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

Jude is the obvious choice for union steward, don't you all think?

Hearing all your stories about E R visits brings back bad memories, I tell ya.

The last visit I made to the E R with Mom turned out to be her last unfortunately.She never made it out of the hospital. But I digress......I remember when the nursing home phoned me to tell me they were rushing her there. The first doctor I spoke to said I think your Mom is passing. Fast forward a couple hours later after my siblings all rushed there thinking this is it. I asked the doctor in question "Do you still say she is going to pass" He says" Who knows, hell I could pass tonight, nobody knows" Oh how sensitive and compassionate of you I was tempted to say.

I'm sorry for you Susan, Shilo, and Hope. Please don't let doctors and the like undermine you. You are all going above and beyond.

Just a thought... this just popped into my mind out of no where.... when it comes to unions, there are pros and cons.... now I am thinking too bad those of use who are free caregivers [either hands-on or logical] that we can't have a union.

A set number of hours for the type of work you are doing as a caregiver. A limit as to how much weight you can lift.... a break for 10 minutes every hour or two.... temperature inside set at 75 or less.

That we are allowed unlimited number of laying our ears back when something isn't going right.... we can get free helmets.... and clean blankets for our forts [those who have been on this forum for some time will understand those requests].

Now, let's vote for our union steward.

Big picture you a**e my Mom is in heart failure. "Now get the IV up and a catheter in and get rid of the fluid. never mind what Mom says didn't you go to medical school?"
Sounds like the one I encountered when my B/P went off the charts and I was checking it every 30 mins before going to the E R. he told me not to take my blood pressure so often!!!!!!!!!!!!!! His only physical examination was to ask me to squeeze his fingers. I actually have rheumatic heart valve disease.
Keep at it Susan never mind what that O2 sat is her lungs are 1/3 full of fluid and her feet look like pillows. So she can walk jolly good show. Send for JUDE! We are right with you.

At ER with Mom....and SO pissed at the ER doc. It's "big picture" these numbers look ok...."big picture" these numbers are pretty stable...."big picture" this and that....then he asked Mom if she had any questions and she said "how soon can I get out of here" -he said he'd go draw up the discharge papers right away. I said, "HOLD IT....." and explained exactly what was going on - that the low O2, fluid increase and struggle to breathe are not normal for her and have just gotten worse over the past couple of days - and suggested they at least TRY calling the cardiologist and talking to him first??? Or the home nurse, who knows the REAL "big picture"?? (Should have seen the face he made when I suggested that he - an MD - call a NURSE to get her opinion...you'd think I'd thrown a dead skunk at him or something.) So he looked at Mom and said, "Oh, I think *someone* was trying to downplay things a bit...." (ya think?!?) So they got Mom up and walked her around the room a bit, and noticed that she was de-saturating on her O2 (down to about 91/90) with activity and said they would call her cardiologist to see what he wanted to do.

So now we wait....

In the not very friendly state we moved to 4 years ago... that is correct...add hospice services, decrease medicaid services. It is also one of the states that opted out of the medicaid expansion program that has left me unable to qualify for medicaid coverage. So if anyone is planning to move just research the state wisely before making any moves.

So you're saying if you get hospice you will lose medicaid benefit? ?? Wow..i didn't know that

Ok..im not an expert about medicaid for sure but hospice is a medicare benefit. If you contact one of the not for profits they should be able to handle all the stuff for you. ..that is how it is here. .Veronica will know more about that i know as will most everyone else on here. .but the hospice folks should be able to guide you.

Thanks Veronica - I'm waiting right now for a call from the home care nurse, who said she was going to call the cardiologist at noon - if I don't hear from her in the next 20 mins, I'm going to call her and find out what's going on - and if I can't reach her, next call is the cardiologist and then a trip to the ER if I can't get the info I need from anyone.

Veronica, Thank you for the suggestion. The physician's nurse recently discussed hospice as a possibility but she said she wasn't sure if my mother would qualify. I checked with medicaid and my mother would have to give up most of her benefits she is receiving (or should be receiving if an aide ever starts working) if she starts hospice service. We have gone through setting up/reinstating medicaid 3 times in this state. It takes too long, is too aggravating and not there when you do actually need the help to give it up if you don't have to. Believe me when I say I have thought long about this. I fear having to go through the "process" again and not being able to deal with it. There have been several times this go around that I have "lost it" and all the medicaid services have not been completely put back in place after 3 months.

Her attitude and minimizing things is not going to make a difference in the end, her symptoms tell the story clear and plane.
Goose the cardiologist she needs to get to the hospital today, this is too hard on her heart. If you have to go through the ER you just may have to do that. They can start the IV and give the Lasix or what ever and will put a catheter in. Call the ambulance don't try and go by car. That way you get her straight onto an exam room and faster treatment. I know it may take hours to get her into a room but she will be being treated and monitored while you wait.
It is your call and I don't know where you are located but don't wait till too late in the day.

Shilo. ..i fought the whole Home Health thing for three years...did it all by myself. ..and i do mean all by myself asNO family helped whatsoever. ..then, at the end of 2013 after Mama had a brief hospital stay due to a fx ankle and i got to a point where i literally thought i was about to check out of this life. ..i remember that day vividly. ..i called the home health folks we had used in the past and was crying and falling apart and they came out and promptly enrolled her in HH...then, after about two weeks, and going back to the hospital due to pneumonia that she apparently got in the hospital from her previous visit, the doctor told us that she needed to be on hospice. I fought it all the way because to me it meant we were giving up...well..fast forward, after going through one hospice provider that was very subpar, or current provider, whom i have had since that time has been a God send. This one is like family and on top of being so good to Mama they are min and sweet to me. I think you should check it out shilo. ..i agree with Veronica that you should qualify. ..and lucky. .i hope you are considering switching providers out at least putting your foot down. .preferably up someone's backside, and telling them to send a nurse with some compassion

Thanks so much, Veronica -

Yes, I agree that Mom needs to go to the hospital - we can't wait much longer. The only thing we are waiting for now is the cardiologist to get back in touch with the homecare nurse to give the order to get her admitted directly so we don't have to go through the ER, like you said.

My concern with the Heimlich on Mom is that: 1) I can get my arms around her, but not sure I could efficiently eject any lodged object in her throat due to her size; and 2) she can't stand for long at all without her legs giving out - so there's a fall risk there too. Hopefully I won't have cause to have to use it on her again.

Mom is one of those folks that constantly covers things up and makes believe everything is fine, even when it's not. I'll ask if she's short of breath and she'll say "No more than normal" - but the last two words come out in a gasp - because she *is* shorter of breath than normal. She claims to have no chest pain or any other pain or weakness, but can barely walk and has lower appetite than normal. She sure doesn't make things easy. The nurse just loves Mom - she said her attitude and spirits are always so good and she's so easy-going - some people in her situation would be bitter and nasty - that's not Mom. But the problem with her being *so* easy-going is that she minimizes things that are rather important - like her shortness of breath.

Susan I agree with Jeanette about the catheter. Yes there is an increased risk of infection but probably no more than with the amount of incontinence she has now. You are getting exhausted and so is she. her current condition is in itself life threatening, not that I am trying to frighten you but retaining fluid like this puts an incredible strain on the heart.
If the fluid is drained in hospital they can do daily blood draws to check her electolites and if necessary give IV potassium supplements. The pills are difficult to swallow. Check with your home nurse on which of her pills are safe to be crushed and give in soft tasty food like jelly or apple sauce. You obviously know the Heimlick manouver but can't get your arms around her. Again ask the nurse to show you how to do it using the back of a chair (well cushioned)
Mom sounds as though she is a very realistic lady and understands she is getting close to needing more care. Consider letting her go to the hospital and try and get the fluid under contol this time. It will be faster and safer than trying it at home with pills without a catheter and they can monitor her better. Once she is stable she can either go to rehab and thence to N/H or home. It sounds as though she is still well enough to at least go this route one more time then consider if hospice is the way to go. Her current condition is very serious, so some hard decisions need to be made. More than half the battle is won in that Mom is accepting of what may have to happen. There is no failure in this game. You have done your best that is all that matters. Today is not too soon to go to the hospital hopefully they can direct admit her not go through the ER.

Shilo your mother would qualify for hospice. Call and have them come and evaluate her. If there is a not for profit in your area they may be the best choice. If you don't like them you don't have to keep them, there is no penalty and you don't have to have Medicaid but it can help with extra supplies. Some of the not for profits are pretty strapped for cash.

My mother does not have hospice service. The only thing she has been receiving is physical therapy a couple times a week for the past few months and an in home nurse comes out to check on her once or twice a week. From December through March, my mother has had 7 ER visits, 5 hospital stays and been in 3 nursing homes. I have been taking care of her at home since March 26th by myself. (Not to mention the past 16 out of over 20 years she has lived with me.) An aide has been approved by medicaid but as of yet no one has started unless you count the one that lasted less than a week.

Lucky, you may hear from time to time about someone having a good nurse or aide and that maybe true. Not everyone has help and if they do it isn't always good help. Some that have decent help have also had their share of not so good help along the way. (Oh no, I hear Jude saying 'It's like sometimes you just have to kiss a few toads before you find the right one...'.) It makes them appreciate the aide or nurse that much more if they have struggled with other help along the way.

Let's hope anyone struggling to get good help receives it soon.

Lucky, I agree with Hope about changing Hospice services. Now is the time to change. You want to have a hospice service that is going to help you through a difficult time not one that will cause you more difficulty.

Thanks so much everyone. Mom is doing ok right now, after an eventful day. (sorry, this will be long)

So much happened today. Home nurse came and was pretty concerned over Mom's breathing and feet swelling - she said Mom is right back where she was when home care first started about a month ago. Feet looking like loaves of bread, abdominal breathing going on and no lung sounds at all in the base of both lungs. She's contacting the cardiologist to see what he wants to do, but pretty sure mom may end up in the hospital for a few days to draw that fluid off. She didn't send her to the hospital right away, because as she said, Mom didn't appear to be in distress like she was last time, pale, sweaty, etc. But she is concerned enough to want to have the doctor check into what's going on.

Nurse *really* wants mom to have a catheter at home, but says the doctors are really reluctant to do that because of the infection issues. I totally understand, but I made it *very* clear to the home nurse that if her Lasix dosage goes up at all, I will *not* be able to take care of it here at home without a catheter. I cannot do more laundry, floor cleaning and bathroom cleaning on a daily basis than I am already doing, because I'm unable to keep up with it now as it is. On *good* days, I change the bed once. On bad days, I change the bed, mop the floor, change her chair pad and change her clothing 4 times or more, which means 4 additional loads of laundry, since the bedding and pads take up so much space in the washer. And then there are the skin breakdown issues due to increased urine output.
I can't work 60+ hours a week on my business, care for mom and do all the cleaning required to keep the house from smelling like a toilet (and keep it reasonably sanitary) if they up that dosage from what it is right now. Not without significant help, which I can't seem to get from anywhere or anyone. I had 16 packages of Mom's new incontinence briefs delivered on June 9th - we are down to 8 packages already, so if I'm lucky, $158 worth of briefs will last just about a month. If they up her Lasix dosage without a catheter at home, I'll never be able to afford the briefs, and Medicare will not pay for them until she's in a nursing home.

Then Mom choked and scared the life out of me. She was purple in the face and making a horrid gagging noise because she couldn't draw a breath. I was pounding away on her back and yelling, "MOM! CAN YOU BREATHE??" - was just about to try the Heimlich (and wondering how the hell I was going to do it on her due to her size) when she finally gasped and nodded to indicate she could breathe, but coughed for a long time afterwards. This pill-choking thing happens to everyone now and then, but it's happening more frequently now with her.

Siblings and I had a long discussion via FB today in a private message and they all understand that we are dangerously close to nursing home placement for Mom. They agree and understand that I'm doing my best to keep her in the home as long as possible, but that it won't be long before that decision has to be made. I think we may have 6 months, tops, before she has to be placed. I discussed it with Mom privately as well, and she understands. None of us are happy about it, but I'm glad we can discuss it candidly and no one is throwing a fit about it. Mom was amazingly calm and rational about it and just kept saying, "that's life. can't change it." At one point, she kind of reversed course and said, "Well, as long as I can keep walking, I'll be ok here at home." - but I reminded her that right now, her walking is not the issue - the fact that her heart and lungs are not cooperating are the problem. Her legs will not be far behind in failing, though. That's just a fact. The more her heart/lungs act up, the more tired she is and the less she feels like walking/moving around - so the legs failing is just a matter of time.

And then I had a phone call from the home care social worker, who told me that Mom was referred to the Medicaid Waiver program, and that even though there was a 4-month waiting list, she felt there was a very good chance she'd be approved. What she *didn't* tell me was that I still had to go through the Medicaid approval process first, which can take weeks. (I thought she had to be Medicaid approved for the program, but this social worker made it sound like by giving a referral, we could bypass that part, so when the waiver program called me and said I had to do all that first and not to bother getting a referral until I did, I was a bit irritated.) Social worker had the nerve to tell me that she knew of another program that *might* be able to help with a few more hours of assistance per week, but that they couldn't do it every day, and that no one was going to be able to give me "the help you seem to think you need". I was mad - right now. "The help I seem to *think* I need"???!?!?! Oh lady....you don't want to go there. It was all I could do not to leap through the phone and strangle the woman. I let her know that it seemed there was no point in bothering with all the hassle, since Mom will quite likely be in a nursing home by the time they approve her anyway. I think she sensed the change in my tone of voice, because the call ended shortly after that. (Obviously I will still go through with the application, because Mom will need to be Medicaid approved when she ends up in a nursing home anyway, so I might as well get it out of the way now...in my spare time, right?)

The home care nurse is just as frustrated with this situation as I am - she knows I need the help and is very concerned that I'm going to get burned out and end up in the hospital myself - and then where will we be?? She has been trying to find alternative resources that will give us the help we need, but there just aren't any. The Medicaid Waiver program is really the only thing that will help. The nurse said it's a horrible situation, because by the time we get Mom approved, she will very possibly already be in the nursing home - which is exactly what I told the social worker.

Thank you again for all your kind words and thoughts....they really are appreciated. I'm going to finish my wine (and my whine) and head to bed.

You know Gershun, where I live it is a MAJOR deal leaving your dog in the hot car. Heck it's all in the paper's and everywhere online. People will break a window if they see a dog panting in a locked car at 75 degree's outside. Now a BABY? Good Lord! People just don't think anymore...I am so glad you happened along, you probably saved that baby's life. Even if not today, I bet that idiot dad won't do that again! Kudo's to you sister! Kudo's!!

Hahaha, funny... mammograms are never fun, they hurt and are scary. Last one I had they made me go back for a 2nd view :/ you know that's scary by itself! Good thing it was nothing and of course I got to walk out with the rose.

My problem lately is sleep. I can't sleep at night. My legs start cramping and the restless leg sh*t hits with a vengeance. I'm up/down/up/down bed to bed to couch back to my bed and finally ended up in mom n daddy's bed. Then it's hot/cold/hot/cold Argh! I think I may have got 2 hours before I finally just got up. It get's daylight so darn early! Did several chores and fed the dogs and I was exhausted so nap time on the couch... got back up and sat there gaining energy, took my pibs to the river so she could "get the stick"...my big girl loves to swim and I found a awesome spot, water deep enough to where she swims way out into the river, yet shallow enough I don't worry :) plus NO PEOPLE! It was lovely but when I got home I had to nap again...3 hours on the couch...now I almost feel normal. Please let me sleep tonight though... if I don't sleep I don't function. That simple.

I've been watering like mad since it's going to be in the 100's for several days...I am hoping to keep what green grass I have! Plus my garden and flowers are looking wilty... we've not had this type of heat in June in years and no rain in almost a month? Who says Global Warming isn't real!

You know, I love you ladies .... your my family in my head LOL, I know you're all real and dealing with so much, it just gives you a special feeling inside that the outside simply cannot understand! (((hugs))) everyone!

Well I had an interesting day. I went for my annual mammogram. Thats always fun. Having your breasts compressed into pancakes. Good Times!!

Then after grocery shopping I discovered a baby locked in a hot car with the windows closed. We called 911 and while we were talking to the operator a man comes barreling out of the store saying "I was only two minutes" Well we were out there for at least 10 and thats besides the point isn't it.

In this day and age you think people would know better. He took off before police arrived. Hopefully we put the fear of God in him and he'll think twice next time.

Anyhow, I know this was off topic. Just my whine for the day.

I hope all you lovely ladies are doing fine today. (and gents) You are all in my prayers.

((((Susan)))) I can't add much that hasn't already been said. I KNOW you are scared right now and rightly so. You've been so wonderful to your mom and I KNOW you will continue to do so. You and your dear mother are in my thoughts... I hate to suggest this but... could she possibly use some sort of catheter, if even for awhile while the meds get adjusted. Really, it is a life saver for you and a skin saver for mom. I am so sorry... we all hate this ... be kind to yourself sweetheart.

Susan i hope your Mom is better tomorrow. ..i understand about the"what if" syndrome...i am finally a little more able to realize it is much easier to know what i would have done if i had it to do over but then that is never the way life is as we know. ..i still catch myself doing it. .adrift to work in the yard, what if something happens to Mama, afraid to run to the grocery, what if Mama needs me. .and it will send you into a trail spin. ..i think God handles things as they're supposed to happen and all we can do is the best we can do. .and take care of yourself in the meantime. ....

Susan, I hope your Mom feels better and that tomorrow is a better day.
When I was younger I used to answer my "what ifs" with "but it didn't happen! Lately I do worry like this too...".what if I was out, in the shower, asleep etc"..
.It happened while your Mom was taking meds so you probably are there with her when she takes them...try to not worry about the "what ifs". You were there and that is what matters now.

Susan don't even go there hun

If you had been asleep is a worry that we all get from time to time, what if you had been in the shower or on the toilet or down the garden or stripping beds or had the radio on in the kitchen. Or even the kettle and washing machine and doing the dishes....it would all lead to the same thing. She needs to be in hospital now to stabilise her.

Darling please don't go down that route or you will drive yourself insane. Don't forget that being strong is knowing when you can no longer caregive. Being a great caregiver is the same. No-one could possibly expect you to stay awake 24/7 you can't do it honey you have to sleep. We all love you babes but I guess we are worried for you ...Just try to be as calm as you can xxxxx

I just thought, with the fluid, your mother's lungs are probably ultra-touchy right now. I feel so bad for her.

Susan huge huge hugs darling you really are going through it at the moment sweetheart...keep the faith darling you are always in out thoughts xxxxxxxxx

This happens to me sometimes, Susan. It is scary. Just a touch of liquid goes down the wrong way and I can't breathe for a few seconds. It makes me cough for an hour or two after it happens. I guess it irritates the lungs. I hate it when that happens, but so far no lasting problems from it.

Susan - I am sorry to hear about your mom's condition. The diuretics are not easy to control and is especially difficult on people with CHF.

...and for added fun today, Mom had a choking spell when trying to take one of her meds - choking spell as in unable to breathe - truly choking. I probably bruised the h*ll out of her back slamming on it to get her to breathe, which she finally did. She coughed off and on for about an hour, took a nap and now seems ok (other than the shortness of breath, which was going on before the choking spell anyway). Going to call her nurse and let her know what happened, though.

Not sure how much longer I can do this. What if I had been asleep when she did that???

Looks like Mom is going to be headed back to the hospital in the next couple of days, possibly. Her feet are swelling again and the nurse isn't hearing lung sounds in the base of her lungs, so it looks like the fluid is on the increase again, and the nurse feels it's not a good idea for her to stay home and be on increased Lasix, because it screws with the potassium levels, plus we can barely keep up with the urine output now as it is - increased urine output means increased risk of infection and skin breakdown due to her incontinence, which is getting worse all the time.

Guess we'll see what the next couple of days brings. We're waiting to hear from the cardiologist on what he wants to do.

Settled, not syked..