Help for Healing

Bitter & Sweet, living daily with grief


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Medicare Mayhem

Dad fell last weekend and wound up with eight stitches on his head.

Then they figured out he had heart issues (which probably caused the fall) and he was transferred to another hospital and had a pacemaker put in. All of this was new to us so there was a huge learning curve. Plus of course it’s emotional to have a loved one with continued medical problems. Then you add the lovely medical system which is sorely lacking in common sense and it’s enough to drive even the sanest person crazy.

I keep a medical journal for my dad. I am going to share just one day’s entry with you so you can share in the madness. Of course I have changed the names to protect the guilty.

Wednesday:

Called Hospital G to ask them to give the surgeon’s assistant my phone number in case she saw Dad before I could get to the hospital.

Surgeon’s Assistant E called (Yay! She got my message!) and said that dad should be ready for discharge sometime today

Called Assisted Living (where Dad now lives) to let them know Dad would need his stitches out.  They said, “They don’t do that there.” I told them the doc at ER told me that assisted living usually handles that. They said they would have to get back to me. Also said they could help dad with getting dressed, etc. because his arm will be in a sling for six weeks but they would have to charge extra.

Called Assisted Living again to ask why scripts require a two week notice, also asked about the stitches; she said she would voice my concerns to the correct people and then have them get back to me.

Nurse S, hospital charge nurse from Hospital G called; said that dad had been evaluated by PT and was unable to walk properly, even with a walker; he would not be released and needs rehab; crap!  he will miss Thanksgiving 😦

Social Worker J from Hospital G called; told her I had heard the news; she said the problem is that medicare would not pay for rehab so it would be all private pay; I asked why and she said he needs to have been in a hospital for 3 overnights to qualify; I reminded her that had been transferred from Hospital M; she said the problem is that his status was “observation” which does not qualify; she was going to do some research and get back to me

Called Hospital M’s president as I had met him the day before; his assistant answered; I told her the situation and asked if they could change his status; she said their patient advocate was on vacation this week; I needed to call Patient Advocate L from Hospital Ge and she would communicate with the right person

Left message for Patient Advocate L and paged her; continued to do so every 30 minutes

Called the number I had for Medicare; 30 minute wait so I left a message

Patient Advocate L called back; said the criteria for hospital status is very strict so it can’t just be changed; if they do, we could end up having to pay for the hospital stay too; said she was going to pull in Head of Discharge Planning M to get a team together to try and find a solution

Social security called back; I had the wrong number for Medicare; called Medicare and they said that acute inpatient rehab (in a hospital) is covered by them and does not require a 3 day stay; sub acute skilled nursing facility rehab is not covered without a 3 day hospital stay; I asked if there was an appeal process and she said no

Talked with Nurse S about this information; she said Dad would not have the stamina for hospital rehab; it is at least 3 hours of intense therapy daily

President’s Assistant at Hospital M called back with another name because I had left a message for her saying Patient Advocate L hadn’t called back; I told her I didn’t need it and a team was working for us

Talked again with Nurse S; she said that if I took Dad home with me, he would need to be watched 24/7; she could set up services at home if his primary doctor (who is at Assisted Living) would write the orders

Assisted Living Head Administrator S called back to address my concerns; she said that express scripts requires time to deliver and that’s why it needs 2 weeks; I explained that wasn’t what I was talking about; I was referring to Assisted Living Doc J ordering scripts from them on the day I ask for them; it wasn’t happening; she said Dad would probably require assistance with dressing, shaving, etc. because of the sling for 6 weeks and I asked her for a ball park rate of how much that would cost; also, explained that we needed orders for rehab if he came to my house; said she would have to call back

Nurse S said the team made Dad’s status in patient as of today; if he stays until Saturday, medicare would pay for rehab

During all this time, dad was extremely out of it; I found it he had taken a narcotic for the pain (which explains it; he reacts very strongly sometimes); he was sitting in a chair, bent over sleeping; at one point he woke up and asked about the macular degeneration grid he uses for his eyes; I asked Nurse S about it and she wasn’t familiar with it; I suggested she google it; she did and printed him up a grid.  Then it occurred to me that if he took the meds before the PT evaluation, that could have effected his walking; I talked to the staff but they insisted that he was alert and that had nothing to do with it; I disagreed, but there was nothing I could do about it so I dropped it (Common sense tells me that if the meds had him drooling on himself for five hours, it probably effected his balance while walking, but I got the ‘ol “WE know cardiology patients” stuff… Well, I know my Dad!!)

Social Worker J called back;  I had asked her to look into Dad’s secondary insurance; she did and they will not pay for rehab either; rehab is $490 a day and requires a 7 day advance payment before start; I told her that the team had changed Dad’s status; she said no one kept her in the loop and that is not an option and we might also end up paying for the hospital stay; she said she would discuss things with Discharge Planner M and get back to me

Assisted Living called back with the administrator and social worker on the line; they said they felt that the best option for dad was to be released to them and Doc J would write an order for rehab there; I (or family) would have to come at least twice a day to assist dad with dressing, undressing or else we would have to pay; 2 showers a week is $150/mo; the rest would be $300/mo, ballparking about $450 extra a month; I said I would have to discuss this with the team and get back to them

Surgeon S’s office called to set up a 2 week follow up appointment

Talked to Social Worker J; said she is out of the loop now; Nurse S is the one who will follow up

Nurse S said that Surgeon S’s assistant noted that dad’s blood pressure dropped; this is a legitimate qualification for status as an inpatient stay; he will be moved to another part of the hospital in the general population vs. the cardiology unit; if he stays until Saturday, he will be eligible for rehab being paid for (Now how is that for common sense? Now we are hoping dad DOESN’T get well so he has to stay in the hospital long enough so that insurance will pay for the services he needs!)

In between all of this, is the rest of my life.  Call from a school social worker to discuss a client I have.

Call from my client; I forgot her appointment; started crying because I really, really needed the money this time; she was great about it, but I felt awful

Sent 33 texts to try and get rid of my sabres tickets for last night because Frankie was already going with a friend; too exhausted to go but seats were $150… ended up going so they wouldn’t be wasted…

All said and done, I sat Thanksgiving morning and counted all the phone calls I had the day before, just for giggles. Wanna guess? 59!!!

No wonder I’m nutso…lol

But here is something nice. When I finally left the hospital last night, I was crying on the phone out of exhaustion and frustration, talking to my sister. The parking dude told me I didn’t have to pay the 7 bucks that I usually have to pay for parking. I told him thank you and I planned to cry every night so he would let me off the hook. He smiled at me.

 

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Good Grief!

My clients teach me more about life and human relationships than I ever teach them. It’s been a week with some very moving sessions. The first one was a woman who is confused and upset about loving and hating her former husband at the same time. And why miss someone who hurts you terribly? I saw myself in her. I was only with Jay four months and I am still regularly tortured by the same thoughts she has. I can’t believe how difficult it is to move forward and how deep the pain still is. This woman had ten years invested and had children with him. Trying to reassure her, I realized I am usually much too hard on myself. Loss is complicated and difficult, but it is what it is. No way around it, only through it.

Yesterday, I had a session with Natalie. Natalie is only in her early twenties, but she has one of the oldest souls I’ve ever met. She lives her life outside the box, yet has a simplicity about her that is soothing and refreshing. A couple of months ago, she found herself with an unexpected pregnancy. Talk about mixed emotions. She and her significant other did a tremendous job of managing the complexity of the excitement with the difficulties of an experience they weren’t quite prepared for.

They got through the first trimester only to have a frustrating week of sickness and illness that had no apparent explanation. And unfortunately, a team of doctors that you could make a case for being nothing short of negligent. This turned into one of the most difficult and traumatic miscarriages I have heard about.

Natalie and her partner took this new experience on with the same grace and maturity that people twice their age find hard to accomplish. She talked about trying to cope with this loss that seemed to be hanging in the air. Having had a miscarriage myself, I could understand. It is incredible that these tiny not-fully-formed lives completely capture our hearts and devastate us with their loss when we haven’t even laid eyes on them.

Yesterday she came in for session, and had just had access to the pathology report. Turns out she had an infection that is relatively rare which caused preterm labor. The baby was a perfectly formed boy.

Suddenly, her grief had a shape, a face, a gender. There was great comfort in knowing that he was healthy and perfect.

And yet… doesn’t that make it even more tragic? And maddening that earlier intervention from the medical system might have prevented this. She understands that maybe not, but maybe it would have.

Again, the bitter and sweet complexity of human emotion and connection. Such happiness and relief from knowing, mingling with gut wrenching grief.

At the end of session, I stood up and said, “Good grief, Natalie!” which I realized was a bit of a pun. Natalie said it was ironic that I said that because of being a grief counselor. Then it hit me. My God, Nat. There it is. The perfect description of it all. Good…Grief. I watched her face as she caught it too. It was one of those sacred therapeutic moments that don’t come all that often in a career.

I hugged her goodbye, but I couldn’t hold her tightly enough to let her know how incredibly grateful I am that she trusts me to share in her journey. What a privilege to share in someone’s pain and joy.

Thank you my dear Natalie. You are my teacher.


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The Real Talent

Some of you that know our family might remember when Frankie was 6 years old in kindergarten. It was his big year. He wrote a story called “The Kite and the Snowflake” and won third place in the Reading Rainbow contest out of 700 entries. (He clearly should have gotten first, of course!) It was an amazingly thoughtful and poignant story. The principal made it into an actual book and held a school-wide assembly for him to read it to the student body. He got invited to the Board of Education for the same. It put him on the map. I credit his teacher for discovering it, buried in the middle of a scribbled journal.

He is now 15 and I ask him to clean out his folders once every six weeks. He puts everything in the recycling bin and then I fish it out. I keep a few things here and there for his memory boxes. I caught this poem written on the back of a sheet of paper. I confirmed he actually wrote it and he even gave me permission to post it which surprised me. Anyway, I know I have a mother’s bias (obviously) but I think he is the real writer in the family. Let me know if you agree this is pretty great. It has the hallmarks of a teenager that make you chuckle, but overall I thinks he captures a deep understanding. The assignment was to write a poem from a Jewish perspective. (Thank God I never got assignments like that when I was in school!)

Where is my God?

My fellow Jews and I stand alone.

There’s nowhere to go or no place to call home.

My friends hidden behind ash.

Here I stand with no cash.

We are torn down by being beaten or blasted.

Maybe Hitler thinks all Jews should be trashed.

One thing that is not really cool?

All Jews are segregated from the great German schools.

Our God seems to be unreliable.

Therefore, us Jews are considered undesirable.

My depression is growing because my God isn’t near.

I can’t numb the pain because I can’t afford beer.

One thing is for sure, my God is not found.

Life is hard without Him around.

 

Yep, I’m a proud mama.

 


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Endings

If you want to read the precursor to this story, check out “Shut Out.” The end of the story is not a good one and I wish I could say it isn’t so.

One of the days that Ed had texted and asked me to visit him and his daughters asked me not to come, I reached out to someone at Roswell that I had met who worked with “family engagement.” While I wasn’t sure what that is exactly, I wondered if my situation would fit in. I forgot that I called him, but a few days later he got back to me.

I told him that I had decided not to go to the hospital, but I said I would be interested in knowing what his opinion on the situation would have been. He went around a few times, but actually called me back later and said that the bottom line is really about the patient’s wishes being respected. While we both understood that accepting death is difficult and some families just refuse to go there, it wasn’t about that. It was about Ed. He suggested that he talk directly to him and find out what his wishes were. If he indeed wanted me to visit, then perhaps the social work department could get involved to help the family shift their thinking about how best to support their father.

I cautioned him by reminding him that the family believes they are doing the right thing for him so this would be an extremely delicate situation. It would have to be handled ever so carefully. He agreed and said he would get back to me.

He didn’t. Instead, I got a scathing text from one of the daughters that was addressed to me, and copied to the other siblings. It spoke of how disappointed she was when a social worker approached her because her dad’s counselor and called to complain that his family was keeping her from seeing him. She told the worker that I was not his counselor, etc.. She also went on to talk about my creating nonsense at a time when they are focusing on his well-being.

I was stunned. And angry. I texted them all and said that it was not true and that I had their father’s well-being in mind at all times. I told them I would like to sit down and talk with them and straighten things out because it’s much too important to text about.

I never heard from any of them again. I texted. I called. I left messages. I texted and called Ed but never got responses. I didn’t know if his phone was being monitored or if his family had told them I lied to the hospital and they all hated me.

I thought and thought about how to let him know I cared. I have several cards he’s sent me over the last few years where he called me his best friend. I would dare say I might have been his only friend. This was horrible. I decided to send a card to the hospital.

Only he wasn’t there anymore. I started looking for him in various rehabs that we had talked about as possibilities for him to go to. I peppered the search in between the calls to him and his daughters.

This weekend I found out the truth. I found his obituary. He was gone. And his wake and funeral were over as well. I reached out again to the family to ask where he was buried. No response.

To say I was devastated doesn’t really describe it. It was such a complex ball of emotions. Of course there is the loss of a very, very dear friend. There was shock that this family despised me this much that they wouldn’t even let me know about the wake. I know in my heart I absolutely did not one tiny thing wrong to deserve their hatred. Not one. And now I’m also experiencing a great deal of anger. I’ve had boatloads of loss in my life and I absolutely did not need to have a loss that was the result of a bad ending.

And then there is the anger at myself. Because I have been so depressed lately, I chose not to go to the hospital because I just didn’t have the strength it would have taken to stand up to the family and honor his wishes. If I wasn’t so depressed, I would have taken my strong patient-advocate self. But instead, a wonderful man asked me to come and he died thinking I ignored him.

I have always said beginnings and endings are crucial in life. You can’t have one without the other either. I was thinking about how sometimes people behave badly and then at the end of their life, they make peace or say they are sorry. The ending changes everything. Maybe it shouldn’t, but there has been lots of forgiveness that happens at the end. And I say hurray for that.

I realized that I assumed the reverse is true. If the ending is bad, it negates any good that happens before that. Darren reminded me that is not the case. He said the months and years before this ending, I was a good friend to Ed, and he was a good friend to me. Good enough for him to call me his best friend. The ending was only a small space in comparison. When he was lonely and sad when his wife was in the nursing home and then eventually died, that is when I was there for him. I mattered to him.

Thank you, Darren. You are so right. The reverse is absolutely not true. While the ending was sad and unfair, his daughters can’t take away the years of our friendship. All of the walks, talks, hugs, fires, and pool parties meant something. I love you, my dear friend. I am just sorry I wasn’t able to tell you one more time.


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Callouses

Today I went to see my very much-loved doctor, Grace. My sister is in town this week so she went with me. I invited her because today was a depression/medication appointment and I know I worry my sister all the time and thought it might help her know who is watching over me.

It was a good appointment, as always. They are usually running behind because Grace spends so much time with every person. I can’t get mad when I have to wait because I know why it happens. Today, though, there was not even a wait.

We went through the medication thing and we added another one to my regimen. It needs to be taken in the morning. I need to figure out how to make that happen. I know it sounds like a simple thing, but sometimes I don’t get to my pill-box until 4 in the afternoon. Actually, today it was 5 pm. I will come up with something to train myself.

Scott, my counselor, suggested I do some research on Dr. Daniel Amen. Being the compliant client I am, I looked him up. I am going to spend time weekly reading/listening to some of his stuff. He is a psychiatrist that uses SPECT brain scans to treat his patients. He says we need to treat individual brains rather than clusters of symptoms. He made total sense to me and I was sold. Brain scan is not something I’ve tried.

I asked Grace and of course she knew what I was talking about. She is always mentioning the latest research on such and such. Do we even have anything like that in Buffalo? There is ONE doctor. That was actually more than I thought. I was envisioning traveling to Chicago regularly. She said I will probably have to wait several months, but that he uses SPECT scans and then farms to his mid-level staff once you are seen and diagnosed. That’s fine with me. Grace was in favor of it because she knows I have tried just about everything known to humankind to beat my depression and haven’t been able to. (I still think meeting a man who is actually a decent partner would help tremendously, but we all know how THAT has worked out!)

I will call his office tomorrow. I don’t care if I have to wait a year, at least I will get the process started. Grace, my sister and I chatted about my symptoms. We all agreed. Somehow, even though I seem to “heal” and “move on” from loss, I carry the scar with me throughout my entire life. That is why I feel so exhausted and used up, like my soul has been chipped away at for decades and I’m finally calling, “UNCLE”!

Then Grace said something that struck me. She said that when a bone/muscle is broken/injured, scar tissue forms over scar tissue. She said the fascinating part is that scar tissue can become stronger than the original bone ever was. I had never heard that. I just looked at her through my watery eyes and said, “Why do I feel anything but strong? I feel so spent.”

I don’t remember what her response actually was. I did walk away feeling like maybe I’m just not there yet. Like maybe my scar tissue is still just forming. The strength may be around the corner. Look out, because if this is true, I am going to be STRONG LIKE BULL with all the scar tissue I have accumulating.

Thanks Grace, and thanks Sissy. I am lucky to have people who care about me and weep when I weep. I promise, I will keep trying to heal.


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At 50?

I can’t believe at age 50 I feel like I’m back to square one. I know I’m not alone in this. Who would have ever believed that the big questions like career and partners would still be up in the air and a struggle when your life is more than half over?

I did a presentation this week about two hours away. A whole group of us participated in a death/dying conference like the ones we had done in Buffalo. It went great. Almost every speaker was dynamite and the audience seemed receptive and even enthusiastic.

I was the last speaker of the day which was tough because I knew everyone was tired. It went over extremely well though and I knew I had reached people by the feedback. The problem was, I didn’t make a penny.

So frustrating. I know I possess a good skill set. I can speak and I can write. I can do them both very well. The other panelists all came from companies or hospitals they represent. They are getting “paid” because it is part of their salary. I’m the only lone ranger in that sense so if there isn’t a speaking stipend (which 90% of the time there is not) then I can only hope I sell books.

I didn’t sell one book. I watched the woman next to me sell about 10 books. Same topic, different angle. Both of us good speakers. WTF?

This is not new. This is the scenario 99% of the time. I am well past the point of being able to write/speak simply because it is helpful to others. My heart is there, but my pocketbook is not. I am the sole breadwinner in my house. I have a family to provide for. And my social security is being cut in half in less than a year. Holy crap that is scary.

I’m going to have to reinvent my career and I have no idea what to do. Well, actually I have tons of ideas, but knowing which path to follow is confusing at best. Add coping with severe depression on almost a daily basis now, and it is beyond overwhelming.

What do I want to be when I grow up?

I thought that was settled years ago. I even had a brave moment this week and attempted to go on a date. I got stood up. I know it isn’t personal because we hadn’t even met yet, but cripes. Stick your toe back in and find out the water is frigid.

That’s was scary about being so depressed. You have to take risks in life and be proactive if you want to meet your goals. But if you are already down and out, you can’t afford to fail. At anything. What a freaking catch-22.

For the moment then, I will just stay stuck. Not sure what the heck to do with myself. I know I can’t stay this way, but I’m terrified to do anything else, with any of these areas of my life.

Maybe 80 is the new 50. Maybe I just have to wait another 30 years and things will fall into place. One can only hope :).


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Shut Out

I am presenting next week as part of a large panel and am going to attempt to integrate Power Point for the first time. I know, I’m behind the times.  They are very simple slides, but I’m long past due for getting a more polished look for my lectures. Same topic as usual. Why is it important to confront the uncomfortable concept of death and dying?This presentation is going to be a little different in that besides talking about my experience with Tim, I am also going to talk about a current situation.

I met a very, very dear friend after Tim died, who has become in some ways like a second father. He’s just a couple of years younger than Dad and bears some physical resemblance to him as well.  He has actually met my dad a few times. He has been in the hospital the last several weeks. I have visited when I can, but recently the family has requested no visitors outside of family. I certainly would not ever want to offend the family, especially in such a stressful situation. The problem is, what is the family wants something different than the patient.

My friend had reached out to me and said he wanted me to visit. I even double checked to make sure I understood correctly. That is quite a dilemma. Why would the family not want me to visit? I don’t know, but I can attempt to make an educated guess.

Things can sound quite sensible in theory when you are talking about them outside of your personal experience, or especially outside of an actual acute situation. When you choose a health proxy, for example, many people think the appropriate person would be the person you are closest to. Actually, much more important than that, the proxy should be the person who is most likely to honor your wishes. Sometimes what we want for our loved ones is not what the actual patient wants. When the time comes, you might find it difficult to do what your loved one wants if it is different from your own desires. If you are emotionally in deep, doing the “right” thing (in this case what the patient wants) can become very cloudy.

My often mentioned friend Darren articulated something that really struck me. We were talking about this situation and in general about how I often am trying to do the right thing and somehow end up “being the bad guy.” He said it is because I bring light to the dark corners of the room that haven’t been swept out yet, because I’m not afraid to go to the difficult places. I loved that. Not sure I deserve that much credit, but it felt really great to hear.

One time when I was visiting my friend, he started to open up to me about what I loved “end of life stuff” such as how his illness was affecting his family. Then there is the big question of why is this even happening? That is the one I always say I don’t think there is an answer to. Why do we die? Because humans don’t live forever. We all have to die at some point. Every one of us. Because there are cancer cells we can’t control. Because there is disease, violence. Because people make bad decisions sometimes. But sometimes it is just because we are mortal.

I did my best to work through the labyrinth with my dear friend. In the background, one of his family members was bustling around saying things like, “Don’t worry. This is just a bump in the road,” or “You will be back to normal in no time.”

I cringed. He has stage IV cancer and there are no treatment options left. No, this is more than a bump in the road. This is nearing the end of the road. No, he will not be back to his old self.

I think he must know deep down. I think that is why he wants to talk to me. I can handle the conversation. I wonder if deep down he understands he can’t really talk to his family member. But now it feels like I’ve been shut out.

I don’t know how it will play out. At this point, he has changed his mind about visitors. Was he told that I am acting crazy? Or is he just not up to company? All I know is that at one point he specifically asked me to come and I couldn’t go. Well, I could have but I would have greatly upset the family. That is certainly not my goal.

It’s all heart breaking. I dream about him and I keep thinking if I don’t get a chance to see him again, I am at least relating to him on that level. I just don’t want him to think I have abandoned him in this very fragile time of his life. He has given me hugs and hand holding many, many times when I’ve been down and out.

Keep him in your prayers, and the family as they grapple with accepting the upcoming loss of such a wonderful human being.