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My whine moment is I got gas in my care this morning so I could run errands, visit with my mom and go check on my sister who was hospitalized with pneumonia over the weekend.....after I got to my sis's house, 40 minute drive, my key would not come out of the ignition switch. Car repairs suck....
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Assa youre mums quite a character! they are sneaky though! last week not that i mind mum knocked over my skin toner (dont have much money so was annoyed but didnt show it) when i asked if shed seen it she started to laugh and that shed knocked it over that she would buy me a new one! THEN she said "i didnt think you would have noticed and i was going to fill it with water" i said well its yellow toner so i think i would have noticed? her reply i kid you not......."not if i peed in it". dont worry am keeping an eye on all my stuff from now on!!
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HA! HA! looloo my mum was too! she used to clean the kitchen over and over when she was angry pre dementia. Liked to cause drama and crap just to get attention i went through h*ll with her and family a few years ago before we got diagnosis but i knew something was wrong as her moods were almost violent and shed tell family it was me and the stress i was causing her? my siblings even kicked me out one xmas. May i just add "the best xmas ive spent" no siblings and no mum to worry about it was bliss! but a horrible thing for them to do still to this day no apology?
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Tex big big hug! theres nothing worse than caregiving when youre in pain i just hope your husband copes and realises how much help you will need when you come out can you not get mum some respite when you come home? Best of luck feel so sorry for you as i have slipped discs in neck and back but not bad enough for surgery thankgod but stress is the worst thing for this i just hope can get a break when youre out!
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My whine for the day is grocery shopping for my parents. I find it somewhat amusing that if a product that my Mom likes all the sudden the manufacturer changes the design and color of the box or package, Mom doesn't like the product, it doesn't taste right.... but, Mom, it's the same product inside, only the packaging had changed.

I ran into the same problem when I bought Mom organic bananas instead of regular bananas, I thought she would enjoy trying them as I think they taste better. Mom doesn't like the word *organic* and makes a face whenever I say it. I tried to convince her that organic is how her Mother use to cook for the family.

Sigh... guess old habits are hard to change.
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Susan my Mom does sneaky stuff to when not wanting to shower.. I'll ask her to shower then she just sits there and keeps peaking over at me hoping I'll get up and if I get up and walk out of the room she'll rush to her room and get dressed. When I say "you were suppose to shower", she'll say "well not now, I'm already dressed"! .

It's a vicious circle...
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Tex, keep us posted on your surgery. We're all pulling for you and hoping for the best result possible!

Is it permissable to post a 2nd whine of the day? This day just isn't going well at all. I'm trying to work, dealing with torrential downpours and thunderstorms that threaten to knock my power (and thus my internet) out at any moment, had to run the van to the shop for work to be done prior to our travel, PLUS....we have to attend a birthday party for family members tonight...on a weeknight...in the middle of the week...at 5pm. Are you kidding?

So, yes, my stress level is more than a little high today. I have to get all the day's work done before 4pm, take care of the van (done), and get Mom ready for the party. Thank God I have a small gift stash that I could pull from for the birthday gifts, or they'd be getting nothing.

Told Mom she needed to shower today. She hasn't been able to get in and out of the tub without help, and today, she's resisting showering. I go to pick up the van from the shop, and return to find her with her hair wet and combed back, saying, "I showered while you were gone!". Hm. Really? I was gone all of about 30 minutes - and considering that she can't get in and out of the tub without help, I'm immediately suspicious that she didn't shower at all...so I go into detective mode and start asking questions and looking around. "Mom, are you sure you showered and didn't just wash up at the sink?" - "Yes, I showered." - "Mom, if you showered, why aren't there more towels or any washcloths in the hamper?" - "I used washcloths, they're in the bottom of the hamper!" (no, they're not - her underwear and a single towel are in there, and she's a creature of habit - if she showered, there would be 2 towels and a washcloth in there.) So I check the tub - nearly dry - and the bathroom doesn't "smell" like she showered.

I'm so frustrated right now.....so now I have to tell her she absolutely cannot shower when I'm gone, and approach it from a safety aspect - not safe for her to do it when I'm gone - rather than approach it from the angry standpoint I'm at right now - that she didn't feel like showering, so to get me off her back, she wet her hair down, dried it on the towel and combed it, and took her underwear off and put them in the hamper, to make it look like she showered.
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Kazzaa, I think you're onto something. I do think it's more draining and personally unfulfilling for them to behave, be courteous, etc. And that they'd rather use their energy to gain attention, to stimulate themselves, to feel powerful for moment, by being rude. I can feel my mother's energy level drop after having to be civil, but it seems to increase when she's moody and hurtful. But, then again, she's always been that way.
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My whine today is I officially have 2 bulging discs in my neck with bone spurs and am scheduled for surgery July 3. Would have done it sooner but mom has to many MD appts and a steroid injection procedure before then. Trying to get her tuned up for my husband before I have my surgery,.wish me luck.
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JB mum is same cant stand 1.....anyone getting your attention and 2 she will have to behave and be normal! I know i go through it everytime but i dont think its malicious just tiring for them to be nice to people easier and less draining to be nasty and "away with the fairies" very irish saying!
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Mums out gardening as we speak? miracle as she didnt spend one minute last year? I know its not funny but it is and if we didnt laugh wed cry. she came into the garden dressed properly with a long skirt and tshirt i was well impressed as usually she comes out in PJs anyway she was walking towards the tree and her diaper just fell down onto the grass!! lucky our neighbours cant see into the garden. Why oh WHY do they not wear pants?
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My friend is more like the good witch -- is it of the East? Mom is a hermit -- always has been. The stress of having someone come in for an hour or two is terrible to her.
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??? Jessie, what's your mother's problem with your friend? You haven't gone and invited the Wicked Witch of the West or something...?
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daughter52, that would be awful to hear her thoughts about you. Even when we know there is dementia, we still search for some gratitude or simple courtesy. I don't think that part of us looking for normal fades, even after years of being around dementia.

I got a new whine today. I have a friend coming to visit tomorrow. I told my mother and she got mad. Why is she coming here? Mom is most unhappy now and giving me the stony treatment. Sigh.
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CM - "away with the fairies" - I like that one. I'll have to remember that for future use! That could have applied to my dad in his last weeks, when his toxin levels were skyrocketing between dialysis treatments. He would see little Santa Clauses running around on the floor (don't step on them!), birds flying around the ceiling (and he would whistle bird calls at them), and eat imaginary items sitting in front of him on an imaginary tray with an imaginary spoon - and even act like he'd spilled some! He was also insistent that he had walked into the nursing home under his own steam (scary, since he'd not walked in months, worried he'd try it) and that he was able to walk out of the nursing home and drive home. We had to keep telling him gently that he needed to stay where he was and get better/stronger - even though we knew he would never come home again.

I know what you mean with the worry that someone will think you are making things up or making it seem worse than it is. I deal with that with one of my siblings. She's out of state 90% of the time, comes home every other month or so for a few days, and spends about 30 minutes with Mom when she's here. She sees nothing wrong with Mom at all - but she's not here when Mom leaves urine puddles on the floor, waste on the toilet seat or bath seat, needs help to get in and out of the tub, to walk, even to cover herself up in bed, because she can't reach behind herself to get the blanket.
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Susan, I sympathise about the remote. God it's annoying. My mother was making the most amazing hashes of trying to change channel - trying to find out where she'd got to so that you could put it right was a bit like solving Rubik's Cube, especially with these new set ups so that every tv seems to have about seventeen different remotes that need pressing in the right order, digiboxes and flat screens and all that nause… and often the first I'd know about her wanting to watch something different would be when the volume shot to max and the entire neighbourhood was being rocked on its foundations. Anyway. The thing is, it'll get worse. I agree about the encouraging her to shift for herself as far as reasonable, for the sake of not letting her vegetate; and I know it's important to avoid 'learned helplessness'; but there comes a point when you just have to think "ok, that piece of brain territory is gone for good - give up and work on cultivating the others."

Mother was confidently telling the community dementia nurse yesterday that she could make telephone calls, look up contact details in her address book, manage the tv and her computer and was going to retake her driving test 'as soon as I'm a bit better.' I felt like a cruel robot sitting there saying "No, she can't. No. No. No. No…" The sad thing is that it's not that long since it was yes, she could. And the other sad thing is that I was kind of glad that she was so away with the fairies while the nurse was actually watching - you know that uncomfortable feeling that people might think you're making up melodramas and claiming your mother's worse than she really is?
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I have been debating on whether or not to even 'whine' about this. It's not like it's a new thing but her behavior last night just threw me into taking a long walk---and I never walk at night. I'm speaking about my mother and her vascular dementia/alzheimers. I still ask myself whether it's her personality, the disease, or both.
My mother talks out loud when no one is in the room. It is not uncommon, I know. But---how can I describe it---she says out loud what she is thinking and it is not always nice. Mostly I notice the things she says about me when she thinks I cannot hear.
Last night, after a reasonably good day for her with an outing and a visit to her sister, I fix her dinner and her meds and get ready for an evening--a moment-- of peace and reading my new book. All of a sudden I hear her get up from her room and begin (outside my door) singing loudly and complaining loudly (like muttering) about me and how selfish I am and how nobody cares and on an on..
This went on for a few minutes. I became surprised at the behavior out of the blue and was upset. Should I disturb her rant? Does she even realize I hear her? So I go for a long walk to get away from it. Now it's morning and she's not up yet. I wonder if she'll even remember. It upsets me though when I am doing all I can and she still thinks nasty thoughts about me.
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Its too early to whine, but I have an observation mixed in with a whine. We have 2 caregivers. They are like night and day. Today our weekend caregiver is filling in for our weekday caregiver. She comes inside the house so quietly. She does what she has to do and that's all...no drama. This is how it should be every day and I think my siblings assume its the way things go. Wrong. Our usual HHA comes in with drama on an almost daily basis. She tries to run the show and walk all over me as if she has authority. Its frustrating because I know Im not making up the things I witness on a daily basis. When my sister is around she acts in a professional manner. Its very frustrating when you know what really goes on, but no one cares as long as it doesnt effect them directly.
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Assandache...same here.....but today is going to be anWithother one of those days. I used to wonder why I can never get anything done. This morning was another reminder of why I can't. With her state of mind, I know she can't help it, but it is almost like she thinks it is funny to refuse to eat, delay finishing her meals and I cannot proceed with anything until I have her taken care of at least for a couple of hours. I always have to "peep in" on her every little bit on top of that...but this morning she has already started her stand up comedy routine of not eating and while she thinks it is funny I can tell you I am not laughing. She will not finish her meal, so I am putting the rest of it in the fridge and will come back later....she seems to be aware of an awful lot not to know she is messing me up....on mornings like this I am ashamed to admit how sick I am of this.......I have already lost it...time for me to get out in the yard and work off some steam.
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Whine for today - actually happened last night. Mom goes through phases of being semi-independent, but only after I get on her case about not moving and being too sedentary. She is fully capable of walking and doing things for herself, but refuses to do so unless I'm not there to do it for her or until we have a serious discussion about it - which happens just about every other week. She is a fall risk, so I don't expect her to get up and dance a jig or run a mile, but it would be better for her if she kept moving to some extent - she just chooses not to.

So we have our nightly routine. She sits in her chair like queen bee while I, the worker bee, buzz around getting ready for the night - shutting down the computer, locking the doors, shutting windows, putting cat away for the night, etc. I usually hand her the tv remote, get her water cup filled, etc - hoping to minimize any risk of fall during the night, since she only sleeps about an hour or two at a time and then is back up. I keep the tv remote with me during the day, because despite my best efforts to simplify the process, she inevitably screws up the tv and can't get it to turn on or change channels - easy to fix for me, but frustrating to her.

For the past week, I've been getting ready for some upcoming travel and also for some work to be done on the house - so I'm meeting myself coming and going, and my own memory is starting to show the strain. I forgot to give her the remote before I went to my room for the night and got into bed. Now, she knows I sit at my desk ALL DAY working, and that's where the remote is - always. If I forget to give it to her, all she has to do is get up, take 4 steps to my desk to get the remote and 4 steps back to her chair. What does she do last night, after I've gotten ready for bed, climbed in, breathed a sigh of relief that the day was finally over and started to relax in the only room in the house where I can be alone? "WHERE'S THE REMOTE???" "ARE YOU COMING BACK OUT HERE??" "I'M MISSING THE REMOTE!"

Someone needs to buy me a new bedroom door. I think I just about yanked mine off the hinges when I went back out to retrieve the precious remote that was sitting not 10 feet away from her and deliver it to her hands.
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Every morning when I awake before Mom I say to myself "I wonder if she died during the night"?

Can't help thinking that way.. At 92 it's inevitable...
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Veronica, how true that is about worrying about *what may happen*. I've been doing that for over 5 years now and the what ifs so far haven't happened.... yet I lost thousands of hours of sleep worrying about it and ruined my health in the mean time.

How I wish my parents would move from their single family house into a retirement community where they can have a large condo and enjoy everything the place has to offer. Plus they would have more freedom instead of trying to rely on me. My Dad liked the brochure but said maybe in a couple of years they will move.... HELLO... you are 92 and 96.... [sigh]
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How much time do all caregivers spend worrying about what may happen and how much dealing with actual catastrophies. i know it's hard but can you put the what if up on a very high shelf and replace them with plans for feared events.I am not going to write every suggestion but here is one. If grandpa sits so long on the toilet trying to poop that his nerves get pinched so he can't get up. What should you do/ of course 911 is an option but you don't need aan ambulance with sirens blasting and scaring the old man out of his wits. What you need is to have at hand the the NON emergency number for the fire dept. Tell them what has happened and ask for a couple of strong men to come and help grandpa back to bed. if you have volunteer EMTs in your area they all listen to their scanners and you will probably find a couple of neighbor volunteers on the doorstep in no time at all. Most elders continue to do as they please whether they are aware of the risks or not it is the nature of human beings.
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My problem of the day is that my 80 yr old MIL continues to do as she pleases, make unsafe decisions, poor judgment, not following safety routines we have gone over and over, not drinking her fluids and getting dehydrated. She told me off today and said she is doing the best she can even if I don;t think she is. Besides stopping me in my tracks she has made me think! We know that her brain matter is shrinking, her short term memory is going, and she doesn't think things through anymore. So while I am getting frustrated and scared and worried and upset about her doing things in an unsafe manner, maybe what I need to realize is that she is incapable of doing things safely anymore, she cannot use good judgement anymore, she is not able to make good decisions anymore, and she really cannot remember the things I tell her over and over and over and over. As a result I am the only one who is getting stressed out and she is just blindly moving through life without a care in the world. She has fallen so many times, once resulting in a broken hip that set her back a year. The other times she has been lucky. She has been dehydrated too many times and she feels lousy, lethargic, achy, etc. She went out for a walk last week with the part time caregiver and collapsed when she got back in the door. The caregiver had to call the fire dept to help with a life assist. They must know us by heart now! I worry they are gonna take her from us. I try to tell her that and that we want her to stay home and not be placed in a home. But she continues to do as she pleases. Her son and I take turns with her care when we are home. I don't know if I can do it anymore.
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Funny how these things bring out the writer in us. That was very nicely written, Hope.

I can't tell you how many times I have come out and found the house so absolutely silent and still that I was certain she was gone - passed in her sleep. In fear, I would call to her, and after 3 or 4 times - by which time I was in an all-out panic - she would suddenly jerk awake and answer me. Not sure what frightened me more - the silence or the awakening!
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LOL....one can only imagine what she is up to....

I do the same exact thing, listening all night long to be sure she is breathing...and at times you can't hear her and then she will take a deep breath and back to normal...and like you said, a deep sigh of relief and all is well ....early in the am, before it gets daylight, it seems I always wake up and I will check on her...she is always looking quite comfortable, breathing normally and soundly sleeping....I go back to bed for another hour or so and you can hear the sound of turtle doves, sometimes a whipporwil.....spelling???.....and it is the most peaceful and glorious feeling.
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I know exactly what you mean, Hope22 - when those really bad days come (more often lately than before), I keep thinking to myself, "and I have to do this for HOW MANY MORE YEARS?!?"...but then, in the quiet moments before I go to sleep, when there's no sound in the house, I find myself being worried about her - is she breathing? why don't I hear her snoring? oh wait...there's her familiar, shuffling gait headed to the bathroom, so all is well. Sigh of relief.

I picture myself curled up in a ball, sobbing, once she's gone. Sadly, I suspect that image is all too close to the truth. Our relationships with our parents are complicated things - sometimes more than we'd like to admit.

Oh my...she's flushing the toilet repeatedly in the bathroom....I better go see what the heck that's about.....
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SusanA....I have had that harsh realization as well and for me it is so horrible to think that I won't get a real break until my Mom is gone..and, like you, I am not rushing that day. For me I can't even bear to think of losing Mama, she is truly the last person remaining on this earth who I feel loves me, ...so sometimes I just close my eyes and dream of doing fun things and just keep in mind the day will come, even though it is going to be incredibly sad when it does...What a horrible place to be, in the middle of knowing it's coming, not wanting it to come, knowing you can't stop it....and dreading it all the same...and knowing when it does, ...well, for me, the incredible emptiness may be more than I can bear.....
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Well, I came to the harsh realization today that I will probably never, ever get another break or vacation to call my own, until Mom is gone. Not that I'm rushing that day to come, of course, but it's a harsh truth of caregiving. I know there are *many* more here that are in that same boat, and having "alone time" is a major luxury - but I thought I might have at least ONE more year where I could take a vacation to see my son by myself - just one. Had to finally have a long talk with myself (yes, I talk to myself - don't you? LOL) and come to the point of understanding that Mom is no longer safe staying alone.

Sooo....I've had to cancel the rental I had already paid for, which was incredibly cheap at $470 a week (cheaper than a hotel, and it was a whole house!), and start looking for something else that is: a) at least somewhat handicap accessible, with no stairs or steps and a shower instead of a tub; b) allows dogs and c) has wifi so I can work at night (the only way I can afford to pay for the trips we're taking this summer, since they all come out of my pocket - Mom's income doesn't allow for any extras). I think I finally found one, which is even nicer than the previous rental...but it's also nearly twice the price, at $850 a week. (sigh) Waiting to hear back from the owners to make sure we can get it reserved.
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My big huge whine. I got a loan off a debt collector huge interest but i need a proper hoilday. anywhoo booked my holiday to Seville in Spain for a wk booked it with mums credit card as i dont have one was so excited last night even googled tapas bars and what to see and do when just this evening i got an email to say there was a problem with the card????? have spent all night trying to call someone but they are all useless. You see mum has the money on her card but her bank have some stupid system of authorization crap so i have to get her bank to authorizise this payment? also the banks fraud called last night with that stupid message service so you cant talk to anyone "suspicious activity on your card"??????? they ask for dob then your age but theres noone to talk to and tell them that its a legit transaction? if i dont book this flight soon i miss the whole deal AND mum will be charged for the hotel if i dont show? YEH A CRAPPY DAY. just hope i can sort this mess.
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