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Veronica, you are right, the respect thing is huge for me...it matters to me, but it matters more that Mama be respected. The aid in question is a nice lady, but anyone who has had someone who is completely unable to lift or turn or anything knows how hard it is to move them. Maybe I'm stronger than I think I am as I learned within two months how to do it without hurting Mama or myself. I surely don't want this sweet lady to get injured on the job, and I don't want to be a complainer, so I have been trying to think and i think what I may do is when she comes and reaches the point where Mama needs to be rolled, I can do that and let the aid bathe her backside. I can change her gown. I would rather have someone who can actually DO it but I am finding that may prove difficult...Our last aid (with the other company) was great, she was tiny but she had no problem handling Mama...it could be the new lady is just not in great health and if so really doesn't need to be moving patients like Mama...it is just so bizarre as Mama is a little lady, but again, being totally incapacitated makes it a whole "nother" story...thinking out loud now, but after typing all this it dawns on me I am actually saying I will hang around to make the aids job easier, which is no help to me at all, and would be less aggravation to just do it myself...I am more and more seeing I am too much of a people pleaser..I guess I just don't want any more drama...I thought I'd give her one more chance today and see how she does. Could have been first time jitters or nerves, we've all been there for sure...but if it is as hard on her, and me, and especially Mama, as it was the other day, then I will either need to change aids or just do it myself...normally I can do it by rolling Mama ONE time, this poor woman had to roll her and roll her and roll her...I honestly don't think she's used to handling patients as helpless as Mama. All I know is she came in all happy and bubbly but it wasn't long before she was winded and huffing and puffing and complaining and it is just wrong for an aid to come in here and complain about taking care of Mama...mercy mercy, I wish I could do things without fearing I am putting folks in a pickle...
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I have, for the most part, been in touch with my feelings and what makes me tick all of my life. I think I have pushed that back for so long since Mama had her accident, and of recent, I find myself losing my mind every so often, so I feel the need to rant and whine and gripe...so please forgive me and if you don't want to hear it please scroll on past...BUT.....what I hate about caregiving is NOT the caring for my Mama, the laundry, the actual caregiving part of the deal...it is the never ending and constant stream of people popping in on me...I HATE IT....I am such a private person, maybe to the point of being a freak about it, but i literally despise all the d*mn do gooders who THINK I want to see them and even thought hey have been told repeatedly they continue to pop in....Dear Lord in Heaven , I have prayed for wisdom in how to deal with these folks, but doing it the nice way does not work and so I find it necessary to post something on my social media page about it. What is it about people who think you enjoy them just popping in on you???? They don't have a d*mn clue what is involved in caring for someone or they would not do it...there is no telling what I am going to be in the middle of at any time of day, I am normally going to look like hell, most always am gong to feel like hell and most of the time they have the most uncanny knack of catching me right when I finally actually got to eat my breakfast ...sometimes as late as 11;00...or lunch....as late as 3:00 or else they wake me up when I have dared to catch a quick cat nap....sometimes I just want to pain a big d*mn skull and crossbones on the front of the house and a sign that says unless I know you are coming, go the hell away.....
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I need to join an AAA for control freaks....I don't know of any...so I will just say...my name is Hope and I am a control freak...and the fact that I no longer have control over anything in life is about to send me hurling myself over the back deck railing.....the sad thing is, I got the caregiving issue down...it gets tiring, but I can do that...no problem....what I hate is all the people..the damn people...the non calling, non appointment keeping people...hate it hate it hate it I guess nothing can be set in stone in this situation...my biggest thing is now that I have got to find a way to roll with the flow or perish...I know folks can't always be on time, but over two hours late and I finally call and discover they decided they would come on Friday instead of today... OK, thanks for letting me know.....
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Hope, you sound a lot like me, with the people-pleasing, the fear of imposing on people who are PAID to be there, doing those things. And in your other post, you say you're a control freak, but I don't think that's it at all. You use up every ounce of patience rolling with everyone else's needs and whims.
It took me a full day to get up the nerve to call the home care agency and ask the person in charge to please talk to my mother's care giver, and let her know how important it was that she be more 'take charge' and not be intimidated by my mother. If this person is going to be cowed by my mother, then what good will it do to have her there? I'm doing this pretty much long distance, and I am not able to babysit the caregiver (ARGH!).
Don't belittle yourself, Hope, and wrongly label yourself by saying you're a control freak. You've got to have some REAL, RELIABLE assistance from the people you pay. And you need some real downtime for yourself as well. Don't apologize for that.
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frequentflyer -- yeah, I get that they are simply unwilling to adjust, and their reasons/excuses are the same thing, every day, and nothing you say will change their attidude. My mother has been saying for a month now, since she lost her license (but still drives -- YES, we're taking the are away Saturday, it's the soonest we can get down there -- and she could well decide never to speak to me again, which wouldn't be the worst thing), "I'll be a PRISONER in my own HOME!!!!" I tell her over and over and OVER, "I don't think so. You have regular transportation twice a week (it'll be 3 times starting next week), and you have a community service that you can all any other time. And you have your neighbor, who takes you out at least once a week. Everything is fine."
She doesn't hear me, because she refuses to listen. She wants what she wants. Well, guess what? I get to be the evil daughter from h*ll in a few days, and will take her car away before she gets arrested, in an accident, someone gets hurt, she gets sued, etc....
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lol , hope .
control freak .. i visited edna today . nurse kindly told me they were going to get ednas bangs clipped out of her eyes next week . mr control freak with the scissors in his back pocket said " thats just great " and smiled in agreement .
we got caught right after lunch . edna sitting perfectly still with her eyes closed and me trimming hair .
" dorreen " gave me free lunch again , nobody was surprised by the hair trim and they all learned what ive been sayin . just work around poa . shes thick between the ears ..
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What makes me resentful is that my mom didn't care for any of their parents and she didn't ever work outside the home. So she has no clue how little time you have when you're doing both things. I cringe when I hear the words "I need..." or "swing by.....". I've told her if I can't get it at Target or online, it's not happening.
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looloo thanks...I do feel like I end up aiming crap at myself that ought to hit someone else between the eyes. I am STILL dealing with our tooth issue...and I already called the manager today to discuss what I NEED..otherwise, it is more trouble than worth re the bathing....and turns out I didn't have to be ugly to get it done, just did it...

Captain..haha.....now I am a fan of the hair clipping shears myself. I cut Mama's hair all the time...I think you absolutely have the right approach, let em hoot and holler and then when they go do what you want to do to help your loved one and yourself...I also cancelled today's bath appointment..by the time she got here it was going to be right in the middle of mama's nap and so that is zero help..and if it's no help then what's the point...the nursing is great, the provider is great...I can live without the bathing aid unless it's someone who is an actual help...now I feel better....
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Glad when my mother could not manage alone any longer I quit my career, sold m,y home and moved to take care of her. She's had parkinsons for 15 years, dementia for about 6 or 7, had many strokes and broke a hip a number of years ago.

With so many health issues and continued deterioration, after four years it was clear I couldn't care for her 24/7/365 any more and after a really bad fall (again - 2 a.m.. blood everywhere, called an ambulance) which put her in hospital she went into the NH 18 months ago. Since then she's had another stroke and broken the other hip. She's 88, bed ridden, eats little, can barely speak and the dementia is severe. She's just a shell now, slowly fading away but she's in no pain and mostly sleeps.

She's had the very best of everything her whole life, though she wouldn't lift a finger to help her parents or anyone else for that matter, so she's had a good kick at the can. I don't know how much longer she can continue. Could be days, weeks or even a few months. Just go day by day.
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Everyone says to pick your battles, but it's hard to figure out which ones sometimes. Ha! It's a battle to figure out which battles!
Like my mother's gardeners. They don't call me back, they don't do what needs to be done. When I was whining to my husband about it, he was so angry, he advised me not to do the work that they should be doing. But the problem won't be solved that way, and I don't have time to let them go, then find replacements, and so on. So I just make the 6 hour r/t drive, take time off work, make several trips to get hundreds of pounds of gravel because I don't have a truck, and do it myself. Sheesh!!!
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I wish we did not even need Hospice at this point. It is making me crazy....
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looloo just like me...doing it myself rather than dealing with the unbelievable insanity of it all. It's a freaking bath for crying out loud...It took me all of a couple of weeks to learn how to do it.....I just don't understand any of it...oh well....at least this provider does provide a LOT of things that Mama needs and they will not be coming out of her pocket the way they were with the other one...
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hospice blows .. one of the biggest battles of my life -- keeping those feminist thugs between some kind of rangeposts .. i wouldnt say it if it werent true . they spent more time trying to make me look incompetant than they did helping mom ..
what i learned from it ; they report to family doc , you can too .. if they stress your household doc will light em up ..
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Why, Captain, do you not enjoy being patronised by bossy ladies? Well I never x
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Linda 22, oh my gosh, same here my parents never took care of their own parents because they lived out of State [hmm, maybe I should move].... and the last time my Mother held down a full time job outside the home was back in 1946, just before I was born...... neither of my parents have any idea that my free time is far and few between.

Any time my parents need something my Dad will say "oh, if you are going by such and such store, can you get us this or that".... I realize it is a polite way of asking but I have to roll my eyes because I am NEVER going by this store or that store.... Dad, I hate to shop.

Yesterday I had posted about doing on-line grocery shopping and how my parents are trying to get me to go back into the store to do their shopping. They now claim the on-line service is dropping their eggs as the eggs are cracked. So this morning I dropped off the carton of eggs I got from the on-line service for myself, each and every egg is perfect... then I had an AHA moment, these eggs are Eggland's Best and each egg has an EB printed in red... well, my Mom has very poor eyesight, and now I am wondering if she sees the imprint logo that she is thinking the egg is damaged.... can't wait for her to open the carton and use an egg :)
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Whining is good for your "Mental Health". There is good and bad whining. You can call it Mental Health Vent or whatever, it is another form of the same. Whining. It does not mean you are a weak person if you whine. We are all entitled to have a whine moment or err Mental Health moment. Whining that I don't like the flies in the summer or that my garage door fell, or that my mother with AD doesn't appreciate things is not in any shape or form a sign of weakness. Neither is it to any other poster who has "whined" on this thread. We still continue on with our tasks at hand.

So with that said, my whine moment right at this moment is; Posters should take others in consideration before they say they are sick of a title to a thread started by someone else and enjoyed by many. Yeah, that kind of stung and hurt my feelings. Perhaps I am just too sensitive and whiny at times tho eh?

I'm in this for the long haul with my mother. My life has more to it than just care taking, even if it is all consuming at this moment. I have a son whom I haven't seen in 2 years. Friends, a job I loved... an ocean I used to swim in a LIFE. Nothing I can do about it at the moment nor would I probably ever change my decision to care for my mom. I damn sure can whine about it though. It is my Mental Health Vent!
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Finish this sentence: Every d*mn time I find a moment to 'use the restroom'......
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Ankles gone down it was just the flight back!! but i took advice yesterday and didnt drink any water just tea and this morning they are normal again! Just as well as i feel down the stairs twice as ankles wouldnt bend??
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Big whine its hot here and mum stinks! told her politely to shower she said she was too HOT???? Oh please god have a d*mn shower im gagging here! then i find depends thrown upstairs IN THE HEAT oh gosh just beam me back to Spain was i really there? was it all a dream? one week is not enough break for me i would love to piss off for a month!
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I'm having a "snarky" moment and wanted to be the 1100th post :D
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I find our friends slipping away since my husband's PD symptoms changed last summer. I don't think most of the guys, save for one man, know quite how to handle it so they're ignoring it. He's in the early stages, he's still working and driving and all. He just can't stand for long periods or walk around a golf course (he's working on that slowly). I've made suggestions to his BF of things they could do, but this group seems to be really getting into golf. So any weekend plans, any little trips all involve a couple rounds of golf. I have my own little support group outside of these people for my mental health, but this has been my husband's main group. My frustration is that if I had a friend who couldn't do x and y, but can do z and q, I'd make plans for us to do z and q so we could spend time together. When his RLS was really bad last summer, they made plans to play a course that would have him sitting in a car for 4 hours round trip. He told them he could play if it were a local course, but nope, they went north and he stayed home. Yeah, time for new friends, but not an option.
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JeanetteB, I personally like everyone's threads, because its everyone as an individual thoughts and feelings as well interpretations. I always speak strange.. or in this case..type strange. I wish I had advice for everyone though, thats why I do not always answer a lot of questions.. maybe as I get more experience.

Plus, I was wandering everyone, when a thread is long such as yours JeanetteB, how do I know where to start reading from and respond? Id like to be more talkative with everyone here :) I dont want leave anyone out!!!

Anywho, that's cool to be the 1100 post!!! :)

Hugs all
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JeanetteB..hilarious! I seek out the "whine" thread...it's one of my favorites....

Captain, you made me LOL.....and I needed that a LOT today...and you summed it up great...especially after a day like today....hospice blows...thanks for the chuckle....
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that was a strong statement i guess . they done a good job but our home copped a bed bug infestation somehow and i was in the spotlight for a while . while everybody flipped out and dallied , mom and i destroyed the bugs . it can be done but it takes several weeks of making them expose themselves to DE .
aps even came out . my steps jived with what " wendy " had just been taught at a bed bug seminar . that bought some time ..
at the end told em all we werent vaccuming up our protective DE with the suspected bug carrying relatives visiting again . leave us the h*ll alone ..
im still venting a year later . d*mn that was a rough spot ..
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I have no clue why this thread has went as far as it did. If I had to guess though it's because we all get a bit tired and whine at times? Plus it is non topic conforming, just means we can whine or vent? It's not really that hard to keep up with either.. I spent hours reading threads that have 20 thousand plus on them. Hey, those long threads held more info than single questions.

Me1000, I also like everyones thread. How else do we learn? However, I would never single a thread out and say it was bad or toxic or whatever.

This is all of our lives.

So here is another whine... wait, no....it's wine, Pino Grigio YUM!
I am NOT trying to be offensive to anybody. At times I do like a nice chuckle within this thread, it makes me feel not so lonely or alone at caring for my mom. It is easy. Ha! Preaching to the choir.
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Captain, yeah, they do some things well...and I think I am on the learning curve with the new one...I'm not upset so much at them in general, just, as usual, the bath people seem to be the worst offenders for complaining...that is the ONE thing the other one did right...ah well....what's done is done...I did have a nice chat with the mgr today and let her know what I needed otherwise not worth the bother...for either of us....I don't mind bathing Mama, the three times a week, for thirty minutes was a nice little break, BUT if I'm going to have to do most of the work now, what's the point..and especially the ones who do like to boss you around...nope...not in my home
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Linda, his friends getting awkward like that - do you think they maybe can't see what good they do him just by turning up occasionally? And have given up? Keep suggesting opportunities to them and lay it on with a trowel about 'good deed of the day' and maybe they'll come round more (if that's what you would like!). And could the understanding friend help things along too?

Which reminds me of my aunt's friend who had a stroke. And how I haven't been to see her. Oo. There are good logistical reasons for that, but there is also the bad reason that last time I went I did feel useless.
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CM, I think part is not knowing how to handle it, part is thinking he's just fine. All most people know of PD is Michael J. Fox has it and look how great he's doing. When we decline an invite, no one asks if there's a way we can make it work. When we offers suggestions like a flatter golf course, they aren't interested. A few are a tad self absorbed so that doesn't help. I do hope he gets back to golfing for both his need for exercise and muscle strengthening and the mental boost of friends. I guess I'll need to do some of the planning to be sure reasonable accommodation is made.
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Or take up golf yourself…? :)
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i dont have to whine just cause the thread says so . i am going to detox another day or more . big , full stone house coming up in about a month . ill work singlehandedly on it at least all winter as weather allows . very slow process -- very worth it in the end . just finished an incredible and effective hepc treatment . felt so good i made a marathon body building program out of the 12 weeks . body is saying , sit down you frigging idiot , cant you see we have a toxic minefield to clean up here ? probably not going to chicago as planned . it just seems too hurried for now . i dont need " hurried " . my brain is loaded with dead virus that has to be cleaned up too . ill go see my aunt and nurse " dorreens " ass after while . both are therapeudic for me .
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