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What has me a bit puzzled is that at 94 with wet AMD, there's really no course of treatment for her. But I'm just getting up to speed on this particular ailment.
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I am going to whine about other posters.
These are the ones who do not read the answers people have already written. it must be very frustrating for the posters desperately seeking information to see a new answer and then read the same thing three posters back already suggested.
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Veronica there are 3480 comments on this thread?! 3481, now…

But I agree. Though, also, on the other hand, if five different people tell you the very same thing you start to feel they're onto something, no?
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veronica,
conversation jumps around . i read the posts about downsizing this am , worked for a couple of hours and came back with my thoughts on the subject . its a subject ive given a lot of thought to for years . meanwhile people go blind and their hearts blow . that doesnt alter my train of thought . im trying to sell miniature houses half buried in the earth .. ill do it too . monster homes in the uk are already losing value because of upkeep and heating - cooling costs . im 20 yrs ahead of my time and have known it for 20 yrs . affordable multigenerational dwellings can solve a lot of problems from income insecurity to elder care , even family provided child daycare ..
im a real one tracker is what im sayin .
oh well . read something useful from a former hepc sufferer today . she said that the quest for certainty keeps our minds in constant turmoil ( essentially ) . i can use that advice as im always trying to predict or manipulate the future . there arent any guarantees i should know that by now .
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How awful to lose your job or have it discontinued. I feel very badly for all of you that had this very traumatic experience. I sure pray everyone will be able to get another job pronto. In our younger years, I recall my husband and I both lost jobs at different times around Christmas. For some reason, some companies let people go during the holiday season. Is that sadistic or what!
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@SusanA43: I wonder if your mom resents not being in control and not being in charge any more, so it's like a power struggle going on and she's trying to hang onto some sort of autonomy to show she still has the right to make her own choices instead of having them made for her. We used to see that alot in nursing homes and in home health care when the elderly were dealing with or living with their children.
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I am so depressed I can not stand it. I had a sitter lined up tonight so I could go out for a few hours with my husband. It is our wedding anniversary - 22 years married. Power went out at 3:30 and mom was so afraid I could not leave her with the sitter. This was the FIRST time I was going to get out with hubby alone in a LONG time and I needed the break so badly. Feel like the Gods are against me. Why oh why did I have to have to loose power and not get my tiny break? I needed tonight so badly! And the worse part is hubby doesn't even care .....but why should he? It is me that plays 24 hour nursemaid - me that never gets two seconds to herself. So tired i just want to crawl into bed and never get out again.
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TryingToCope, I hope you can reschedule. Then you will have something to look forward to in the future. I'm just sorry it won't be your anniversary anymore. 22 years and counting. Happy anniversary!
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Jessebelle I called the nurse monitoring her vitals. And asked why does she keep calling when moms heart rate is 115. I keep asking her what am I supposed to do about it. She never tells me my sis called and yelled at them and they called me and said they will reset the heart rate to only alert them if it's over 115. They are so frustrating. Her 02 stats are good. Thanks
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Does she have a pacemaker? I wondered about the resetting her heart rate.
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Or does she have afib where they stop then restart the heart? You probably have it written somewhere, but I can't find it.
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herbalizer - thanks for the info. Yes, I'm sure part of it is a control issue, but more of it is just that she doesn't WANT to do anything because she is in the early stages of dementia and just forgets that she has to go until it's too late, and she takes offense to me telling her to go to the bathroom, shower, etc when she doesn't want to. Her response in the past when I've asked her why just getting up to go to the bathroom on a regular basis is such an issue? "Because I'm LAZY, OK?!?" - said with great emphasis on "lazy".

I really think it's more that she simply doesn't care and doesn't want to do these things, and before I moved in, she *wasn't* doing them - wasn't showering, wasn't washing, wasn't wearing incontinence pads, etc. (You can imagine how the house smelled - it's much better now.) She wasn't doing dishes, laundry or housework, either - she made Dad do it all, and he was in a wheelchair. (That's a long story, but I suspect that was her punishment for his past wrongs.) I've been here for over 2 years now, and it's still an issue. I don't expect it to get better - I really think it's just part of the dementia issue. It will only get worse. All I can do is roll with it. Some days are just worse than others. Yesterday wasn't too bad. Today...well, not so great. At the very least, she didn't fight me on the shower - she even let me hose off her bottom with the hand-held shower. I set it on the hard spray setting and let her have it, which made her giggle, and I teased her about it being a super-powered bidet. LOL (You gotta laugh at these things....)
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Seems this should be the "catch all" thread. Doesn't matter what the topic is as it varies page by page, someone always has a great answer, thought or advice. Love it. One thing for sure, not one suit fits every person. Darn.

As I sit here reading, listening to mom asking me for the hundredth time, to please take her home, got me wondering or pondering once again, what in the hell am I going to do after this? My floor is cluttered with tree decorations...we've been working on it for 2 days now, but... no spirit. Downsizing. I have no need for 3 tubs of decorations. No need for many of this stuff anymore. I am a giver... so I shall do my best to give a lot of this stuff away. My belongings as well as my parent's. They don't need or want it ... Dad isn't here... why am I hanging onto this stuff? Dad used to love to pull out his odd and unusual finds.... we, as kids loved it. Now it seems to be ... too much :( I hope dad understands. Time for change.

Susan, those bathroom rituals are going to get worse. Dementia peeps "forget" basic training. Tissue? Wipe my butt? Sadly that, in my experience was the first to go. This is going to sound a bit crude BUT ( no pun intended) you have a cat, right?...dog?... they don't wipe their butt's and we accept them, cuddle them and they sleep in our bed. Gross, right? My p/t carer is getting mom a "heated" baby butt wipe contraption for Christmas. She won't use it, but I will (for her). Guess I'm saying... pick those battles now, they do get worse. As they get older they don't need to shower as often... thin skin, non sweating and so on... not to mention the dreaded cold/flu!

I'm babbling... wishing she would get sleepy, she won't... my fault, I let her snooze since she wasn't feeling well. Sigh. Wahhh.... small pity party :(

I wish I knew just where the hell she wanted to go... God knows I'd take her. Alas, she just marches on with her own infinite pacing abilities that leave me gobsmacked. Bless her heart. Guess me and the pooches will curl up on the couch and keep her company? wahhh...

Ohhhhhhhhhh..........yes, back to downsizing. My New Year's resolution.
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Thanks Jessiebelle was having a brief pitty party last night - hate when I get that way but sometimes I just feel like I am going to scream if I don't get out of this house. The three of us (mom, hubby and I) are here around the clock and it gets so claustrophobic I cant stand it. Hubby and I have always been self-employed from home so I am somewhat used to the isolation but before mom moved in I got out on a regular basis - now my outings are scarce. We live in an extremely rural area in the mountains with rough winters and the thought of the months to come make me feel like I am being buried alive. Sigh - today is another day and although I will not get out - praying for a better day and no more power issues.
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I guess I need to take a break from here...I feel like I'm complaining too much.
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We all do a lot of complaining on here, so don't worry, Susan. My complaint of the day is that Mom decided to go with me to my niece's wedding after she said she didn't want to go. It's about 1.5 hours away. I had this vision of jumping in the car, going, and maybe even enjoying myself. Now the yoke is back around my neck. No matter how much we do it, it is still hard to travel with someone who has mobility and incontinence problems. I wouldn't tell her she can't go, but it did throw a big old soggy wet blanket over the day. She'll chatter the whole way back, which really gets on my nerves when I'm driving. I don't like city driving at all. I'm a small town girl at heart.
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Sometimes I feel like that George Strait song, "I Hate Everything." My rabbit was sick this morning, too. He's feeling better now, thank goodness. I was starting to feel like God was really being bad to me.
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I'd just like to remind Jeanette that "downsizing" to you might mean, "OMG.. here she comes with more junk!" to everyone around you. I brought bags of things to my children's homes and told them to feel free to dispose of them if they chose to.. even just stand them on the sidewalk for the trashman, but I did want to give them a chance to keep things that I thought might be of value to them, sentimental or otherwise. My daughter did hang an oil painting of a ballerina in my granddaughter's bedroom. Who knew it meant so much to her? Don't be offended if they throw things away... just be thankful that a decision was made about "all that stuff" by other family members and not just by you.
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I'm on a complaining role this morning. You know you're tired of caregiving when you see these upbeat messages about the nice things we can do for our elders, and all you can say is, "Oh, bite me."
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I'm with you on that one, Jessie. If I hear one more relative say, "Oh, taking care of Mom must be so hard on you. You're such a good person to do this. I'll pray for you." or one more chirpy, happy post by relatives on Facebook saying how much fun they're going to have going out Christmas shopping with friends today - I'm going to reach through the phone and/or computer and strangle them.

Also on the "hating everything" today. I'm sure I'll be fine by tomorrow, but today - not on your life. I have a list of things I need to do as long as my arm and not one of them includes anything for ME. Am I having a pity party? Yes, I probably am, but at the moment, I don't care. I know I put myself in this caregiving position with Mom - but it's who I am - if something needs to be done, I jump in and do it, regardless of the sh*tstorm it causes in my own life. I've always been this way. Some days I wish to God I could be as selfish and self-serving as some of my relatives and just drop by now and then to visit Mom and not have to worry about her bathroom needs, her dirty laundry, her meals, cleaning up after her, reminding her to put on an incontinence pad - and now, a new thing - HOW to put on clothes and in what order. It must be nice to have the luxury of just going where you want, when you want, not having to worry about whether or not you'll find Mom on the floor when you get back from a quick trip to the store!

Sorry folks. I'm not a happy person today. I appreciate the listening ear and forgive me for complaining so much. It's just getting to me lately.
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I hear ya, sister caregiver.
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There is nothing wrong with having a good, full-on grouch. Especially not when it's the kind of day when your rubber gloves have fallen into the sink and got water inside, you stub your toe, and while you're hopping around cursing you bang your head on the cupboard door you left open…

Of course in the olden days, with that sort of day, you could just think bugger it I'm going to the pub. What do we do now? Remind ourselves that tomorrow is another day..?
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Exactly, CM....tomorrow is another day...full of the same! That's what's depressing and hard to take sometimes. I could be Pollyanna and Annie all rolled up into one and sing, "The Sun'll Come Out Tomorrow" and say, "Let's play the GLAD game!"...but I'm sorry, I just don't have it in me today. Most days I can pull myself out of the doldrums but those days are kind of running together lately. Like I said, I'm sure I'll be fine by tomorrow, but I need to do some serious housework or cooking to get myself out of this slump. It always makes me feel better to see the house clean and everything in order, and to try some new recipes or do some food prep to make the next week easier.
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awork, hehe, no, I don't want to turn into the bag lady dropping off stuff. It all just needs re-organized or boxed up. Clutter in the house makes my head feel cluttered. My brothers pretty much took what they wanted already. Before my dad passed, when they'd stop by to visit, they would come through the garage and as they left, they'd snatch things and slither out. Dad was too tired to get up and walk them out so he really never knew. Anyway, I have grand idea's in my head.... one day I might just let em out :)

Susan, those FB posts are the worst! It's like a code or something... one must always post happy cheerful fa la la thoughts and actions! I know this sounds awful of me, but I deleted and blocked all my family members aside from my son. I could care less what they're doing and the fun they're having... it was making me seethe inside and I'd rather not hate on them forever so *Poof* begone. I hope the grouchies subside for you Susan...it is perfectly normal and understandable tho and probably good for the soul :) of course, so would punching someone but... lesser of two evils eh?

An old work friend was having a "FB Make-up Party"... yep, a facebook virtual party is the only party I can attend these days... anywho, I ended up buying a few items knowing that I rarely wear make up anymore!! Good grief...

Hope you had a good time at the wedding Jess..hope the drive home wasn't too bad either and your momma didn't end up in the trunk and you blasting George Straight! haha, love that entire CD!!

CM, if we where to say "oh bugger this" and go to the pub and remind ourselves that tomorrow is another day, does this mean we get to go to the pub twice??
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I'm all for going to the pub twice tonight!
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i can tell you guys whats possibly keeping all of you ill . with the stress in your lives and sleeping with one ear open , your not reaching the deep freeze zone of sleeping and light sleep does not rejuvinate you at all . ive been ill with depression and tension ever since the colonoscopy . the dam VERSED they give you skews the gabba levels in the brain . i wiped out after only 3 hrs of work today from lack of energy . came home , got pissed and ate 2 zans and hit that deep sleep zone for only 3 hrs . i just woke up feeling like a newborn . maybe thats what kept me from breaking during the year of end of life care for mom . bout twice a week id hit the everclear and hit that deep freeze sleep zone . i could still be woken up but not at the drop of a pin like usual . the deep freeze is where the real organ cleaning and rejuvination happens . im not recommending booze or zans to knock people out , im just stating that you must hit one particular level of the sleep cycle or toxins build up in your body and you get weaker and sicker every day .
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Yaaaay SusanA43
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I may have said that incorrectly mom dies nit have a pacemaker the hospital installed an iPad and I take moms vitals every morning and the see them they said they were going to set the monitoring to only call me when moms heart rate is over 115. Crazy all the stuff there is now
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Does not
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Fligirl - I hope they can get your mom's heart rate worked out.

Cap, I think you're right - it's a constant barrage of demands, working 60+ hours every week for my clients plus the time I spend doing things for Mom, trying to keep up with the housework and laundry (which seems to be breeding and multiplying moment by moment - I swear, the laundry is like rabbits here), and then trying to get some sleep while "hearing" every move she makes all night long...the only way I get any deep - REALLY DEEP sleep - is to drug myself somehow, either with a sleep aid, nyquil or a strong rum n' coke. (And oh my gosh I must need one now, because I seriously typed that wrong and made myself burst out laughing. Mom's looking at me like I'm nuts. Exchange the "c" and the "r"...that's what I just typed. I think I shall call my drinks that from now on. LOL)

I did sneak out for a bit tonight to get groceries, and that must be what I needed - I feel a LOT better than I did earlier today. I think I just needed a break, however small it might be.
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