Frustrated and Impatient and Whining about it

[aharris2]

I have been in the hospital for 18 days last month and 10 days so far this month as my brother's caregiver and I am going f*****g crazy!

He can't be left alone. Not only does he not want to be alone, but anyone in this situation needs an advocate. And, the number of medication errors averted by having someone here with him is truly scary! I will be speaking to the nurse manager about it. The level of sloppiness is appalling!

I am not a confrontational person. I avoid conflict. Here, I am forced to step up (and I do) but it is painful for me.

I have missed a lot of work in the past 6 weeks. I am burning leave time at an alarming rate. My bosses have been fantastic and accommodating, partly because I have my work computer with me and have been able to answer e-mails and phone calls and keep my projects running. I also have a good team of inspectors keeping things going in the field. I could simply go to work, but I have a hard time focusing when I am worrying about my brother. I do need to conserve leave time so that there's something left for the normal things - appointments, dialysis...

I miss my pets!!! My brother's wife spells me from time to time, thankfully, but is not real familiar with his meds.

I am so frustrated. They are so slow, so inefficient. I am not a patient person and this unnecessarily slow pace is killing me! I feel so bad for Rolando. He's being stabbed, cut, starved, deprived of sleep, and held prisoner (with his consent). He too needs desperately to go home, to get back to normal. I hope his patience is rewarded by better health and a long period of great well being.

We gotta get out of here. I can't stand much more of this.

[jbeany]

Yes, unfortunately, anyone stuck alone in the hospital needs someone there or things get drastically screwed up. 

Hope things get better for both of you very soon!   

[willowtreewren]

There isn't much that I can say or do to help you. 

I just hope that knowing we care will be some comfort. And that we are hoping Rolando is able to leave the hospital soon.

 

I know that Rolando appreciates all you are doing.

Aleta

[monrein]

Feeling badly that you are both going through this.   

[Chris]

It's good to vent, but you also need time alone to relax and time set aside for yourself if the time comes from work. I do not know your situation with his wife so I can't comment on that. However I know your frustration with the hospital making errors on medications, been there done that. Even when they tell me to bring my own medications in, they take them away from me to store in a so called safe place in their pharmacy downstairs and still manage to screw things up. (hence learned to keep mouth shut, hide meds, take them on time and together, not seperate several hours apart). So yes, bitch to the nurse coordinator/ adminstrator about the errors Sometimes it helps, but you have to still keep an eye out because sometimes they revert back to screwing things up, not just due to shift change, but not following through. If technology could only be used to were you didn't have to be there by using a web cam and a mic without the ability of the doctors or nurses turning you off.

[boswife]

very hard spot to be in both emotionally and physically.........  I 'thought' that hubby in hospital would give me a needed break but it does not!!  I couldnt leave him for fear of them sticking him wrong, using his fistula arm for tests, etc etc etc............... and more etc!!  im so sorry and wish a break for you somehow...  It wore me out and its awful knowing your going through this...  I pray for some peace and rest... bless your heart for all your efforts.. 

[Poppylicious]

I feel your frustration, you poor thing. 

Unfortunately I'm unable to do anything but offer *huggles*, but I offer them with oodles of love and lashings of hope.

[okarol]

When my husband had a long hospital stay I hired a nurse from an agency to be at the hospital a few nights so I could see my kids and get some sleep. I couldn't get him home fast enough. Hospitals, in my opinion, are for critical care, otherwise I will take my chances at home. I hope he can be released soon and you can get a visiting nurse to help with bathing and meds and you can get back to work. If not you may want to take a leave of absence, if you qualify:  A leave of absence of between 12 and 26 weeks must be given to qualifying employees under the federal Family and Medical Leave Act (FMLA). The medical leave act provisions require covered employers to grant leave to eligible employees for their own serious health conditions, to care for a covered family member with a serious health condition, and for family military leave for a qualifying exigency or to care for a seriously injured or ill servicemember or veteran. The family leave provisions also require covered employers to grant leave to eligible employees after the birth, adoption or foster care placement of a child, to bond with the child.
I hope things get better soon. Sending you {{{BIG HUGS}}} Alene! 

[aharris2]

Thanks everyone, thanks for all the hugs, huggles, and good wishes.

Chris, been there done that, even to the extent of bringing in and hiding our own insulin. Not this time though, But we fought a major bloody battle regarding the use of Rolando's own blood sugar meter - no, no , no, no, not possible, not even for you good doctor (the nurse nazi told him no) Come to find out that a doctor simply needs to write the order, and yes, it is possible. The good doctor took good care of us. But why does one have to fight, where's the common sense?

Boswife, you know! To all, thank you for understanding.

[Chris]

I forgot aboout those doctor orders, but even forget when I am in the hospitaltill the right person tells me that the doctor has to write it in the charts.

[aharris2]

It's Saturday evening and life is good. We have been home from the hospital for 12 days including two weekends and plan on keeping the string going for a long long time.

As you know, my brother and I spent of 50 of the 68 days from March 10 through May 16 in the hospital in three separate stays - my brother with three distinct malfunctions and me there with him as moral support and as his advocate and protector. It was a difficult time for both of us.

His wife's comment: I am a control freak with trust issues.

Gotta love it!

[boswife]

    Awwww,, Music to my ears....ie..."life is good"    And i praise you from head to toe on all your efforts...  Bless your everloven heart for following through and giving your brother the care and comfort you did.  If i could crown you, i  would !!  I do know what it entails and my 'stays' were for no more than 6 days at a stretch and i about lost it, but emotionally had no choice but to continue.  You certainly have a loving heart and your bro is blessed..... 
His wife on the other hand........... are you kidding me?   oh lordy lordy lordy!!  It's a good thing we do these things we do out of love and not for admiration from others    Well, i want to thank you from the bottom of my heart for the selfless gift you gave...  Bless ya and enjoy your time.  Hugs to you and bro   

[lola]

give my RICO a big FAT from his Lola

[okarol]

I am glad Rolando has you on his team - there's no telling what would have happened without you, I hate to imagine. Trust issues? No $h!t!

[aharris2]

Trust issues? No $h!t!

Right? Wouldn't all of us caregivers be so happy to breathe a sigh of relief knowing that our loved one is in good hands in the hospital or wherever? But it's not that way, it's strictly a change of venue and the need for caregiving goes on.

Lola, your message was delivered with pleasure and happily received!

Boswife, you are too nice!

[Chris]

Great news, but still can not come up with a nice coment that can be posted about wife's thinking.

[Sluff]

I know you two have been through so much even for the little time and contact I have with you and I get frustrated with the things Ro is going through so I can not imagine the stress you both are enduring. Ro is so lucky to have you Alene, or unfortunately Im not sure Ro would have been able to make it through these mistakes and incompetence. You will get through this and things will improve. Always thinking about you two in my travels. 

[paris]

Alene, I have thought since I first met you that you are truly an early angel.  Rolando not only knows he is fortunate to have you, but he appreciates all you do.   In Vegas, we watched as you cared for him with such tenderness.  We should all be so lucky to have anyone in our life that loves and cares for us like you do for Rolando.   

I'll keep saying "stay at home" prayers for both of you.   Tell him we love him      and we love you too.

[okarol]

Alene, I have thought since I first met you that you are truly an early angel.  Rolando not only knows he is fortunate to have you, but he appreciates all you do.   In Vegas, we watched as you cared for him with such tenderness.  We should all be so lucky to have anyone in our life that loves and cares for us like you do for Rolando.   

I'll keep saying "stay at home" prayers for both of you.   Tell him we love him      and we love you too.

I feel the same way. I saw you in Las Vegas and in So. California - you are patient and kind and strong as can be.
You ROCK Alene!

[aharris2]

Paris, Okarol, how did I miss your kind words? Thank you, you saw us at our best - on vacation. Sometimes things are vastly more stressful and hard on both of us.

Things are getting back to normal here. There was a fourth hospitalization for a gastroparesis related GI bleed (esophagus) - in on a Sunday, out on the following Friday (June 17th). It was preceded by an ambulance ride from the dialysis unit to the ER the day before but we got out in time to return to dialysis and complete the treatment. The hospitalization - it was over the top for us. They discontinued Rolando's phosphorus binders and infiltrated him twice with his IV, the second time leaving a chemical burn - now about the size of a half dollar, very painful and needing ongoing wound care.

  And we fought the insulin wars... again. Nurse: His blood sugar is 210, he needs 8 units. Me: Each unit lowers his blood sugar 50 points, he needs two units. Nurse: By our formula, he needs 8 units. Me: 8 units times 50 points per unit means a blood sugar reduction of 400 points, he will be beyond dead. He needs 2 units. Nurse: I'm sorry he needs 8 units or you can refuse the insulin. Me: So my choice is to kill him fast by giving him 8 units or to kill him slow by refusing the insulin when he NEEDS 2 units.  Nurse: I'm sorry, I can give him 8 units or you can refuse it. Me: I told you that 8 units will kill him... but I'm not refusing it SO NOW WHAT ARE YOU GOING TO DO??? I have told you that 8 units will kill him, are you going to give it to him? (Not that I would have actually let them give him 8 units). Nurse: It won't kill him, we can treat a crash, that's what juice is for. Me. Are you sure? Have you seen how rapidly he crashes? You will be giving him four times the amount he needs do you think that a juice will stop that crash? He will be dead before you even begin to react appropriately (of all things, the doctor has to be called to okay the glucose, glucagon whatever it is that they give them during a severe crash.) You will kill him, so what are you going to do? Nurse: I'm going to call the doctor. DUH!!! She went away.

Then she came back with the charge nurse and tried to explain their protocol blah, blah, full amount or none, nothing in between. I told them to get out of the room because they were wasting my time. Oh, by the way nurse, how long have you been a nurse? Nurse: one year. And again I say DUH! (okarol, did you say I was patient? Not always!) Geez, I'm getting wound up again!
 

But we've been home for two weeks. We've been out to eat a couple of times and we saw two movies (Green Lantern and Mr. Popper's Penguins) last weekend. We'll go out tomorrow and probably see the fireworks on the 4th. Next month, God willing, we will be headed north (to the panhandle) for Rolando's eldest granddaughter's first birthday party. She's quite a cutie (all eyes) and he's really looking forward to seeing her again (not to mention his daughter and son-in-law!)

[okarol]

Awww what a cute baby!!

I wonder why some nurses are so determined. I have sometimes said "Well, I am going to call the doctor's exchange and have him paged, and we will let him decide." They really hate that. 

Best wishes that things improve (or stabilize!) Big hugs for you both! 

[Chris]

Sorry to hear about the nurse. I was in a similar situation  a few years ago and ended up in ICU due to the stupid nurse when she would not listen to me. They either don't listen to you when you need insulin or the proper dosing dosing by ones own specialized sliding scale of insulin dosage
 
No matter what health, seems one always has to fight while admitted as if we go stupid once we are admitted as if we do not know how to take care of ourselves even when out.

[aharris2]

I was in a similar situation  a few years ago and ended up in ICU due to the stupid nurse when she would not listen to me. They either don't listen to you when you need insulin or the proper dosing dosing by ones own specialized sliding scale of insulin dosage

There are certainly stories out there, Chris. I wonder how many mysterious "turns for the worse" have their roots in insulin mismanagement by the attendings and nurses. What did they do to put you into the ICU?

[Chris]

At around 3 pm I started to feel my blood sugar high, called the nurse and she took my blood sugar and it was 320. I said I need some insulin and she told me to wait since dinner is coming in a couple hours. I called again and told her I was feeling worse and I need insulin. She didn't do anything and I was getting very sick. Next thing I know is the bed is raised, the bright lights were on, couldn't move or feel much, and they couldn't get another IV going. I nded up crashing not from a low, butended up in a coma and in ICU. My normal nurse was pissed off that the nurse I had let this happen. Getting control back was hard and ended up in hypoglycemic while in ICU while sleeping. A big syringe of D-50 was given and that was painful. I forgot why the nurse never called my doctor and I haven't seen her since working at the hospital (bad when you have seen all the nurses at the hospital, phlebotomist know you when shopping.
 
I was thinking, if that nurse you had had to give glucagon injection, I bet she wouldn't know how to do it unless it has changed. When I had to carry one around, it was a two step process by injecting the saling into a vial, shake/ roll the vial for a few seconds then draw the material out, all before the material rehardens. By the time she would have read instructions, it would be to late for that to help.

[The Noob]

hey bro, Good Lord is all i can think.

when hubby was in hospital a few times ago, he had just had the emergency jugular port put in, had his round of hemo, was terrified, sick and weak. they brought him back to the room and an aide came in. she was rude, pushy and rushed. barely spoke to us. me and nurse trying to get hubby settled in bed. this aide slaps a bp cuff right on top of his IV in his arm. i grabbed her hand and said WAIT. then she started pulling his gown off at the chest looking for cardiac monitor. i said he doesn't have one. i then took her by the arm gently but firmly and escorted her from the room and dared her to re-enter.
while he had been down in hemo unit they gave him vanco, then another nurse came to give him another dose. i was there reading his chart and said uh oh no more, better check i think he just had a dose.
while this nurse is checking on that, 2 other nurses came to hit the go button on this med. again i said NO. he had just had a big dose less than 30 mins before. they got it straightened out that it was a mistake in his chart of a duplicate order. later the same nurse came up to his room to apologize.

few months later when he was in ICU, i was doing his PD and told them he needs heparin for fibirin. they didn't know what it was so i brought back out to show them. the pharmacy wouldn't give it.
nurse finally just got some out of their supply. she brings the vial and syringe in. drops both on floor.
no masks or gloves, pulls up the med, after handling it un sterile, drops open syringe on floor and then on bed, puts it in her mouth, then injects it into his dialysate bag with no cleaning the port.

i am standing there about to drop, with a horrified look on my face. the man has already survived 9 episodes of peritonitus. this was his new PD cath and we were desperate to keep it sterile.

i did alot of teaching to the ICU nurses that 4 days. but they were mostly good students.
a month later we were back to same hospital and he had to have emergency hemo and surgery.
they put us in a double room and that patient had alot of visitors talking very loud, coughing, etc.
hubby had 30+lbs of fluid around his lungs due to malfunction of PD. it was a 19 hour day at the hospital after 5 hours at the clinic. i asked for a cup of coffee while we waited. none on floor and he didn't want me to leave him. the kitchen was right there but i wasn't allowed to go in. finally i walked out to nurses desk and in front of everyone said "do you think if i called the hospital administrator he'd have time to bring me a cup of coffee?" (all said in a feeble tone). coffee there in 30 seconds.

Chris, if i were able to be there and be your advocate, i'd be kicking butt.

sorry about the rant, just amazed at what goes on behind the scenes. people have no idea brother.