Powerful writing from November of 2011, 6 months after my husband’s heart attack.
His heart attack was May 4, 2011 and I wrote this 6 months later the week after he was finally discharged from outpatient cardiac rehab.
It was the beginning of recurrent bronchitis that lasted for over 6 months and then I suffered a car accident and the wheezing was present as the medics checked me out on the scene of the accident May 26, 20112.
I left this post as it was to show my mental state as I typed…
The original title was:
What I need to tell the head of Case Management (at Presbyterian Hospital)
You gave me a case manager who listened to my story. She sat and listened and heard me out when I was looking for help early on in the process. Yet this same person who sat and listened, told me she would follow up on several things and get back to me and she never did.
She also told me things that are not true. She told me we would have been better off with no insurance because then someone from social services would have come and helped me fill out a Medicaid Application. Well part of that is true, someone might have come and done that had that been the case. But what she failed to tell me was how important it was to file for Medicaid right away and she failed to tell me the simple rule for NC Medicaid that you can’t have more than $3000 in money at the end of each month (after paying bills)…that is the best I can describe the “law” not having seen this any where in writing but only after finding out months later that because we had IRS tax refund money in our checking account, it disqualified us from Medicaid until the money was effectively gone. We lived on that money for several months to pay our basic expenses while my husband nor I was working.
I am just warming up. That is just the tip of the iceberg at their lack of discharge planning and family education and effective “case management”.
Or maybe that just means that they have brief cases that they carry around and take care of. Do I sound bitter and resentful?
I have every right to be because I
I AM A HEALTHCARE PROFESSIONAL
My job as healthcare professional is in part to assist people with being ready to return home or to whatever setting they are returning to and to ensure they will have the assistance needed when they return home.
first things first
Our lovely Case Manager
who so comforted me in my time of need- but then failed to follow through-
(I am trying to see the positive here)
She then comes to us very late in the day, after the doctor discharged him around 10 or 11, after we inquired and then the nurse got to us, right after lunch I believe.
Mind you, the only help I had at home, was my mother who had been at my house all week, returning after being with us the initial 3 days until my sister-in-law arrived. My mother was tired, she had been taking care of three intense children and my episodes of panic or crazy blood sugar due to insufficient nutrition- or whatever it all was- stress
So, we have spoken to the doctor and the nurse for discharge and the nurse keeps informing us that we are waiting for the social worker.
I must add that a few days prior, I had called for the social worker, after the first one failed to follow through and come back to talk to me. It was Monday or Tuesday when I spoke to her and their was no sign of her Friday. So it might have been Saturday when I called and this other social worker came and spoke to us. I remember wishing she would be the one who came for discharge. But no, it was not. So sometime after 4pm, the social worker shows up and begins the conversation
mind you my husband suffered a severe heart attack, was in CCU for 4 days and then the step down cardiac unit for 8 and was on monitors the entire time we were there. When he was finally able to get up and move around well, it was the weekend and I had to throw a fit to get Physical Therapy come see him on Saturday, knowing it was very possible he would be going home Monday and his doctor was off for the first time since we’ld been there and wouldn’t be back til Monday. His replacement was a Jackass who spoke inappropriately to the nurses (my husband’s description) well, he didn’t call him a jack ass, I did because he walked in, I wasn’t there, and looked at my husband and said, well, it doesn’t look like you’re going any where anytime soon. This was Saturday morning after his doctor had led him to beleive the day before that he might very well go home Monday.
The next day, he had apparently talked to my husband’s doctor and was much more on the ball with what was going on with my husband and more appropriate, at least with my husband.
Nurses, apparently learn how to ignore the jackass doctors because, well, doctors are not known for their personalities.
Remember, I have worked with doctors, so I know first hand.
So now that we are all agreed that the guy was a jack ass
Oh yeah, my husband wasn’t allowed off the unit, not beyond the square around the nurses station in the small step down unit at the end of the hospital surrounded by vacant hallways due to a remodeling project because it was the weekend, and they would have to clear it with the doctor, have an order (everything needs an order)- I wonder if they need orders to speak kindly- you know, jack ass is the default mode-
anyway, so my fit to have him come off the unit and be wheeled to a new floor to get out of the room he had been for 8 days, unlike my fit to get PT to see him- guess I knew how to play my cards better with that department or maybe cause therapists generally aren’t jackass.. cause once someone called them, they came that day and the next,
Now,I am beside myself because it looks like I might be bringing my husband home on Monday and it is Saturday afternoon but I won’t know until I show up at 8:30 Monday morning and sit around and wait for the doctor to come in- cause that is the only way to be sure to be there when he comes to see my husband, is to show up at the earliest possible time that he might come for rounds. It was 6:30 when he was on CCU. And then the nurses tell me really I should be there earlier like 7 just to be sure.
So he has been on continuous cardiac monitoring the entire time he is here, all 12 days with frequent checks of blood pressure and pulse and oxygen saturation. And we can’t leave his unit but in two days, they might just send us home-
with home health care because I insisted on it-
And that is another story, because the lovely social worker, never notified the Home Health Company that he was discharged and so they did not know to come out to the house and the they are supposed to be there within 48 hours of discharge.
How do I know this? Because I have worked in home health care.And so the home health nurse came 2 days after he was home, because I called the agency and I let them know he was discharged
BECAUSE I DID HER JOB
Put me on payroll please
So back to the hospital when the social worker finally comes into the room after we had been waiting all day
NOW I do understand that case managers or social workers or whatever you call them, are way overworked because I KNOW DAMN WELL THE EFFECTS OF THE CUT BACKS ON HEALTHCARE.
This issue is not so much how long it took her to come but the information she brought to us when she finally did come.
She started her conversation off with us something like this
and it has been 6 months and a blur and I now understand what she was doing but at the time, I had no clue.
She came to us and said,
“OK you can get this medication at these places and this medication at these places”
And she had these long lists, not that she was giving us any list, I don’t recall that she did. Maybe she did. And she went on and on and I was like, what the #%!?
I knew I needed a prescription for 5 days until we could get Med Assist (local agency for assistance with medications when you don’t have medicaid) but little did i know that I really needed to go and apply for that while he was still in the hospital. Like I had time for that between advocating for my husband, caring for him, being there for him and then being with my children in what little hours were left of the day/night.
So I had no idea, it took 5 days from approval and that they would look at our income and base an entire year of income on 1 month of my prn pay checks where I was working more than twice the hours I normally do. The increased hours were temporary while another OT was on maternity leave. No idea that would be the policy. Because, did you know the entire support system like Medicaid is set up based on people who work for an employer full time or at least regular part time hours. There is no consideration for prn pay (which is higher than normal pay because you have no benefits and NO guarnteed hours- I have lost a week of work because of being prn- thinking I would work 40 hours one week when they didn’t need me for that and ….I digress
I like being prn- but if you need help form the system, you are screwed.
Just to be clear, I have been sick with some kind of upper respiratory thing, and today I have heard what I believe is whezing and I feel like I am going to cough up my lung. Well, grief is processed in the lung.
And for some crazy reason, when I try to sleep, I have been relieving 6 months ago and my husband’s blue face and the whole freaking experience.
Maybe I am finally REALLY FEELING IT ALL AND FINALLY REALLY GRIEIVING.
My husband was discharged from Outpatient Cardiac Rehab this week.
I don’t think so. Just now realizing that one….
…and it is still sinking in….
ahh, other stories to tell.
Ah yes, the lovely discharge with the Case Manager on May 16, 2011.
So she is talking about all these places to get medication to get the $3 rate and how I can go to more than one pharmacy to get them all and I was like
I GUESS I THOUGHT THEY WOULD SEND US HOME WITH MEDICATION
It was getting late, my mom had my kids and was going to bring them to the hospital and was going to be heading home from there and I would be driving home my husband, now off all monitors, with our three children, ages 2, 9 and 13 to be alone at home and manage everything.
While he was in the hospital, my family and friends had pretty much taken care of all meals and grocery shopping and all the laundry.
So I am worried about my husband having another heart attack or something medical when he returns home and worried about helping him recover while taking care of our intense and 2 out of 3 very high need childden. And she is taking to me about saving money for 5 days worth of medication.
so I think I cut her short once we figured out we could just get 5 days worth of medication from the hospital pharmacy and then be on our way, but the pharmacy closes at 5 and we had to hurry.
I don’t really remember what happened next, with the case manager
I just remember the long wait at the pharmacy and the not so friendly pharmacist and the other person who worked there-
shame on both of them, they work in a hsospital, they need to be nice to people! Everyone else, mostly was very nice including housekeeping staff and kitchen staff- but oh, not the pharmacy.
So we get the expensive medication that I had to pay for then. You would think it could be on our bill….but no, WE WERE DISCHARGED AND ON OUR OWN!
It wasn’t until Wednesday that I could get to the Med Assist office, when a friend was able to come stay with my husband, and turn in the paperwork and then it was at least 5 days before I found out, maybe longer that we didn’t qualify, just over by like $1800 per year- due to the above mentioned prn pay checks for one month that they multiplied for the entire year even though that was grossly inaccurage and even though they had our 2010 tax return showing our income was less than half of what they calculated.
So This is why I contacted the Head of Case Management. I got the name and number while I was in the hospital before the discharge fiasco and before they failed to notify the home health agency. And I called them from home and they called me back. Mind you I was now home with a husband who got dizzy if he stood too quickly, had only just begun walking around on his own a few days prior and was out of breath with the slighest amount of activity and three children and despite us all holding it together while he was in the hospital and doing “well”, thing were challenging coming home.
NO BODY TALKS ABOUT THAT
The COMING HOME after the Heart Attack
They assume, he lives, he does well, he goes home, yeah!
NO one realizes how much harder it really is, going home.
I tried to tell the nurses at the hospital….
The Case Manager, I don’t know that I got the chance, I did share some of this with the second one, who came to us just that once.
BECAUSE I HAD SO MANY OTHER THINGS ON MY PLATE
I never did get to speak to the Department Head at the Hospital. I left a detailed message and she called back and maybe spoke briefly to my husband because I was not home.
I think I need to send her a letter.
So I don’t leave anything out.
I could send this one, but I might need to remove a few jackasses and the like.
I am adding a note:
I don’t think I coughed once the entire time I wrote this.
It didn’t even occur to me til after i finished writing it and I realized my breathing seamed silent and my chest felt better- from not coughing so much.
The lung processes grief.