My "whine moment today." What's yours?

I have a whine and I'm really troubled at how to handle it. It has bothered me to the point I actually woke up during the night thinking about it...and that I do not need with all the other stuff going on . I love and respect all of you so I hope none of what I say is offensive and if it is feel free to let me know, but....every now and then there seem to be things that come up and it brings about a discussion about people on here who are fake or this one writing a certain way etc. to be honest, that troubles me...who knows, it may be me those comments are being directed at...but my point is, it kind of feels like a "mean girls club" on here at times. There is some saying about when everyone notices something except for you, maybe it's you...so maybe it's because my world is so tiny these days, or I am just worn out and things that shouldn't hurt do, or maybe I just don't need to be on here anymore....but it kind of troubles me because I fear there may be others who also get hurt and when they are already hurting I don't want to be adding to their pain. I think I'm rambling, I am not meaning to be offensive....and as I said, I have come to feel really close to most everyone with whom I "chat" here and there, but there is enough that is painful in each of our worlds that I do not want to be the one person who made anyone feel like I had added just enough hurt or pain to send them over the edge....I guess I thought this site was one where anyone with caregiving issues could come to vent....maybe I have been here to long....I don't know....none of this is said with any anger or malice.....anyway, just bothering me enough that I had to say something...

laxatives are definitely an adiction, same as stressing over bowel habits!

Jessie - I understand what you're saying about the laxatives. My grandmother on my dad's side was deep into dementia (delusions of being in the CIA, people were stalking her and breaking into the house so she nailed the windows shut, driving off into the night and disappearing for days, etc) - and she insisted that she had to have a suppository every single day, sometimes several times a day. She made her stepson (who was in his late 60's and still lived at home) insert them for her. I can't even imagine being in his position. It only stopped when she was placed in a nursing home.

CM Maybe Mum could share some of them with your other house guest unless they are the pretty pink ones that is. Are they individually stamped "Goverment property"
When I worked in the NHS every single sheet of TP had that stamp!

CM.....I had to laugh re your dilemma with the massive order of supplies. Our current hospice provider only orders supplies every two weeks, so every other week we receive a massive quantity of diapers, ensure, barrier creams, lotions, gloves, etc. Don't get me wrong..I am VERY thankful for them...all of it, but our home has looked like a NH for so long it gets depressing sometimes...That was the main focal point of my recent mission to clear out the attic.

We already had a house full of stuff...when I moved my house of stuff home, we now have TWO housefulls of stuff...now with the huge deliveries so frequently, there is literally NOWHERE to put it...it was driving me insane...so I finally got that attic cleaned out...Thankfully we have one of those attics that you can just walk up a nice wide staircase into so I cleared off all the steps and put those huge boxes of pads, diapers etc. on those steps, easy to access from the hall and totally hidden from guests...Unbelievable how much stress it took off me just clearing that clutter away....

cmagnum....agreed.....Linda22.....agreed. I am more than happy to discuss anything calmly if someone has an issue with me. I hate when anyone doesn't just go to that person, in private, and talk out the issues. I can't fix something that I did not know I broke. It is extremely childish.

What happened, cmag?

cmag, one of the difficulties with passive/aggressives is that you don't have the opportunity to discuss the problem and set facts straight. So sometimes they have their knickers in a knot needlessly.

My whine moment for today is how irritating passive aggressive people can be in refusing to deal with their anger directly with some, they instead complain behind your back to sympathetic ears who turn against you, but sulk in silence when you are around. That just plain sucks and is so childish! That's all!

Mom is still mad at me this morning. Last night she blew up at me because I wouldn't give her some laxative pills. She didn't need them, because she pooped all weekend, and we have doctor appointments today and tomorrow. She gets diarrhea when she takes the pills, so I knew it was a bad idea, given our schedule. It turns out she pooped without the laxative. But she is still mad at me. Today is going to be a real joy, taking her to see a new doctor with her in such a foul temper. Last night was one of the worst, with her anger and nastiness. The truth is that for some reason she enjoys taking laxatives. I had to take charge of them a couple of years back because of laxative abuse. One day she took 18 max strength Exlax then complained about not feeling good. Well, doh!

If my mother could take a pill to make her breathe, she would take it. I am afraid that with her, the secret of living is contained in the little pill form.

h*ll katie,
my son and i make as good of chilidogs as you can get but then theres still the issue of the apple core hor . oughtta pull a gallagher on her -- sit her down to a big old turnip or something then dissipate it with a 10 lb wooden mallet .
then theres her son who doesnt like cheese . i call BS on that one . you dont feed that sob for about ten days and hed eat cheese plastic wrapping and all ..

Katie yes caregiving does throw you in at the deep end but many people find they can do things they never knew existed once they are shown how. Remember nurses and Drs started out from the same starting line which was knowing nothing! Everyone has to learn. There are things some people just can't bring themselves to do and that involves professionals too. a loved one does need to meet certain criteria to be eligible for hospice especialy under Medicare but palliative care is one step before that and may get you some of the same benefits. I don't know the details but it may, and don't quote me on this, get you and aide to help with bathing or volunteers to sit with Mom while you go out for example
To get real benefit from irrigaating a catheter it does need to be done once or twice daily and the proper cleanliness proceedures followed. But ask the nurse when she comes. She may just have thought you would not want to do it. It is no more difficult than emptying the bag. If the urine is thick or bloody irrigating helps keep the catheter clear so it does not need changing more than the usual 6 weeks which Mom may appreciate. Some older (and younger) women do find the process distressing.

Countrymouse, At least they were in the house! Years ago a delivery driver left a bedside commode on my Mom's front porch when she lived in another house! Luckily there was a large shrub hiding most of it, I got there soon after he left it there and took it inside. You really lose all dignity sometimes.

Whine: the district nurse told me she had ordered incontinence pads for my mother. They came this morning while I wasn't looking. Four cartons of them, sat in the middle of the kitchen. Where on earth are you supposed to store 360 full size incontinence pads at a time???

Then I thought - how did the delivery driver know he'd got the right house? And what if he hadn't, and he'd just left them? Imagine getting home to that lot unawares… :D

Veronica91, My Mom has a nurse come in twice a week, but she is not in hospice. Every time I had brought up that subject to people, or last time Mom was in the hospital I get blank looks or told palliative care is what she needs. The last time the home nurse irrigated the catheter it did seem to help. I will ask her to do that again today and hope it remedies the problem. I am always so worried about so many things I never thought I would deal with before.
Captain, if you do go to Chicago and get sick of the vegetarian food, you can always go to the Billy Goat Cafe and fill up on cheeseburgers...or some Chicago Dogs.
I hope everyone has a better day today. Day at a time....

Cap, go visit. One never knows if they will ever be invited again. Be nice. Grill some f**king vegetables. Good grief. You should be happy they still invite your old goat a**. Yep. It is blatantly obvious why you are single. Even weirder is we still love you. Grizzly old bear.

Yes Jessie, this is the "funner" side of caregiving. She has kicked my a** this week though. She had her monthly doc apt on Friday. He suggested doubling her Resperidone on the nights she walks for hours. Really? Waahhh... the other night during her marathon I made her watch hours of youtube... my favorite songs!! LOL. Much to my distress it didn't work. haha, I went to tickle her ribs yesterday... way down.... grabbed a tiny handful of a boobie and about fell over laughing.

Least her teeth are back in and she's eating like a mule. I've about run out of things to put in the damn blender!

Jessie... sorry but you do know she will only get worse (crazier) right? Don't be alarmed when she starts talking to the wall, tv, mirror reflection and of course NO ONE... oh wait, when she shuffles so close to you and stands in place shuffling, just looking at you. My mind goes numb and I have zero clue what to say....

Jeanette, it is hard to put the caregiver cap down. Even when I'm out my mind is working over things. It doesn't help that people I see all ask me how my mother is. This week if I were truthful I would say she's crazy and mean. And I'm really starting to believe that she's immortal. Crazy, mean, and immortal this week.

If you really think about it, being on here is still caregiving. It is just the more fun side of it. I just thought about this. You guys are a definite benefit of caregiving.

ive been invited to visit my son in chicago for a couple days during this crap weather but although i like his girlfriend i dont give a rusty rats a** about preparing special meals for a vegan . its insulting to me that someone needs to be so " special " . if she prepared s*it on a shingle id eat it just to be kind and appreciative .
getting easier every day to see why im single , eh ?
i aint goin to chicago nohow . it was colder up there 3 weeks ago than it was on the surface of mars .

What is living independently? Seriously, I think I have truly forgot what it is actually like to... live, smile, laugh and generally be happy. It's been such an exhausting week. What I will whine about tonight is... I need several days off. Several. They have to be away from here or else I just keep doing what I have been doing. Even my p/t carer scolded me for doing HER JOB when she's here. Somehow I need to figure out how to unwind...

Me thinks I need a very long stay somewhere nice and quiet.

I must be gullible because I don't ever seem to spot or suspect anyone....I guess because it seems like a lot of times truth is stranger than fiction, so the more far out there it sounds, the more I guess it could be true...maybe it's just because I feel so mangled most of the time I'm kind of worn out mentally and don't pick up on it...whatever the reason, maybe something positive can come out of all the posts...

It is so cold here tonight and I am going to put my feet up and get me a good hot cup of coffee. maybe have a bite of my aunts homemade fruit cake... :)

Veronica91, you are so right about the imaginary story tellers... or as I call them Lifetime Movie scripts as the story starts to detour all over the place.... there is one I can spot because of a certain writing style. Anywho, if one of us can learn from another's *answers* it was worth reading :)

looloo, wonder when will it be our turn to once again live *independently*? I know if my parent had moved to that wonderful retirement village they would have MORE freedom because they wouldn't be needing to wait for my schedule to open up to take them here or there... we would actually have MORE us time as a family, instead of running errands.

Katie catheters do cause bladder spasms quite frequently as do urinary tract infections. Is Mom in hospice? I looked at your profile and there is no information about you or Mom so I am kind of commenting in the dark. Another problem with catheters is that many of them contain latex which some people are alergic to and that could be causing the spasms. In general they can be very painful so something needs to be done, even if it means removing the catheter and just using the Depends. Don't let this continue call the hospice nurse. there are certainly medications that can calm the bladder and i was not aware that they interfered with fluid retention. They are certainly very drying and Mom would find her mouth very dry. Another option is to irrigate the catheter. you can be easily be trained to do this. All it entails is attaching a large syring with sterile water or saline and pushing it into the bladder and letting it drain out again. this sometimes solves the problem. I would not drag mom to a urologist this really can be taken care of at home and is a very frequent problem with hospice so they should know how to deal with it. There really is nothing different a urologist is going to do.

Veronica91, it is dismaying that someone would get on here and make up stories just to amuse themselves when there are so many of us that are going through so much stress with caregiving. But like all stupid people, they will trip themselves up and give themselves away. If people have that much free time you would think they would find better things to do with it.
I too am having a rough day but it is with persistent bladder spasms and leaks into the briefs despite the catheter. I have heard that catheters can sometimes cause bladder spazms. Doctor won't prescribe anything for the spasms as he says it could mess with the fluid retention, and if it keeps up I should take Mom to a urologist....that is so very hard to do with a bedridden person. More specialists...really!!??? Ugh. Tired.

my train of thought hasnt been aborted or abandoned -- i still want some medicinal skag .
sorry , i cant comment much on the superbowl game . i have no idea what those maniacs are screaming about , i just wish i had a fraction of that kind of energy .
id swim to turkey and get me some medicinal skag ..

hobbesmom you are correct this is a site where you can safely air your feelings and frustrations and often learn something along the way.
The whine is that some people keep comming back asking the same questions day after day and then they are gone in a puff of smoke and people are left with the feeling they have wasted their time and energy trying to help people who never wanted it in the first place. the other problem is there are what are called 'Trolls' these are people who come on with a story about an imaginary situation and just sit home adding more and more details to amuse themselves. eventually they trip themselves up and get called out and they too leave but again they may return with another identity. one one ocassion someone came on pretending her father had married her late mother's best friend to get their money. this woman was very close to the wife and even took the ife to all her treatments.I think she was actually a cousin. Some months later the same story appeared from Australia and I wrote and asked if this was the same cousin who had taken Mom for her treatments. Instane disappearance! None of the regulars will call anyone out for wasting time, it is just that everyone learns from all the questions and comments and it is very satisfying to know how something worked out for another poster. This is a very caring site and many good friends are made. people do sincerely worry about someone who is in great distress and we have no way of contacting others directly.

Jessie helmets are now available in custom colors and patterns so you should trade in your original with the zigzag patterns because they are said to promote further disorientation in the parent with dementia.

@Freqflyer, you said, "My whine is whenever we here on the forums spend a lot of time on an original question, with dozens of answers, looking up information, etc. and the original poster never comes back even once to reply :( "

The short time I've been here, I've seen that happen. Sometimes, "regulars" call them to the carpet for that.

This site is a sanctuary of sorts - a place to vent and express frustrations. I would like to think that even though some don't give us an update or do things members have suggested...it still is a seed that gets planted and perhaps later, they will act upon the exceptionally good advice found here. If nothing else, this site gave them a brief and safe respite.

looloo, you sound like an official member of the Helmet Club.

ff, those of us who monitor and contribute to the care and wellbeing of our parents (as opposed to providing hands-on caregiving), while working, taking care of our own families and maybe even our own health issues -- it's a burden that our parents just don't recognize. Or won't recognize.
I started keeping a timesheet several months ago, tracking everything that I do for my mother. At the very least, I handle her mail 6 days a week. But there's always several more items that need to be addressed most days, and there is always a "fire" or two that needs to be put out. This is all so that she can continue to live "independently." If she were in an AL facility, it would cost much more, but she and my father saved and she has long term care insurance, and I was under the impression that this was what the money should be used for--her care. I'm going to a heck of a lot of effort handling everything for her, and she had the nerve to say to me that I'm only interested in her money. Ex-CUSE ME?????? Yes, she has dementia, but she's still a mean person.

What a trying day. Mom keeps saying the same two things over and over again, each time like it's new information. Then I got out a gizmo and she asked me what it was. I told her it was a Venetian blind cleaner, and went to try it out. She asked me another couple of times what it was and I told her. She asked, "Well, what do you do with that?" Oh, gosh. You clean Venetian blinds. I had to leave the room and go to the bath to bump my head on the wall... and without a helmet. I am starting to wonder how we're supposed to live through this.

Mom is going to visit a new doctor -- an ENT -- tomorrow. I had to fill out all the paperwork this afternoon. Page after page after page of it. Then I had to get her to sign in all the right places. THAT was a challenge. The bad part is it asked her why she made the appointment and she didn't know. She asked me why she made it, and I certainly didn't know. Really, I think it's just the wintertime hypochondria thing she goes through. She calls my doctor cousin so he'll make her an appointment with someone. That way she gets around me.

While at work I was on the phone with my Dad, trying to straighten out the eye doctor appt and the hearing aid appt. Dad said he and Mom wants to take a cab to their appointments. Ok, great idea BUT I need to come along because Mom can't hear that well, so it is better having another set of ears. I didn't want to say to Dad that he never pays any attention to what's going on while at the doctor unless the doctor is dealing with Dad's OWN issues. Therefore, I will be driving them to their appointments.

Then Dad and I talked about Mom's hearing aids. Dad said "why didn't the previous hearing aid doctor give Mom two hearing aids, Mom wanted one for both ears". I said: "Dad, that doctor tried two hearing aids on Mom and Mom didn't like it"..... Right there is the reason why I need to go to the appts with them, Dad didn't recall that happening.... [sigh]