The Caregiver... How are YOU doing today?

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.

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.

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.

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???

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.

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..................

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....

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!

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...

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

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...

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.

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.

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

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

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.

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:)

Vic, we have an appt with Dr. Monday to have the staples taken out of his arm, so hopefully they will know something by then... he did ok, but got a wheel chair when we got there, easier....
we did have to set there for over two and half hours and he was hurting by the time they got to him.... I was the one getting impatient... I don't know, maybe that wreck knocked some nice into him.... not complaining tho...
Did want to share with ya'll, in the hospital , on the wall , was this huge net with cloth bows on it.... after got son settled I went back to see what it was... It was called a Prayer Net...on a little table there was an explanation about what it was, a basket with strips of cloth..... and you could tie a bow on the net and say a prayer... I put three, one for my son, one for all of you on AC and one for me...See I do think of ya'll all the time....
Wanda, we just learn to cry where we are, saves the energy of running and returning.... I am sorry things are so overwhelming for you. but we do understand, on any given day you will read about any one of us wanting to run away....but we don't.... even in Brandy's case, she left out of choice, she didn't run away......so come back and visit... we'll be here...
thanks vickie vic, I'll tell him you asked about him.... hugs across the miles to you all..

Wanda..love it..run away and turn right back around! Feel the same way! So frustrating some times.
Ladee did you guys get any news about MRI? Prob not but hope the journey to and for wasn't too bad for son.
Zaniness agree with Ladee...what a champ your mom is! Feel the same about my dad..I just try to make his days as pleasant as possible.
Brandy.. You did thebest thing for you

Hi Jam, I know just how bpryor01 feels. I just left the VA Medical center herein Atlanta with my husband. Every time I leave that place every time with a headache. My husband had 3 strokes in 05 . He has frontal Dementia and ALZ. He also has seizure disorder. Now they think he has a heart problem. They also want to do sleep testing. Then he wants to sit there and argue about what I tell the Psy. Then she wants to adjust his medications. Why can't they leave well enough alone. If it aint broke don't fix it.
Times like this I just want to scream and run away. But then I would just have to turn around and come home (LOL) might as well try to laugh about it otherwise I would have to cry and there's been enough of the crying for both of us. Thanks for letting me vent. Wanda B.

Zannie, sorry things are so hard for your mom and for you to have to see it.... but how awesome that she is trying, apparently she hasn't given up, so try to honor her courage and stamina.... doesn't take your pain away I know, but she is still celebrating life.... in her own way.... hugs to you....

No Brandy, you were not wrong in leaving... she needed to settle down, and you don't deserve to be yelled at.... sorry you sis doesn't see the need for behaviour meds, it's very selfish of her because your mom would have a better quality of life with them.... and if you sis won't agree to the meds then she may need to agree to a paid caregiver to come in on your day.... I'm sorry you are so upset, you didn't do anything but maybe next time when she starts, just walk outside for a little while, then come back in, if it continures,leave..... If she has laienaged everyone, then your sis will either have to agree to the meds or do the job herself... sending you hugs...

I am very upset today, shaking in fact. As you guys might remember, Friday is my day to take care of my mother. She used to be so sweet. So I get in the house and right away she starts yelling, snapping, cussing, me out. I say, take it easy, and put my hands up in surrender. Then she further yells at me and says that I should stop fighting and that I am too sensitive. I tell her she is too harsh and she says she can be harsh in her own home if she wants to, and that is just her nature. Then she says I am too harsh!! All I said was good morning!! And I had tried to put the food away that was on the counter. You'd think I was an ax murderer! So she continues to yell at me and pick up my coat and say I am leaving. She continues to yell at me more and more. She sees that I am serious and then she says "oh for pete's sake she is sorry. By that time I am out the door and in my car.

She is 90 and has dementia and is trying to stay out of the NH. Sister won't let her have an meds for her mood. Sister usually says it is my fault that I can't get along with mom. I wonder if that is true.
Mom has alienated just about everyone. Was I wrong in leaving?

I am just plain sad today. I went to see my Mom early after a night of unrest. I took my ipad and we struggled through some flash cards of pictures of food and she was to say the food. It was very tiring for her. Then bless her heart she sat in her wheelchair and tried to do her leg exercises which are very minimal. We sang a couple of children's songs ......and after less then 15-20 minutes she was exhausted. The simplest thing is so difficult for her. I came home but getting ready to go back and take her some lunch because the food at the skilled nursing facility (one of the better ones in our community) is horrible in my opinion. I can just hardly stand this - and my heart is breaking as I try to be upbeat for my dear sweet Mother. I pray that God give her some peace and take her home - this is no way for her to live.

I am just plain sad today. I went to see my Mom early after a night of unrest. I took my ipad and we struggled through some flash cards of pictures of food and she was to say the food. It was very tiring for her. Then bless her heart she sat in her wheelchair and tried to do her leg exercises which are very minimal. We sang a couple of children's songs ......and after less then 15-20 minutes she was exhausted. The simplest thing is so difficult for her. I came home but getting ready to go back and take her some lunch because the food at the skilled nursing facility (one of the better ones in our community) is horrible in my opinion. I can just hardly stand this - and my heart is breaking as I try to be upbeat for my dear sweet Mother. I pray that God give her some peace and take her home - this is no way for her to live.

Thanks, Ladee. The vultures have already come to land on our doorstep. It was just a matter of time............veiled threats, serious hurt feelings at division of property, things not moving fast enough......it's been barely 3 weeks!!!!! I hate family.......

The wrost of thins at the time was the smell of the place. Got to tell you this woman was a borderline hoarder.......mainly cause she only lived there 6 mos. out of a yr. With more time, she could have stacked things higher. It was 6 days befroe we found the packed box of frozen food she was planning to take to the ALF with her. By then, the raw fish fillets and shrimp had thawed. EEEEEEWWWWWW I literally gagged at that one. Not to mention the moldy carpet from the water leak that happened in April when hubby took her home. Every time I go there I come down with bronchitis from the biohazards I smell. I have to go outside and smoke a cig to get some fresh air!!! Sounds like a contradiction, but I kid you not, smelling and inhaling cig smoke is healthier than the conditions I lived in while there. I'll tell you all more about the stuff I found later..........

Seeme Sue, hope you get time to catch your breath... too much too soon... please take care of yourself.... and give hubby a big hug for me... I know he too is stretched to the limit.... sorry you didn't have more time with your own family....sending you hugs and prayers...

Haven't been here in a while, but I wanted to say thanks for all the well-wishes that were sent my way during the past month. The burial cremony for my parents was touching...TAPS always tears us up.....short, and I managed to sing my mother's favorite rendition of The Lord's Prayer. Hubby got the phone call about his mom's stroke the day before the ceremony and we left for home the day after. We drove from Illinois to NC and then after a 2 and a half hour delay to shower and repack warmer clothes, we headed off to Bangor. ME. We made it in time, and all her children were at her bedside when she passed. Thanks again for your prayers.