her sit there, while I honk the horn. :)
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