sharing my life experiences, reflections and insights as a mother, a writer, an Occupational Therapist, an unschooler, and and a spiritual being having a human experience

Posts tagged ‘loss’

Words Not Spoken: 6 months after his heart attack

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?

Hell yes!

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.

Ok

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,

so

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.

Hmm….

Coincidence?

I don’t think so.  Just now realizing that one….

…and it is still sinking in….

ahh, other stories to tell.

Back to.?

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

?WTF?

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.

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The other side of depression, Bipolar Depression

I found this post in my drafts written February 12, 2018.

For some reason, I never published it. I suppose I felt it was unfinished.

Two months have past since I wrote it….Today is Monday April 9,2018.

I will first share the post as it was written two months ago and add to it at the end.

Written February 12,2018:

I decided today was a day to write about myself and my journey with depression.

I reread the post I wrote 8 months ago, shortly after I started on my current anti-depressant,

Seeing the Horizon

That’s just the way it is

Some things will never change

That’s just the way it is

Ah, but don’t you believe them

That’s just the way it is

Some things will never change

That’s just the way it is

Ah, but don’t you believe them

Bruce Hornsby sings in my ears as I write…

When I am in the midst of depression, I feel stuck like the words of the song, that’s just the way it is.

Yet, I never lost hope, but don’t you believe them.

I have now been on Prozac for 8 months and I feel I first really saw improvement back in October, after 4 months on medication. I insisted my doctor start me on 10 mg before moving up to 20mg for an easier adjustment for the medication. It’s what we did for my daughter and was recommended to minimize side effects and so I wanted to do the same for myself. It was also how the nurse practitioner had started me on a different anti-depressant 2 years ago when I first asked for medication help for my depression.

Here I am on the other side and looking back

Now if you’re feelin’ kinda low ’bout the dues you’ve been paying

Future’s coming much too slow

And you wanna run but somehow you just keep on stayin’

Can’t decide on which way to go

Yeah, yeah, yeah

I understand about indecision

But I don’t care if I get behind

People livin’ in competition

All I want is to have my peace of mind

Boston says it so well. Thank you amazing musicians and azlyrics.

Reading my post Seeing the Horizon….

I feel that I am in a weird fog.  I don’t want to use someone’s suffering to figure out my own life. Yet this expereince today has affected me. I want to take from it to move forward in my life and in my choices.

In my post, Seeing the Horizon, I shared an experience I had going to a new location for my writing time and discovering a man on the floor. My first thought was he was sleeping, which seamed so silly after the fact. He had collapsed, fallen out of his booth onto the floor face down on the ground and I froze, witnessing the restaurant employees try to figure out what to do, offering him ice because he was clammy. And I stood there frozen, knowing what to do but unable to make myself step forward and speak up, “I know CPR”.

This experience and how I handled it has haunted me since it happened. I came to some peace with myself realizing it had triggered my PTSD from when my husband had a massive heart attack and cardiac arrest in my own home. I was so thankful the medics arrived before he went into cardiac arrest. I was grateful that a police officer showed up rather quickly after the restaurant employees tried unsuccessfully to help the man. One employee knew to roll him gently onto his back and someone called 911, while I sat there paralyzed.

I recently completed a 6 week Resiliency Course with the amazing EFT Master, Jan Luther and founder of The Ego Tamer Academy and Author of the book, “Grief is Mourning Sickness”.

This course involved 6 intense weekly phone calls and some other individual work with tapping (EFT, Emotional Freedom Technique) along with other exercises as part of a deep healing experience.

In my own personal work, through the help of Jan and the “borrowed benefits” of my group members, 5 other women, I discovered a connection between my own issues with medial professionals who have failed me and my children in getting the help we need with this experience.

This experience where I failed to respond to help this man in need.

In this realization, I was able to forgive the medical professionals who have failed my family. We are all human and we all make mistakes. On some level, there is still some underlying frustration with the failure to get help for my children when we really needed it. Yet, I have learned that moving past this resentment and anger is healing. Healing to myself including the ability to forgive myself for my own mistakes.

I have always been my own harshest critic.

In reflection, I have continued to move forward with great strides over the past two months.

I went through a long period of only needing 5-6 hours of sleep and getting up very early and accomplishing many things and jumping into many new things. While enrolled in the 6 week Resiliency Course, I realized my job of 8 years was not serving me and the universe had been pushing me to move on, and I had a difficulty phone encounter with my boss that led me to moving forward on my job search process that I had already started due to lack of hours. I also interviewed for and accepted two jobs, both “PRN” work, meaning on an as needed basis which is my status of employment at my other two employers. I have worked PRN for over 16 years since leaving my part time position when my daughter was born.

I was liberated when I moved away from the job of 8 years that was no longer serving me, nor providing me a pay check.

I found new work close to home and a better rate of pay.

I have been an Occupational Therapist for 25 years and for the first time in 21 years, I have found a position with a higher rate of pay than I have previously received. This is the nature of healthcare jobs in 21st century America.

I am still in process of completing online requirements for the one employer. I have begun work for the other employer and am enjoying my 3 mile commute. I have worked at this facility in the past and so I knew several of the employees when I interviewed for the position. Being a familiar place, helped ease my transition to the new job. Change can be hard even when I am not depressed.

I have come to realize that I feel I have had some underlying depression since my teenage years. Most certainly since the challenges that came about in my life after moving when I was 12 years old, just prior to my 7th grade school year. And all the challenges of puberty only added to the struggle for me. I had some bigger issues in college my senior year when my relationship with my boyfriend of 5 years ended. I think the depression was mild until..

Maybe until my daughter was born and the challenges of being home more and juggling the needs of 2 children, or later when I was trying to conceive our third child and having no success but having hot flashes instead. Even then, when I look back, that was a relatively happy period in my life. I was struggling in that year before our third child was conceived and then when I was 3 months pregnant, my husband lost his job. The very job that helped me to stay at home full time and for us to make the decision to have the third child I had always wanted.

My daughter’s OCD symptoms began about this time, but we did not acknowledge it fully until it exploded a year later, when her baby brother was one year old and she was 8 years old.

That was 8 years ago…

The following year, 2011, my husband had his heart attack.

6 months after his heart attack when he had completed outpatient cardiac rehab, I developed Bronchitis that was recurrent for over 6 months and then got in a car accident just over one year to the anniversary of his heart attack.

May 2011 and May 2012: challenging times

My car accident in May of 2012 was far more devastating to me than my husband’s heart attack.

I became a pessimist.

And I wondered how that happened, because I was always the eternal optimist.

Yet, I knew “life had dragged me down”…

Songs like this have kept me going. Music is my therapy.

I will close with the words of the late, great Tom Petty for he has been one of my biggest inspirations over the past several years writing about my depression.

Well, I won’t back down

No, I won’t back down

You can stand me up at the gates of hell

But I won’t back down

No, I’ll stand my ground

Won’t be turned around

And I’ll keep this world from draggin’ me down

Gonna stand my ground

And I won’t back down

(I won’t back down)

Hey, baby, there ain’t no easy way out

(I won’t back down)

Hey, I will stand my ground

And I won’t back down

Well I know what’s right

I got just one life

In a world that keeps on pushin’ me around

But I’ll stand my ground

And I won’t back down

(I won’t back down)

Hey, baby, there ain’t no easy way out

(I won’t back down)

Hey, I will stand my ground

And I won’t back down

Hey baby, there ain’t no easy way out

(I won’t back down)

Hey, I won’t back down

(I won’t back down)

Hey, baby, there ain’t no easy way out

(I won’t back down)

Hey, I will stand my ground

And I won’t back down

No, I won’t back down

Letting Go of “My Story”… of loss

Grief is a multi-faceted response to loss, particularly to the loss of someone or something to which a bond was formed. Although conventionally focused on the emotional response to loss, it also has physical, cognitive, behavioral, social, and philosophical dimensions. While the terms are often used interchangeably, bereavement often refers to the state of loss, and grief to the reaction to loss.- http://en.wikipedia.org/wiki/Grief

Yes, I just quoted Wikipedia, this is my blog, not a research paper.

I choose that definition because of the last statement ” grief”  “the reaction to loss”.

Merriam- Webster defines it as “deep sadness especially for the loss of someone or something loved”.

Sadness is a reaction to the loss. There are many other reactions to loss, other feelings and states of being.  I think they are missing something.  I personally think Wikipedia does a much better job of defining it than Merriam-Webster.  It is muti- faceted.

And I am going to go one step further and define it as reaction to change in one’s life.

We can grieve the loss of a job, change in our financial situation, change in our life roles, and so many other large and small changes in our life.

Change

It’s time for a change…

Today, I decided to let go of my story of loss.  I wrote out all of my losses over the past several years, all the big ones, and decided I would let go of “my story of loss”.  What does that mean? I don’t know but what comes to mind is Debbie Ford.  And so I googled to jog my memory and found this:

http://www.debbieford.com/media/NewAgeRetailerArticle.pdf

The following is taken from an article in the  New Age Retailer from Jan/ FEb 2007.  The author and editor in chief is Kathy McGee.

You will find the following starting on the bottom left of page 5:

The interviewer, McGee asks Debbie Ford how does she get rid of her self- criticism and self- doubt.

Debbie Ford replies:

I haven’t gotten rid of it.  When I dip into my story (the negative internal dialogue that keeps us stuck), it’s there anytime I want to revisit it.  It’s part of the collective unconscious, it’s part of our humanity. But today, I know that’s the inside of my story.

When I feel like I’m being self-critical or insecure, I know that I’m deeply in my humanity. Inside our humanity, inside our story, it’s all fear-based.  We compare ourselves, think there’s something wrong with us- we’re not smart enough, pretty enough, don’t have the right whatever.

I try to pop myself out of my story and into my divine self.  I ask myself, “What do I have to do right now?  Do I need to get on my hands and knees and pray?  Do I need to meditate?”  it’s as simple as asking, “If I totally trusted and were in connection with the Divine right now, what would I hear?”  Start to listen to that new frequency, and it raises you right out of your story.

I think what you just asked me is so vital to the process, because most people are trying to get rid of their self-doubt, their self-criticism, and their fears.  you can’t get rid of it.  It’s part of your humanity.

And then the interviewer, McGee, sums up the rest of it when she adds, “And by trying to get rid of it, we’re creating more fear and digging ourselves deeper into our story.”

And Debbie goes on about fear saying that it is a healthy emotion.  She says to identify the feeling of fear and ask what it looks like, what it feels like in order to give fear its own personality, different from your own.

“Anything we are identified with has control over us. So, if you’re just scared and in fear, fear has total control.  If you can make it separate from yourself, you will have control over it.  If you give fear a different name, face, smell, color, or size from yours, it becomes something other than you.  You can say, “OK fear, I see you.  What do you need from me to lie down and be peaceful?””

Today, I wrote the post, What Does it all mean?, and now I can understand that I was “in my humanity”.  I was also in my story and therefore in fear.  What is wonderful is that I have a better understanding of what it means to “let go of my story”.  I have only read Debbie Ford’s First book, The Dark Side of the Light Chasers, but here I am understanding better what I sought to do when I first posted the title for this blog.  The beauty is that I had no idea where I would go with this when I wrote the title.  I only knew that I was in fact, ready to let go of my story of loss.  I used prior knowledge and found my answer.

I don’t have to get rid of my story but I can move away from it. I can also see when I am “in my story” and use my tools to step outside of it if I choose.  No matter what, I don’t have to beat myself up about any of it.  I can be ok with being in my story and with choosing to move out of it.  Because I choose, when I am consciously choosing, to move out of fear, I know that I can have more moments of moving out of my story and stepping back from it.  Even Debbie Ford, author of 7 books, speaker and founder of a Life Coaching Business, admits to still  having dark days.  It is a process.