The Caregiver... How are YOU doing today?

Ok my friend and I have been trying to explain to my husband he needs to see the heurologist and do a video eeg because someone said he has psuedo seizures ...had round 2 and he starts projecting a guilt trip on me. I am looking after his well being. I am tired of being accused that i am trying to put him in a NH and hell if the neuro pushes for video eeg and sees his seizure disorder for real than he can get help...real help but know its all about the torture and the torment he is going to go thru vs what i have already done or try to do for him. on another note after i got off the clock went and had a mini vacation at the bar with my best friend from HS and we had a blast...had margita and couple of tequila sunrises...any requests:)

Stormy, sorry you are going through so much with your dad's health. Two liters of fluids is a lot for when they drawn out one on me I notice that I could breathe a bit better. I know he had to feel miserable too. I hope his test about the fluid turn out okay. I hope he feels a bit better being he is back home.
Don't forget to take care of yourself too.

Rough day for some...ditto to everything Vic said to everyone.
Ladee-LOVE the prayer ribbons. Thanks for adding us. Hugs.
Hubby's home. I am happy. But tired, as always. Not enough energy to run away, much less make it back. LOL
Goodnight, and better tomorrows.

And Seeme-many, many prayers to you, with lots of hugs. Your hubby, too.

Thanks lil' deb. Dad is feeling better since they removed the fluid. The dr did say that he was starting to get some more fluid since he removed the 2 liters but it was not that much. And 2 liters is alot, it is more than what he had last time that they done the thorancentisis. Just wondering what the results will show from the fluid. We will find out wednesday. Thank you for thinking of me. I am doing ok. Love and hugs to you!!!!
Notlike- Cow pattie!!!! Congratulations.... Love and hugs to you. Stormyyy

Lildeb: I just want to say how amazing I think you are. You have so many health issues of your own, transplant being just one. You never use your health issues, which are very real and serious, as a reason to turn your MIL away. You just keep doing for others and you use the kindness of your heart in all ways. If you feel little knobby bumps around your shoulder blades, don't be alarmed. It's just your angel wings trying to pop through.

Hey everyone: Vic, Stormy, Beck, bless you and stay well. Seeme, take good care of yourself and your hubby. Sorry for all of your losses.

Ladee, take care and I'm hoping the best for that boy of yours..

Love, Cattails.

Hey all.....wow see lots of new posters here. it's been a while since ive been on and I have so much to share so please bear with me. I was feeling esspecially burnt out a few weeks ago, so I decided I would take a break from the site, fb all computer related stuff to focus on the kids, house, auntie...( I have a tendancy to get glued to the comp. for hours). School was fixing to get out and as many of you know I had a crazy summer last summer trying to deal with the kids, auntie all of it. I had a good long cry one night wondering how I was gonna go through another summer. Some may remember we had plans to get away and go on a little mini vaca, I was devided on the decision to bring along my charge or find a sitter. She said she wanted to go, even asking us to go soon so it didnt get to hot. Then a couple days later looks at me and says she dosnt know a thing about it, this is the first shes heard. Followed by yes shed go. Then finally we made arrangments to go soon and found someone to "house sit" aka caregive so we could go. Well last weekend auntie started not feeling well, started vomiting again(weve been dealing with this on and off since winter). That night she woke up saying she was freezing, so we put warm pjs on her. The next day she started feeling worse, but didnt want to go to the hospital, said she would wait for her appt. scheduled for tues. By that afternoon she said she felt better. Something still wasnt right. I knew after she told me that her back hurt(the quickly said no it didnt) I thought maybe she was getting a kidney infection, but chose to not force the issue(she hates the hospital and didnt want to go), after all, maybe she just just had a little tummy bug. Besides she did have an appt. 1st thing tues. morning, i would ask them to take a urine sample. Then if she had one they could prescribe a little antibiotic and wed be good to go right? Sunday morning she still said she felt a little better, I was so tired from being up so much in the night for the last two nights(her and I were afraid she might have another fall so i was assisting her the the bathroom), we had company as well on sat. had done the whole memorial bar-b-Q thing. Sunday afternoon she hollard via baby monitor for me to come to her room, she was already crawling into bed when I got in there. Said she wanted to lay down(first time in almost 2 years for this request in the middle of the day) So I tucked her in. She told me to wake her up in an hour or two. So hubbby kids and I went swimming to give her some quiet. a couple hours later, we no sooner go back into the house, she calls for me on the monitor. I head that way and shes coming out of her room not fully dressed, and i help her to her chair, she tells me she feels aweful, she felt warm, so i took her temp, 99.1 blood pressure high as usual,i ask if shes hurting she says yes her back hurts, tells me it hurts up high, then says but not that bad,I then worry she is having a heart attack, tell her she has 2 choices go to the hospital, or take some tylenol. She wants neither, but tells me shes not felt this bad in a long time, i ask her to smile for me, she cant do it, her stroke affected side went up higher than the other, I say if you feel that bad are you sure you dont want to go? she says she dosnt know. I said well maybe they can make you feel better, i told her we could call fil up and talk about it, she says ok. It took fil 10 min to get up there, by that time she just kept saying ok ok ok ok over and over again. fil gets his car, on the way there, she keeps falling asleep, by the time we get to the hospital, she is totally confused, just mumbles when asked where she is at. They quickly diagnose her with, UTI, immedialty start i.v antibiotics and tell me its so very common. Not to worry she would be back to herself in no time. her temp was 100.8. They gave her some tylenol and she quickly started coming around, talking again,as her temp begin to fall back down. still a little confused but pleasant and talking, giving us instructions for her cat ect. ect. we waited to she got settled to come home. Monday, I spoke with her on the phone, she sounded better so i told her we would stay home that day and see her on tues. Monday night fil goes take her some things, I speak with nurse who tells me the doctor says she has a very Nasty uti, and its in her blood stream. Tuesday we go see her, she is confused again, stripping off her cloths, trying to take out her catheter, cursing. They told me this was normal, and she should return to normal once she gets better. nurse tells me its called urosepstis, it can be serious, she just coded one the night before, but looking at auntie she dosnt appear to be that bad. says most of them become confused and septic before they even know they have an infection.Its so common she says. Wend. go to see her, she wakes up and starts telling us about a realitive who died 32 years ago, saying he needs to move his A$$ hes in her way. Nurse says shes had a bad night, congestive heart failure, 02 dropping, they have her on oxegen mask, giving her breathing treatments. Again, im told that happens, it just takes a while, to get over uti and she does have a nasty one. They were giving her lasix. She seemed to be stable and resting not talking to much more, we go home to let her rest. Thurs. We go to see her. Shes talking even less. Barely wakes up, only when i speak to her. I set and hold her hand for a while. Trying to understand why she looks so frail if she is getting better, again im told, sometimes this takes a while, she has a nasty infection. It takes em a week sometimes to get better. Today, i needed to stay home, fil goes up by himself. He says, she looks the same, only woke up once, then went back to moaning, and sleeping. Nurse tells him, she will give her another pain pill as soon as she can. changes the antibiotics out. I was contacted this eve, by pallative care, they dont think she is gonna make it. wants to know if we want hospice, wants to know if we want nursing home. I say im not doing anything without talking to the doctor. I get a call from him. He says, the infection is clearing up but her condition is deteriorating. He says, he thinks she is in the dying process. The medicine to clear the infection has taken a toll on her body. He says honestly he has thought for a few months now, that she has been in the process of dying. Says thats why they have been taking a less aggressive approch with her. (guess they tried to tell me that). At my request he is going to let her go through the treatments(antibiotics, respritory support, meds to drain the fluid) for the rest of today and tonight and wait till tommarrow after he asseses her one more time before he orders the hospice. If she continues to decline, he will order it. If he sees improvment we will see what happens. ...Guys im just sick over this...sick with guilt that i didnt make her go to the hospital sooner, sick over the thoughts ive had during times of burnout the last couple years. including this weekend, while extremely fatigued wondering how much longer this caregiving stuff will last, and what am I gonna do when the real tuff stuff comes along...guilty for my thouhts yesterday wondering what she would be like when she comes home, hoping she would stay at least a week in rehab oh how nice i thought that would be to get a little break. Maybe just a smidge of relief that i can see the light at the end of the caregiving tunnel, but oh my what will it be like getting there? More guilt for that smidgen of relief. Followed by shock that it happened this way. This quick...with an infection? I pictured a couple years of decline with her dementia.Or a heart attack or stroke. How could this happen? Now? Doc says miraculous things do happen, but his prognosis is she wont survive this. I tried earlier to snap myself out of the tears, try and get some sleep, make tenative plans in case miraculous dosnt happen. But her I sit at 2 a.m. Why am I telling a bunch of strangers this? cause some have been my only true friends through this. I also want other people to see what, im going through. whitin a few hours of finding out the person ive been caring for appears to be passing on. Ive decided for sure to care for her during her last hours, days, or weeks here at home. I promised her I wouldnt make her live in a nursing home, im not gonna let her die in one either if I can help it. I will give another update tomarrow. im gonna try to force myself to get some sleep. I have a feeling im gonna need it.

Aweee ASG..so sorry. Understand about the UTI's .. Dad just got over one and the only way I know when he starts getting more out of it. Know I will be feeling the same things you are..guilt relief guilt guilt guilt. You auntie and family are in my prayers...

ASG....been wondering what is up with you. You are so in my thoughts and prayers.

im frustrated... its been a year and a half since my mother passed away and i have begun taking care of my father. I am the only child and family doesnt live close. I am married and my husband for the most part wants nothing to do with my father due to a conversation they had a while back that left him (my husband) offended and insulted. Anytime the conversation of my father even comes up its an instant arguement. I feel torn between the two.

ASG, all of us feel guilt about the 'what ifs", I did the same thing when Ruth died... why didn't i push that RN to do a test for UTI, and that is what wore Ruth out in the end... a UTI.. she was in the NH at the time, surrounded by medical staff, and they were treating her for behaviour, not the UTI... so I really do understand how you are feeling...but I do want to say, you would be feeling these feelings regardless of what ends her life.... things said, not said, done, not done, wishes... it all comes rushing back when we are faced with what you are... but please consider pallative care.... you can still be with her, but it will be so much more comfortable for her in the end... she will have 24/7 ,medical care. pain managment, and that doesn't mean you have broken your promise,,, think about what is best for her, what will cause the least amount of pain, the least amount of suffering.... where doesn't matter, being with those that love her is the most important thing right now.. and ya'll will be allowed to stay.... and please think about the kids.... please don't let this be a memory for them.... of her passing in their home... I know you have many to think about in this situation.....but I''m sure the kids have thought, if not said, some of the same things you have.... they have guilt too... please please please consider pallative care.... stay with her.... let her go in as little pain as possible....that is the most loving thing in the end, not where it happens, but who is with her when it does.... Jam , seeme and I have been wondering where you were... I am so sorry Tina, so very sorry... know you are in my prayers... and please come back and let us know what is going on....sending you hugs and angels...

Good Morning Angels! Reading everyone's posts and getting caught up. My heart breaks for so many of you.....I wish I could help to ease your pain. When we sign on for this care giving job most don't know what the end of that job will come to and it's not always easy. I think it's harder, in most instances, on the care giver and not the loved one.
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." -2 Corinthians 4:16-18
ASG......sending prayers to you while you enter and go through this stage of your care giving. Please try to not be so hard on yourself.....most people don't enter the final stages knowing exactly what is happening and how to make the right decisions on what to do. And when it's your own loved one that makes it so much harder. Now would be the best time to have hospice come in and take over the "hands on" care of Auntie and allow you to free your mind to be with her in her last days. Confer with them to see if it's possible to bring Auntie home and what her care will entail. We all have visions of our loved one being in their home, in their own bed, surrounded by family and peacefully going to sleep.....but it doesn't always happen that way. Once the body has gone septic, it is virtually impossible to bounce back from that, although miracles do happen as the doctor said. My thoughts and prayers are with you.........love ya!

It will take me a couple of posts to catch up with everyone and will address each of you.........thinking of you all today!

The col is doing the same....every other day she is going to show us how well she can get out of her chair and walk. If only she could.......
Target is still having problems with his legs....night before last he tripped over the area rug in the living room and fell.....fractured ribs on the right side of his chest. The same ones he has fractured 3 times before......it's bubble wrap for him!

Love and Hugz to all!

Huggs, the first thing that came to mind was for you to get quiet and see what YOU want to do... this may take some time as you have two people you love not getting along.... the most important feelings here are YOURS..... It's ok for your husband to not like your dad, it's not ok for him to try and make you choose... so the important thing here is that YOU do the choosing, is it possible for dad to be in a NH or AL? Of course you will still have to do some hands on caregiving even in those situations....You can't make everyone happy and it's not your job anyway, we are responsible for our own happiness and that includes your hubby.... do what your heart tells you to do... either way, we are here for you... you don't have to make that decision today, give it some time.... others will reply to you as well, get some feedback and then start trying to see what YOU want to do.... sending you hugs and prayers for the best outcome for YOU....

ASG, I think she knows it is time for her. That's why she gave you instructions on the cat. There is a dying process, and looking back, I can see my mil was in the process also. Please let her go peacefully. You can't fix old age. I agree with Ladee that it doesn't matter where she dies, just that she knows you care. Tell her about the UTI and sepsis and that you give her permission to die and be at peace. I am so sad for you, but you did a good job and managed to keep sane. The guilt feelings won't change anything. You aren't a doctor. And you did not cause the UTI....and you can't prevent her death. Just do your loving thing and it will work out. Hugs to you and yours..................

omg here he goes complaining again and again...wth did my husband wake up on the wrong side of the bed or something. Ever since we move to this trailer and taking care of fire hazard issues. He just woke up just now ...i am tired of it and he is paranoid ...even worse since he went cold turkey off his zoloft. I am trying to be in a good mood and he is making it rough for me...someone give me a vacation when he goes for the video eeg that is my freaking vacation nearly 50 yrs and all he can talk about is himself. I am trying to be patient and helping my friends at the same time. everything is freaking issue with him...tg its the wknd.

LOOKING AT NURSING HOME FOR MY MOM ON MONDAY HER ALZHIEMER'S HAS GOTTEN WORSE I TOOK 4 MONTH LEAVE FROM WORK AND WILL RETURN JULY 2ND SO THIS NEEDS TO HAPPEN FAST!!! ANY ADVISE???

Yes, I am burned out to the max. Sick and tired of this whole thing. I have been with Mom for 3 years now. The past year we moved in together, worst mistake of my life. We have tried home health aides, who my mother always ends up criticizing and arguing with. She loves to use her walker as a weapon. She has seen two neurologists and two psychiatrists. She is taking more meds now, which has calmed her down. I lost my job because I was called when she had an outburst with a home health aid. Had to come running home to refuree the fight. I am looking for a new job now and hoping to get my mom into an assited living place with extra care. The only problem is that the one I found is miles away. I know that she will not survive without family close by. Yes, I also have a brother and sister who don't do anything to help, not even call her on her birthday. I feel like I got myself in to something terrible and it will never go away. My dogs are even suffering when she screams. I am so tired and am running low on money. I have to have a life of my own, per the neurologist who thought the best thing to do was keep my mom medicated to the max, so I could be well. Just last night and about every night, she insults me, calls me skinny and ugly, and a bunch of other things I can't mention. I feel for all the people on this forum, really feel for them. I am giving up the home care aids next month, which are worth nothing to me, and hoping my mom likes this assisted living. However, I truly doubt it. My most peaceful time is after I give her the Ambien and she falls asleep. I say thank G. She is according to the MME, has mod Alz.

I found an affordable place in Fort Lauderdale with a lot of activities and assistance for an extra $940 per month. Escort to meals, activities, medication management, nurse to check on my mon every two hours. Heated pool (mom still loves to swim). The problem is the two trips going down there and what if she doesn't like it? I'm searching for more Assisted living places now close by, but they all seem to be in the range of 5 grand and up, not including the extra care. The place in FL said my mother could be in the assisted living apartment and not the memory. I could never ever leave her in a memory unit. It would kill me and I'm sure her. She has a fairly decent income and is getting a little more from the VA (dad was a vet). It's called Aide and Attendance or something like that. The neurologist is filling his part out now and then I will send it in.

He doesnt like the idea having a video eeg done to get his seizures declared real not fake..and i do have friends helping me out while i am helping them out and now he is ticked off that i ordered a prepaid phone for my daughter for emergency...my friend and I from middle school who is here helping them until they get their own place and they are gonna be living here for a good while once they get settled in their own place but no its my money using to get this phone...i am trying to relax here and do my thing ...i love the babies ...especially their son he is a cool slice of heaven:) well peace for now.

Asg- I am so sorry to hear about your aunt and her decline with the uti. I never realized so many elderly people get those kinds of infections. I understand where you are coming from with wanting to take her home and finish the job of taking care of her until the end. I have thought that very same thing with dad if something were to happen to him. It's like you're saying to yourself or i am, "Well I've come this far and i am going to finish it til the end". Me and sis have been the only ones caring for dad and i know that he would not want to go anywhere or have anyone else take care of him, but if it came down to him suffering we would call someone (hospice) in. Or i would. I think sis would still have a hard time dealing with letting someone else help him. Bring her home but let someone come in and help her and you. Spend some quality time with her without having to worry about all the other stuff that comes with caregiving (bathing, meds, cleaning etc) . But i do understand how you feel. And my prayers are with you and your auntie. My love and hugs to you. Please keep us informed of what is going on. Love you. Stormyyy

ASG: My heart goes out to you and your sweet auntie. Please don't beat yourself up. You have given her so much love and good care. Many have given you suggestions about bringing your Auntie home or not. I just want to add something to the discussion. Most of us would say that we prefer to die in our own homes. I think what we mean when we say that is that we don't want to live for years in a nursing home. We hope that we can pass peacefully in our sleep and avoid a long lingering illness. I don't think it means that if we are at the end, we want to be moved back to our home for the final hours. When the end is at hand, then we just want to be in as little pain as possible and have the comfort of those we love close by. It really doesn't matter where we are, the exact bed we are sleeping in, or the decor of the room If we have a lucid moment, it will be a comfort to see the face of our loved one(s). If we can't open our eyes, it will be a comfort to hear the voices of our loved ones telling us how important we have been in their lives and promising to meet us again in a better place.

I realize there is that personal goal to have them pass at home, but if she is comfortable and well cared for, I'm not sure it is necessary. You will know more as things progress. I am sending you love and wishing you comfort. Cattails

Tomorrow will hubby & I 17th anniversary n been together over 19 yrs. We have it set-up that the Neice will keep mnl for a few hours so we can go see a movie called, "Snow White." Boy has it been awhile since we got out of the house together by ourselves n to watch a movie.

ASG-peace and prayers to you. Hugs.
lildeb-Happy Anniversary! Enjoy the movie. Hugs.
I guess I won the cowpattie a while back...Yipee!
Today was not the best or worst day. Just a normal day in my little world. Hubby re-routed the garden hose to make it easier for them to water. He got kudos up the wazoo from Mom. I made dinner without thanks, but at least she liked it. I tried to make a joke about my sister not being able to cook, and all I got was "That's because I did all the cooking" and a bewildered look as to why my sis and I never seemed to learn any home ec skills when we were young. Like it's our fault for not liking what she likes. I also bought the wrong onions. Q: If two people buy sweet vadaila onions in two different stores, why is one better than another? A: Because one person pays more so that means it is better quality. I also haven't helped her fill out her new doctor forms yet, and on and on. Ah, life.
Sorry, just a bit of complaining there. All in all, it really wasn't a bad day. Hope everyone finds a moment of peace, and sleeps well tonight.

Notlike: Your comment about the onions just struck a memory with me. Totally different subject, but a funny quote. Here it is: If a man speaks in the woods and there is no woman to hear him, is he still wrong.

Just a light thought for the end of the evening.

Love to all of you amazing care givers. Cattails

maybe its just me but it's difficult keeping up with all the activity i'm following(or trying to follow) on this site. 3days later i find my name mentioned in posts i somehow missed. i guess like everything else, i have to figure out & learn how this site works and how to catch up on things.

anyways.... thank you all for congratulating my daughter. graduation night did not end "as planned" and what was suppose to have been a night of celebration for all the graduates turned into a night of disappointment for so many people, including my daughter. grad night was cancelled because there weren't enough buses to transport the seniors to magic mountain. they made the announcement right after the ceremony ended and just before the fireworks began. i am still upset about this but obviously there isn't anything anyone can do to make up for this.

as for my niece and nephew... they will be staying with me & gramma for the rest of the summer. my mom(who lives next door) has too many "issues" going on in her life and she's taking it out on everyone around her, including the kids.
they told me they were hungry after we got back from graduation and since they were staying with my mom, i told her and in front of them she says "they can eat cereal because i'm not cooking" my nephew looked down & says to me "that's all we've been eating tia" i picked up burgers and sent them next door.
the following day gma & i pulled up after being gone a couple hours and my niece & nephew come over. we're not even out of the car and they tell me my mom yelled at them because my brother & his girlfriend ate something my mom bought and what ever was left in the package she marked "DON'T TOUCH"
tonight they both showed up crying and said my mom's dog ate food she left on the kitchen counter and after beating the dog with a stick in front of them she yelled at them about the blankiddy blank dog.
so....long story short, i got my 12yr old niece in my bed, my 17yr old in my bed, my cat also in my bed, my 14yr old nephew on the couch in the living room, gma asleep in HER bed and me??? its 330am, my eyes are burning and i think i'm just gonna throw myself on top of both these kids(on my bed) because eventually ONE of them will move!!

as long as i remind myself to BREATHE... i will somehow get through all this!!!


have a good night everyone & thank you for "leaving the light on for me"

Good Morning Sam! Sounds like you and the rest of your family are having a tough time.....I'm sorry graduation plans didn't turn out the way everyone thought. Someone didn't count noses to see how many bus seats were needed........................the notifications from this site don't come through like they used to. They did some "improvements" and instead of sending us an email each time there is a response to a thread we follow, now there may be 20 responses out there......you didn't really "miss" anything, it's just the way we are now notified.
Is Gramma on medications for her behavior? She is a handful. It's never okay to abuse children unless they are heathens....lol.........but to beat the dog? There are dog lovers here who will take exception to that. Gramma left the food out afterall and apparently the dog was hungry. If Gramma's irrational behavior continues and her issues are not addressed, it's going to be a long summer for the niece and nephew. And you too for that matter! Hugs to you and I hope you have gotten some sleep.............keeping you in my thoughts!
notlike.....would you send hubby here to reroute my garden hose? I'm tired of dragging it across the yard....:)
I don't thing I went back and welcomed our new posters...glad to see you here and hope you find something here to help you in your care giving journey.

Yesterday afternoon the col called and this time was very pushy and adamant about coming home. I finally heard Target telling her "I am not your doctor....I am your son and I can't fix you".......she is still fixated on the fact that since he's a doctor he shouldn't have any problems fixing her. But then turns around and says there is nothing wrong with her, she can walk just fine.........HATE DEMENTIA. And while on the phone she pops up and says "Galmey just got here".......that was her GREAT AUNT and the col is almost 88 yrs old! Oh my..........................
Be on the look-out for the cleaning fairy..........she showed up at my house yesterday and wouldn't leave until the place was clean....she wears me out sometimes! Told her not to come back for a while.....:)

Hope you all have a very pleasant and peaceful Sunday.....supposed to storm very nastily here................love and hugz to all!

lildeb......HAPPY ANNIVERSARY to you and hubby!!!!!!

gmandsam, sorry to hear your daughters night was not what all it could have been... but did she get to go somewhere afterward.... that is such a special night, and know you were very proud seeing her walk across that stage....hope you got lots of pics...
Sorry your mom has 'issues', hope someone reports her for beating the dog.. as Jam said, many animal lovers on here.... not happy about that, take the dog too....\
I am sorry you will have everyone at your house, but guess you will have to figure out a way to make it fun for them.... a huge camp out...at Aunties!!!!!
And yes it takes time to learn this sight, but you will, just hang in here and keep posting... if nothing else put this sight on FAVORITES and go right to it and then scroll and read... that's what I do now...hope your day gets better and you found a place to lay your tired head....
Happy Anniversary lildeb... hope you have a good time... let us know what hubby gave you for your present....
Bilmo, I have a friend LIVING with AIDS , not funny!!!!!!!!
hope everyone has a good day, and if the cleaning fairy shows up here, I hope she is ready to work..... hugs across the miles....

I think I would had told the 'gamma' off!!! Tha nks you gals for we are going to try n enjoy our few hours for it has been a very long time since we been alone.

Whooo hoooo lildeb, have fun.....