As caregiver do you have to get pushy sometimes ?

LiveWithCancer

My husband had a stroke on Thursday. He has been at one of the large medical facilities in Dallas since he was finally admitted.

I took him to a smaller (closer) facility first but they didn't have a neurologist or the equipment for the tests he needed (MRI machine, I guess) so he was transported by ambulance to this large facility. I was able to go into ER with him at the small hospital - his ability to talk is affected- but i was told i absolutely could not even come in at the large hospital ER.

I got 2 calls. The first was from a financial person (anyone surprised?) and the second from a case manager or something. She told me if he went onto a nonCOVID floor, i would be able to visit. That was huge since the only way i got him to go to ER was by promising i wouldn't let them admit him...

I asked if she had seen him. She hadn't but connected me with his ER nurse. Who was sooooo rude. And unhelpful. I asked if he was going to a non-COVID floor so i could visit (more below)

GregP_WN

Oh man, I'm sorry he had this happen. Especially now. This covid crap is making everything worse hospital wise. I hope he is OK and that you get it worked out to be able to be with himl

LiveWithCancer

She said they had COVID scattered all over the hospital. I got really angry and reminded her that he is not some healthy 30-year-old with COVID. He has a ton of health issues and COVID will kill him faster than the stroke (i nearly didn't take him to ER for that reason). She said "yeah" and hung up.

I was so furious, but she had listened. She called a few minutes later, as nice as could be, and said he was being tested and would be placed on a non-COVID floor if his test was negative. (Apparently if you go in with a heart attack or stroke, they blame COVID).

I spend from 11-6 with him (the hours I am allowed to be there). Today, we barely saw anyone (the nurse 1 time) and no one has told us ANYTHING about his condition except that he had a stroke on the left side with brain bleed. And that he might be discharged from hospital on Monday.

I told the nurse that if someone needed information about lung cancer, i am a wealth of information. But i know nothing about stroke. And I don't like being left completely in the dark about his condition or plans to come home .... and how future therapy was going to work. She resented me questioning her and told me it wasn't her job to schedule doctors or therapists or to tell them they needed to talk to me.

I hated that attitude. I am begging for info beyond Dr Google and answers that will have an impact on my husband's life from here on (mine too if he remains unable to communicate or to feed himself) and she clearly did not care. I got a bit aggressive (loud) about it. She finally said she would find a case manager and text the doctor. She tried to say i couldn't expect decent care because of COVID.

Hello? We are paying the same price as COVID patients and my husband's life is every bit as valuable as anyone there with COVID. Don't admit us to your hospital if you can't give us proper care and provide us with information when requested.

I would love to read the messages she sent because it was only minutes before i got a call from the case manager. The second i hung up from her, the Hospitalist (new one for me - MD who coordinates all care) called.

I apologized for being a pest but that i was definitely not above being a squeaky wheel in order to get my husband the care he needs and deserves.

I hate that it came to that, but i wonder what's happening to patients when the spouse or loved one can't advocate? My husband can't talk well enough to even begin to try to do it for himself. (He wasn't thrilled that i was doing it either but he was interested in the answers i got). I didn't see another visitor on the floor, today or yesterday so lots of patients are fending for themselves.

Sorry ... this is really long, but it infuriates me that we have to be a squeaky wheel to get proper attention and care.

Bengal

I think you were right to be "the squeaky wheel", after all your husband's very life could depend on getting the proper care. Your advocacy for him is commendable. On the other hand, we are at war and Texas is under siege right now. Hospital personal are pushed to the absolute limit. We went through this in New York a few months ago. It is surreal. Thankfully those you spoke with heard you and followed tbrough. You and your husband will be in my thoughts. Hoping for the best possible outcome.

LiveWithCancer

Thank you, Bengal!!

I know COVID is horrible, but so is having a stroke and having the rest of your life to live completely disabled from it... if they said they had a bed then that should mean they had staff to take care of the patient in the bed. (my opinion). If they didn't, they should have said we needed to go somewhere else. I MO.

If i hadn't insisted on talking to the doctor, i wouldn't have learned he also has mild congestive heart failure. I have been talking to a nurse tonight who said i need to be really cognizant of what to do to keep that from getting worse (her husband died from CHF and diabetes).

GregP_WN

We are led to believe that because it's a "hospital" full of educated, professional people, that we don't have to do their job for them. But we learned a few years ago when Donna's mom was in several hospitals and two or three different nursing homes. Three facilities in a row had her medicine list wrong, were giving her way over or under the dose she was supposed to be getting of them. Some of the nurses needed to be smacked and told to get out and go home and look up an alternate form of employment, and others were fantastic. It's amazing to me, but true to a point, employees are just employees, no matter where you go. Someone working at Walmart, lowes, the hospital, my landscape company, or pretty much any place are all the same. Good help/nurses/doctors/employees are good, and bad ones are bad.

I have had to get loud and obnoxious to make a point before. I've had the facility mgr. called on us before. After complaining that we had told one place 3 times that her meds were wrong and still had not been corrected and that's the reason she was in the hospital to start with, I asked why, the nurse on shift wanted to pass it off on the previous shift. After I said that wasn't going to work and we needed it changed right now, right there, she said it couldn't be done without the doctor's approval. They needed his approval to give her what she was supposed to be getting to start with. After explaining how ridiculous this was, she said all I can do is call the head nurse, the facility mgr. and the doctor and wait. We said we would be waiting. The head nurse, the facility mgr, the shift nurse, and another girl with a laptop who was recording everything that was said showed up to shut us up.

But, we got her meds changed to what they were supposed to be .

Sometimes you have to be the squeaky wheel. Or a screaming wheel if it takes it. Once they realize you mean business things usually go smoother. And I will pour praise on them once that happens. My brother was fond of dropping off a flat of chocolate covered strawberries at the nurses station to "bribe" them into doing a better job. He would drop something off there and say, "this is from the Pierce family from room 224". Amazing how well that works.

I hope you get answers, decent care, and that his condition isn't serious.

PaulineJ

I know I'm supposse to mind my own business unless it's something unimportant,but I'm feeling sorry for people going to hospitals for anything today.God only knows what they're doing to them while they keep everyone else away from them.like testing for the so call flu/virus,putting some in them and a microchip ,maybe.I know it sounds crazy,but I've heard some has gone into hospitals for other things then that so call virus and died.And another thing they do is put on everybody's death certificate that died that they died of covid.

legaljen1969

@PaulineJ, while there has definitely been an uptick in noted COVID deaths, as shown on death certificates, it would taking a huge risk to implant things in people.

legaljen1969

@LWC, I am sorry you’re having to go through this. My thoughts and prayers are with you and your husband.
If you have to be the squeaky wheel, then do it.
I’ll be in touch with you a bit later.

PaulineJ

Let me explain .Someone I know >wife went to a mental unit for mentlal problems.Than was transfered to a medical unit a short time after.While she was in a medical unit they took a test for covid and God knows what else Not too much after she was sent home.No sooner she was home that same day she started acting very strange and went back to a mental unit in the same hospital.STRANGE!

LiveWithCancer

After my tirade yesterday about how stupid it was for the doctor to come to visit a stroke patient who can't communicate and demanded he come when I was here, 11 to 6, which are visiting hours ... i was 15 minutes late this AM. And missed the doc who waited until 11 to visit... i was gratified that he at least tried to honor my request. And asked my husband for my phone number, which he was not able to do because he couldn't remember it and didn't think to get it off of his phone.

I am so sorry for patients who have no one to advocate for them. I am guessing they often get substandard care, which is very sad because they certainly are not charged substandard rates.

I agree, Greg, that no matter the profession, there are fabulous, adequate, and sorry employees.

He's doing okay. Regaining some language skills, working on fine motor skills, and strength seems to be returning. It could have been much worse. Thanks for asking!

Kp2018

What a harrowing experience you and your husband are having! I am so sorry that he has had a stroke and really needed medical attention - especially at this time when the health care system is stressed so badly by Covid.

You have every right to be strongly assertive in your advocacy, and have nothing to apologize for - to anyone.

It's encouraging that he is regaining some strength and function, There needs to be a strong follow up plan for continuing rehabilitation services as part of his discharge. Don't leave the hospital without it!

My very best wishes for his continued improvement and your strength and skill in advocating for him.

LiveWithCancer

@Kp2108, 2 neurologists came to see him this afternoon. They said he was on the line between needing to go to inpatient care and being outpatient. They asked if we had a preference and I said i would rather take him to outpatient because i had heard i couldn't visit inpatient and so wouldn't be able to advocate for him. He won't advocate for himself, especially now.

He's doing really well, but we still have a long road of recovery ahead of us, particularly with speech and cognition.

Carool

LWC, I’m so sorry that your husband is ill. I wish you both all the best.

LiveWithCancer

Thank you, @Carool!!

Kp2018

LWC, I would have the same preference as yours - outpatient rehab, in-home to whatever extent possible. You will be a huge influence on carrying over and reinforcing the treatment plans, in addition to being your husband's advocate.

I'm so glad that he's doing well. While there's a long road of recovery, I think you'll both be pleased by how much function he will regain. Just as in cancer treatment, there have been wonderful advances in post stroke rehabilitation.

Paperpusher

My husband had his left brain stroke in 2004. It was the ischemic type. I can't imagine what it would be like if Covid was in the picture too. YES, you have to be the squeaky wheel. If you miss the doctors, you can have them call you. I found that the come in before visiting hours and felt like they were trying to miss me. Yes, I asked a lot of questions. They did a lot of testing. What were they and why. What do they mean. He was transferred to a rehab facility at 8pm by ambulance with a nurse. The rehab was fantastic. He was there for 6 weeks He had OT, PT, and Speech therapy. I did have to push the OT a bit to show him how to make a sandwich since I was still working PT then. He ended up making a meal for the whole group. They have so many assistive devices available. I keep an extra battery powered can opener in in the house to this day. Hubby worked very hard there and at outpatient OT/PT for the next 6 months. HE got his drivers license back and is still driving. He didn't regain the use of his right hand but quickly learned to use his left. The best thing they told me was to never do anything for him that he could do for himself even if I had to watch him struggle. Keep squeaking LWC!

LiveWithCancer

@Paperpusher, my hardest thing is to not do everything for him!!!! It seems so much easier to just do it for him and be done. God is teaching me patience, for sure.

Thank you for your insight.

BoiseB

LWC You go girl. My children have become great advocates for me. If my brother hadn't advocated for me. I wouldn't be here to day. My daughter also was an advocate for my comfort. You have mentioned before that your husband isn't the most cooperative patient. So you might have to get pushy in that capacity also. I am thankful for my son's demands that I take care of myself.
Covid tests are hard to get. I definitely would take one no matter what I was in the hospital. People test positive before they show symptoms. If I had to be hospitalizes because of something like say appendicitis I would want to know if I might have covid 19 symptoms in the next few days.
Sending prayers for your husband

MyLungCancer

If you don't watch what everyone is doing you will wind up with mistakes being made. Most are simple and won't matter at all. But mistakes kill people, that's why you see the TV covered with ads from attorneys on the nightly news. It's a shame, but for a bunch of reasons, mistakes are made. Sometimes it's simply them being in a hurry and not reading the chart right. Giving the wrong medicine is a common one. If not the wrong dosage its the wrong med all together. We caught them giving my mom the wrong dosage of one medicine that was causing her to be a balled up drugged out person in the hospital bed. I kept asking what's wrong with her? Why is she just laying there? I actually thought she had died. When I asked to see her list of medicines someone had her medicine at 4X the dose she was supposed to be getting. After they changed it back, she started coming around. If we had not been there it's no telling what might have happened to her. .

LiveWithCancer

He's home now so that's a huge relief! On the discharge papers, I see that they have some dosages wrong on meds, but they gave him too little, not too much ... or actually, in some cases, they were doing something different. For instance, he takes Metformin but they were giving insulin.

I didn't have to worry much about them doing anything wrong - they were never in there. It was ridiculous how little care he got while in there, running up who knows how big a hospital bill. Everyone's excuse: COVID. I didn't get your discharge papers done in a more timely fashion because of COVID. Hello? Is our nurse just the nurse on our floor? Where there is no COVID? Crazy. I think it is becoming a very convenient excuse to deliver poor service. I'm not happy about it. They certainly didn't give us a discount because we would not be getting any service because they are so busy with COVID. And, what makes a COVID patient's life more valuable than my husband's life? A life is a life. And everybody has the same desire for THEIR loved one to leave the hospital in the car and not a body bag.

I am certain that some COVID patients require a lot of care but I'm just as sure that some of the less severe cases are not getting much more attention than my husband got. Not everyone with COVID is on the verge of dying.

With all of that complaining and soapboxing out of the way, I am VERY grateful that I was allowed to visit my husband for most of every day. So many people can't see their loved ones who are in the hospital or in other facilities. And, I'm especially grateful that despite the lack of services, he is recovering nicely (we could have easily NOT taken him to the hospital and had the same results). He is regaining his ability to speak and slowly but surely is regaining the use of his right arm/hand. Surprisingly, that's one therapy (occupational) the doctor did not recommend for his outpatient care and it is an area of great concern. The reason the doctor didn't recommend it? He had no idea. My husband has adequate strength in his arm, hand, and leg .... but the fine motor skills are lacking severely ... and no one bothered to even look at that.

Bug

Oh, LWC, I'm so sorry about your husband. You'd think the health care system would help us at times like this, not make things harder. Many prayers and best wishes for both of you.

LiveWithCancer

Thanks, @Bug! He had a neurologist that was exceptional and who came when I was there. I asked him everything: can I get a meeting with a dietician, will we be sent home with insulin and if so, who will teach me to give shots (i can give myself shots, not sure about someone else), rehab questions... And he patiently and thoroughly answered everything.When he came in for final visit before we left, he brought me paperwork on diet (different info than the dietician gave us). In other words, he went FAR beyond the call of duty, but he was the only person who did, by far.

I will be able to accompany him to rehab which is a relief on many levels! I am somewhat surprised that I am being allowed to do as much as I am during this pandemic. I feel fortunate for it.