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That dreaded "thunking" sound. You know, the one you hear when someone hits the carpet? Why she has such a hard time sitting is just BEYOND me. I can sit her in her chair and she's up shuffling around in 2 minutes. This is fall #2 this week. Thankfully she hasn't broken anything. I would love to put some double sided velcro tape on her. One for the bottom of the chair and one for her butt!!

It's so pretty out... I am not going to sit in this house all day. Gonna take my chances and go for a long ride, hopefully stopping somewhere and having a nice late lunch/early dinner. Gotta get her home before the sun sets :O yeegads!
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Jessie....Mama had such a good week and then all of a sudden just turned totally zombielike again...it does not follow a pattern...no time frame, nothing predictable...again, the ups and downs on the old emotional roller coaster are what does me in. I think I can deal with all the rest of it, but the emotional aspect is what is going to be the end of me...it is mind numbing
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I knew it couldn't last. My mother's good days wore off, but at least we had some good weeks. Today I tried spending time with her, but couldn't pull it off. She kept saying the same things over and over. That wasn't too bad, but she said "huh?" after everything I said. She said she heard what I said and doesn't know why she keeps saying huh. She's trying, but I can only go for a few minutes at a time. I feel so bad, because after a few minutes I feel like tearing my hair out. Wish I had a bottomless well of patience, instead of a splash puddle.
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My parents are obsessed with their Medicare statements and supplemental insurance statements. Mom even know what days she should be watching for the statements to arrive. Hope they won't ask me to help out sorting that stuff out.... heck when my Medicare and Supplemental insurance statements come in, I don't even open them, they go into a folder in the filing cabinet. My sig other does the same thing. Funny, both our college majors were in accounting.... guess we seen enough numbers in our life time :)
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Thanks for the tip Susan! There where a few times when mom's feet had swelled so bad that I thought she would lose her feet!! The deep red ring those elastics left where awful ! Before I put the monitor in her room she would get up at night, get lost and stand there for who knows how long... hours probably. This made her feet swell up...

She's not so much fixated on the chair... she can never EVER find it, or see it, not even with the big green neon sign? Her eyesight is just fine... it's just drives me nuts when she starts this up every single night. Weird how today she's been just fine.. seriously, daylight n dark. Not complaining just noticing. She even ate her entire dinner by herself!!??

Glad you're a "Happy Cappy" there Cap'n! It's been COLD here for days...in the 20's cold :/

Bless those of you deal with all that medical insurance paperwork stuff! Luckily, that is one thing I don't really have a problem with. Her insurance pretty much covers it all and I set every bill of hers up on direct pay. I'd be bonkers trying to deal with her and paperwork.

hope honey, I feel ya on this vicious cycle. I just pray we make it through this a whole person, not a mental blob who doesn't care to speak to people anymore. Yup. I'd be just fine in a shack by the ocean talking to the seagulls and taking my dogs for long walks.
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Tex, I get sick of dealing with them as well. I am becoming pretty diligent about requesting a detailed copy of hospital bills especially, ever since I discovered they had charged my Mama's insurance company for 5 days of oxygen at !,100 a pop and I stayed with her the entire time and she NEVER had oxygen one single time. yet they charged for an extra 269 of copays and deductibles...they told me it is standard practice...to me it is medicare fraud and one reason people cannot afford health care. I get so angry over this and wanted to report them, but was told it would cause me more problems than it would solve. I'm still leaning towards reporting it to medicare..anyone else dealing with this...???

Daughter...I understand...I have gone through so many ranges of emotions and I have hit some lows that are so low I feared I would not be able to come out of them. Then I have my moments of being so thankful that i am able to be here. The latter is what I want to be. But I do get so tired...bone weary tired..the kind of tired where I just want to lie down in the middle of wherever I am at the time and start bawling and screaming...but then again I love Mama so much and I want so much to be here for her...I have tried to figure out what makes me the way I am...I think for me what is dawning on me is the extreme highs and lows in her condition...the days where she is smiling and happy and we get to share some precious moments...and then the other days where she is not feeling so great and you can tell she is unhappy...she is running a slight fever, so you're dealing with that....I am trying so hard to make sure she is happy and comfortable and I know it is going to kill me to lose her...or at least it is going to feel that way, but I have definitely decided it is the constant ups adn downs . Today is a huge day of football in our state...Mama and I used to always watch the games together and now it is just me, alone, everyone else is having their football parties...these are things they could come here for...but to them it's not fun to do that...and that is sad...it seems for most folks it is not fun to come here for anything.....it depresses people to come here ...to see her like she is now, remembering how much fun she has always been...but in my heart that is exactly WHY they should want to be here...she has always been so fun and loving and there for everyone and now when it matters most, they are not here...and the anger drifts in..Mama deserves so much more...I guess that is why I am determined to continue trying to hang in there....I am guessing you are worn out emotionally and physically and see no end in sight...that is how it seems isn't it?? But then I don't want to see the end because that will mean she has left...but I also know that is when she will be whole and completely happy again...and so it is a vicious cycle...God bless you...I understand...I wish I knew what to say....today is one of those days where Mama is not feeling too good...after several days of highs we are back to the lows...I think I used to take it personally, like I was doing something wrong...I know I am doing everything I can possibly do...and so I am having to find some kind of peace with it all...I will say a prayer for you...and for all of us...it is a very difficult journey....and this time of year makes it that much harder....
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I am definitely whining. I get so tired of having to deal with my mother's medical bills. Something weird is going on about what her pain MD is doing as far as the chargers of drug testing her.This is now the 2nd time we got a bill from blue cross in South Carolina, a state we don't live in and this time they sent her a check, last time they wanted money, the thing is we have been going to this same md for 2 yrs. and this is the first time he has sent the urine specimens to a lab out of state, the hospital he is affiliated with is a level 1 trauma,research,university hospital, why is he sending a simple urine drug test out of state? Something is going on, now my whole coming Monday is going to be tied up with phone calls to blue cross south Carolina and her actual insurance company that sent paperwork that they have been billed for the same urine test, and the phone calls that will have to be made to the mds; office, I just want to run down the street screaming I am so tired of her paperwork.alright I am done now.
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I am 62 and weary. Is it selfish or wrong of me to not want to do this (caregiving)? I am stuck---and I mean stuck---in this job. I have grown not to like the job and not to like the person I have become. I see NO happy future whatsoever for me. I need more than respite. I need to have a life.
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im pretty happy today . insulated my heating stove from the block mass surrounding it and all temps are up -- ash bed , stove surface and the room. i have to work in the cold but id like to be warm when i get home .
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Jeanette - I found some socks made by Dr. Scholls at WalMart and Meijer - they are specifically for diabetics and have very loose elastic at the top, no real "grip" at all on the legs. I wear them and use them for Mom in the winter when she goes out, because the cold makes her feet shrink a bit, and her shoes get "sloppy" fitting, which is a huge fall risk for her. They're about $8 or $9 for 2 pair, but worth every penny to me. I have issues with edema in my own legs and if I wear regular socks with elastic, the result is pretty horrible-looking at the end of the day. Don't have that problem with these socks.

Seems like Mom is sure fixated on that chair! I hope something helps soon.
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You guys are too kind. I do no more or less than other caregivers. I complain. A lot.

Put up a giant lime green fluorescent sign. "Mom's Chair"! What did I hear? What chair? The one with giant sign that says moms chair. Where? Turn around mom. (shuffle shuffle shuffle) where?

Even though I never thought I could deal with incontinence.... it's a walk in the park compared to "sundowning".

My dad was a strong stubborn man. Oh snap, the stories I could tell about his last 6 months of life :)
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I agree capt. Her strength and grace inspire me. Her mother is blessed to have her.
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jeanette ,
after caring for your dad and now your mom you must be well over the edge . no wonder you cope without a complaint . thats a compliment believe it or not .
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Veronica, you are so right! They are not popular here in this little town...neither are chux. I ended up getting some that said we didn't have to take pants/shoes off. What it didn't say is I needed to read the darn directions and experiment on 2 briefs before I figured out their so called velcro tabbing system!! Wal-Mart did have nice bed liners.... hey, 8 of them for 12 bucks!! NOT!! I went a few isles down to the pet section. Bought 30 pee pee pads for 8. Pee is pee. Don't think mom would care for a skirt, she's a jeans n blouse type lady :) Although, I bought her loads of sweat pants. and flannel type shirts. She likes the warmth....As far as socks, she wears socks with no elastic... if her feet swell those elastic bands are wicked.

Bless your heart katnmouse.... 20 years in a hospital plus taking on the challenge of your husband :) I do agree that a good morning is a dry morning... which reminds me ... I still need to make her bed. Thank you for the suggestions... never knew they had disposable pants now? Nice! No laundry!
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Susan and Jeanette, Working 20 yrs in a hospital, I thought I could handle "body fluid". How dumb was I? Pretty dumb. My husband has confounded every attempt to keep everything dry. We are finally at the stage where he is in disposable diaper type pants with disposable pull ups over that and finally underpants with the short legs to keep everything from going to the floor. Night time is layers of washable pads, covered with disposable pads. A very good morning is a morning without washing the linen. I thought he would give me a hard time about the disposables but he really didn't. Try the pull ups and later the pull ups with the pads and so on.
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Jeanette the side fastening ones don't seem to be popular in the stores so you may need to order them from a medical supply house. If she is wearing pants over them it may be OK but wearing them alone when able to walk around will let them slip down. Last year when in hosp with acute diarrhea I could not get them tight enough and had to walk around holding them up. Hubby brought me pull ups which worked better. Would Mom wear a skirt? maybe with knee socks for warmth.
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The non shirking of responsibility is more than likely what caused the mental illness!!

When my mom asks me a 1000 times a day where a damn chair is I am being modest with the number. This is not a big house. Her chair is RIGHT THERE!! Right where? Right there? There? NO, there!! Your standing right next to it!! You mean here? Ohhhh myyyyy gawddddd then, as if on cue, she walks to the couch and tries to sit on a dog, or goes to the other couch where I have a doggy pillow for my oldest pup and sits on him. She sits everywhere but her chair, she even tries to sit in the air. Wait... while she's wandering around looking for a chair she complains her legs hurt and are about to give out. SIT DOWN THEN. Where? There. Here? Yes there. and they wheels on the bus goes round and round.

Marinating? Yup.

I'm looking for the side attaching kind. Too hard taking pants on/off several times a day.
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What is so frightening to me about this article is that it's so easy for us to see the nightmare scenario of Mom refusing to assign POA, refusing anyone in her house, refusing to move to a NH. If you're dealing with a parent whose health issues don't include neurological problems, how do make a parent allow you to get the help you both need.
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Thanks Jeanette, for the suggestion. Like I said, though, it's not the waist size of the undergarments that's the problem - it's the height from the crotch to the waistband in the back - it's too short. I *did* find one that's a possibility online, and am going to contact the company and see if I can get a couple of samples to see if they will work. They had a video showing the undergarment unfolded and it looked plenty long (I hope!) to reach up above Mom's backside. That's the next step, because the pads just aren't cutting it anymore. It wouldn't be bad if she would change them now and then without being reminded, instead of sitting there marinating in it all night long when I'm not up to remind her.
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"…shirk responsibility…"??? What an absolute ****. Not a word I use very often, but if the cap fits…

Shirk. My God.
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That is a scary yet awakening article. Hopefully we all won't end up in the same situation. Yeegads!!! Me thinks I will look into getting more help as well. I've changed sheets on her bed 4 times this week. Maybe a thicker depend? Something...needs...to....give.

Susan, as hard as this all is, you are lucky you can verbalize all this with your mother and get her approval for a NH. You will know she's ready when you simply cannot do it any longer on your own. Since your mother is a large woman, there is no way you will be able to provide any physical assistance for her. Oh, I was wondering, is your mom able to get in and out of the shower on her own? Maybe this is what's scaring her out of showering? Also, I did find on the web, depends for larger adults. All the way up to 4XXL. They're out there is you are willing/able to pay a higher price.
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Our local newspaper is doing a lot of caregiving articles lately, which is good, it's an eye opener.... but they are preaching to the choir, not to those readers who might next year face being a caregiver out of the blue. But it's a start.

I wanted so much to reach out an hug the daughter in that article, she was all alone in this battle and her mother not realizing it was guiding her into the wrong direction. And being the good daughter that she was for all those years thought Mom knew best.

What irked me was the Assistant Commonwealth Attorney said "that the daughter was using her mental illness to shirk responsibility — despite her guilty plea — and urged a Judge to send a message to others who care for elderly relatives". I would love to see THAT attorney to spend a couple of weeks caring for an elder who isn't mobile and who had dementia. Bet his tune would change real quick.
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Wow, FF, there's a cautionary tale indeed. As you say, poor woman. What sort of angle was the Post taking on it? I'm just not sure who, exactly, was being abused here - failing to report a death, which is all she seems to have done, stretches the definition a bit, doesn't it. I hope it has a good outcome for her in that she'll get the support she must need after all this, and, again as you say, that it weights others' decisions in favour of getting more help.
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In today's Washington-Post newspaper was an article about a woman 70 years old and about her mother 98. Back 20 years ago the daughter moved in with her Mom after her father had died. The Mom and daughter became best buddies, they would go places together, enjoying their lives together, the daughter had worked outside of the house. Then it all started to crumble 8 years ago when her mother needed much more help. Daughter quit her job.

Fast forward to last year, the mother had dementia and was in a wheelchair. The daughter had become so overwhelmed that she herself became paranoid and couldn't think straight. Someone call the authorities who tried to get a caregiver in to help this daughter care for her Mom, but the mother wouldn't allow.... plus the mother refused to go to a nursing home. Well, the mother died and it was days later that the daughter call the authorities to help her.

The daughter was charged with elder abuse... and she pleated guilty but the court is looking over the mental state of the daughter. The elder abuse had to do with the daughter not allowing someone to come into the house to help her or having her mother transferred to a nursing home. The Mom didn't die from neglect, she had a heart attack.

That poor daughter, I could see that happening to anyone caring for an elder or spouse who didn't want outside help or who didn't want to move to a nursing home. You want to abide by your parent/spouse's wishes. Maybe society needs to let the grown children caregiver know it is OK to get help, that it is OK to put Mom or Dad in a nursing home.
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Okay, so mom was up again at 4:00 AM, fully dressed, getting her breakfast ready, telling me the door (front door) won't open (I bought the door knob covers after the last time). I took her cereal, placed it back into the Tupperware, headed her toward the bedroom, where she got into bed.

Heard the door open again, got out of bed to watch. She went into the bathroom, was in there for a few minutes, then went back into her bedroom. Wasn't too comfortable with the clothes in the bed thing, so I went in and told her she needed to put her pj's back on (I needed to impress upon her that it was still 'night' and she needed pj's at night). I asked her if she had slept. The answer was no. When I asked why not, she stated she was watching the clock.

So, this morning, she's up again, way too early. She lies when I ask her the questions (I know this is part of the progression) and doesn't listen if the tv is on. So, I shut off the tv and told her to look at me and I asked her if she was worried. She can't verbalize very well. I don't believe the answers she gives are correct. She says she's worried about 'me'.

Just now, she asked if she could empty the dishwasher to which I said yes. I had just cleaned of the frig and found an old Tupperware container that had frozen in back of the frig, with pineapple in it. So, I put it in the sink, thinking it would defrost and I'd throw it into the garbage disposal. I turned around and saw her with the cover OFF this particular container. I asked her what she was doing and she said she was eating this! I almost died. Totally frozen pineapple, and she's trying to take it apart and eat it!

Now she's sitting out on the lanai doing her word searches which is just circling letters right now. She's definitely gone down a bit, another plateau.
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I have to laugh sometimes, though - even if it's out of sheer frustration, so I don't cry....

Just a while ago, I went into the bathroom, and as always, I check the trash can to see if Mom has changed her incontinence pad. There was a used pad in there, but no wrapper from a new one!?! So I went out and asked her if she had one on - she insisted she did, but I told her to please go in and check, so we don't have a major flood when she gets up out of her chair (which is when she has major accidents). So she goes into the bathroom, I follow her and tell her to make sure she takes a pad out right away (or she forgets). She says she will. Silly me, I don't stay to make sure. I'm still riding that fine line between giving her privacy and dignity and totally taking over everything she does and watching everything, even her most private moments.

As usual, she sits in the bathroom endlessly, doing absolutely nothing. Just sitting. At times, I've gone to check on her, and she's been sitting on the toilet, underwear pulled up, not doing anything, just sitting there. I worry one of these times, she's just going to pee right through her clothes doing that. Sometimes she falls asleep in there. So I remind her to put a clean pair of underwear and a pad on. She says she will. A while later, she's still in the bathroom, and I ask her if she put a pad on - she says she did. 2 seconds later, I hear *crackle*rustle*rustle*crackle* ....the packaging on her pads being opened, and the *rrriiiip* of the cover on the adhesive strip being pulled off. But she put one on...right? Like she told me? (sigh)

I know she's not lying to me on purpose - or at least I hope not - but I do know that she tries to sidestep doing things she knows she should, because she just doesn't want to do it.
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57twin - thanks for the thought - not sure how that would work or who I would contact about it. I suspect we're just going to have to continue using the pads until she hits the NH stage and then they'll have to find a way to deal with it there. I'm going to call them sometime in the next week (when mom is sleeping) to see if they have any suggestions.

Jeanette - I guess it's just one of those times when things feel a little overwhelming. I have 2 relatives or near-relatives (like my sis-in-law's mother) who are elderly and declining very rapidly and it's hard to watch, knowing that one day relatively soon, that's going to be Mom. She's already going downhill faster than expected, but one of these days, it's going to be a very marked decline. I was thinking yesterday, "How do I determine when she needs to go to the NH, finally? Do I wait til she has a stroke or some other major medical issue, or at some point, do I just say 'that's it' for me?"

I know I will wait until it's absolutely necessary, and hopefully, the decision is taken out of my hands - she knows that if she becomes completely unable to walk anymore, or requires any lifting, that she will need to go to a NH. She doesn't like the idea, but she understands. We've had long talks about this.
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SusanA have you thought of havjng someone make custom underpants for your mom?
That could help you out.
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Susan, I got the stages info off the Alz.org website. The tissue problem is mention in stage 6. They say it isn't good to go by the stages anymore and some docs just don't believe in them. So... you can't judge purely on that. I thought it interesting how SO many go through the same exact issues.

If I go by these stages, mom has been in early stage 7 for 6 months or more.

Nothing in set in stone

Why the doldrums? Is it 34 outside and heavily raining since yesterday? LOL I barely got the trash cans to the curb. Those giant raindrops felt like frozen water. If ya wanna do an ice bucket challenge all you need to do is step outside!!
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I probably should do some cooking and cleaning tonight - that always helps get me out of the doldrums.
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