Help for Healing

Bitter & Sweet, living daily with grief


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Is It Me???

As I continue the drama of finding Dad the care he needs/wants, I have been astounded at the majority of medical professionals we are dealing with. I say I know these things, but when I am actually interacting in reality with it vs. speaking theoretically, I can’t believe things are as backwards as they are.

While most people wouldn’t say they believe this, in practice they betray they do. I am realizing that even medical peeps hold to the idea that every person wants to live as long as possible. If they don’t, then there is a mental illness (like severe depression) or they are “not of sound mind.”

Dad has literally been badgered repeatedly even though he has been crystal clear and actually has it in writing on every kind of medical and legal form possible.

Are you sure you don’t want an antibiotic?

Do you understand you may die from infection without an antibiotic?

Over and over and over again. This week’s appointment resorted to actual bullying and attempted manipulation. Dad stood his ground and I eventually exploded at them. The doc responded with:

“This is not medical care in America. American medical care does not work like this.”

I know palliative care is relatively new outside of hospice, but I can’t believe he was serious. He is even young. Uneducated, uninformed and therefore treating patients unethically.

Caring for a loved one with a debilitating disease, eventually losing them, etc. is so unbelievably exhausting and heartbreaking. But dealing with this nonsense repeatedly is beyond maddening. I literally shake with anger and frustration. No idea how to fix the mountain of an issue. How can we change facilities when the doctors don’t get it? And how do we change doctors when they are trained to believe death is failure?

Systemic issues aside, I have my father to care for. Please keep him and my exhausted family in your prayers as we attempt to navigate an incredibly complicated set of diagnoses with treatment options that are Catch-22’s at best, in a system that is utterly broken and unsupportive. What a sentence that was.

One moving, profound (to me) bright spot. Frankie turned 16 this week and asked me a ton of questions to try to understand what is happening with his grandfather. He absorbed the horrible information and asked for clarification that indicated that he indeed understands the depth of the problems and their significance.

He asked if Grace, his and my doctor, would be able to help Grandpa. I said that she is an excellent doctor and would respect his wishes but is unable to take on any new clients. He thought for a moment and said, “Mom, why don’t you and I give her up so she has room for him?”

I cried later in my room. I love that kid. He tries to pretend he’s selfish and uncaring because he’s a teenager. He’s not fooling me. He has an amazing heart.

Give yourself some time to think about these issues for yourself.


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I WANNA SCREAM!!

Sigh.

Heavy sigh.

Another heavy sigh.

My poor dad.  Our medical system stinks and he suffers for it. Being on palliative care is supposed to make his life more comfortable. In order for that to happen, you must have a palliative doctor, or one that at least fully understands what it means. I have literally spent weeks trying to find him one. Guess why I couldn’t find one? Because there aren’t any.

Geriatrics continues to be an under-served field of profession. People don’t come out of school wanted to work in geriatrics. Palliative isn’t exactly the same thing, but you can see why they are closely related. In all of western New York, there isn’t a palliative doctor unless you are admitted to Hospice.

Having nothing to lose, I contacted Hospice. After phone interviews with me and my dad, I get the call back. No go. He isn’t qualified. His Parkinson’s has to be much further along. It’s a horrific disease that unfortunately waits a really, really long time before it kills  you. It just makes you suffer, sometimes for decades, with no hope of getting better. It just gets worse and slowly robs you of any control whatsoever. I listened to the nurse tell me what late Parkinson’s will look like down the road. It sickened me. I cried for a long time after I hung up.

He has had a backache and needs a pain pill. How simple is that? I’ve been running in a Catch-22 circle for four business days, hitting my head on the wall. Can’t get a prescription without making an appointment. I know that is SUPPOSED to be about practicing good medicine. My cynical (but unfortunately realistic) self knows it is more about getting more money from the office visit. What do they need to see? He’s an 86-year-old man with Parkinson’s who is on palliative care. He is supposed to be kept comfortable. Give the man a damn script. I can’t get him into a good doctor for another three weeks. So his three days of pain may turn into three weeks. Of course we can see another doctor in one week, but neither Dad or I care for him. He definitely does not have a palliative medical mind. He either goes to a doctor he doesn’t want (and still waits another week) or waits three weeks.

What pushed me over the edge was the Parkinson’s doctor. She could have prescribed something, at least to get him through a couple of weeks until he sees his primary. The answer came back, “I don’t treat backs, just Parkinson’s. He needs to see his primary.” I told the nurse about the week I have had. Can someone out there please be humane and give an old man some relief?

She said it’s not about being humane but there is all this controversy about pain meds now. Blah Blah. I know, but an 86-year-old man with a degenerative disease is not the person they need to worry about. It’s all so ridiculous.

All of this time, energy and emotional turmoil for me, and all the physical and emotional turmoil for him over a pain pill. There is another even more ridiculous saga over getting him physical therapy. I don’t even have the motivation to write about that too.

I’m an Aging Care Manager. I am supposed to help people “navigate our complicated medical system.” I can’t even help my dad. So frustrated.

Feel free to share any stories you might have. And if I am missing some loophole, for God’s sake please tell me ASAP.


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Anger with every Paragraph

As I continue to pursue my next career step, I was advised to read a few books. I just finished “Being Mortal” by Atul Gawande which I loved every minute of. I felt validated with a lot of the beliefs I’ve come to in this work, and I learned some new things where I am trying to make adjustments in my thought process as I try to assist others.

Now I am reading “An American Sickness” by Elisabeth Rosenthal. It is also validating, but it comes with extreme frustration. Almost every paragraph I read makes me angry all over again, learning about the things that happen in our medical system across our country.  Things that I have suspected and felt, but now know there is plenty of fact to back it up.

The kicker was reading about Medicare and the observation status problem for patients. It was exactly what happened with my father before Thanksgiving. I blogged about it and the madness of trying to get his care covered by insurance. The last paragraph of that chapter informed me of a law that Obama passed in 2015. Had I known about it, I would have kicked that hospital’s ass. They were definitely not even close to compliant, but were very clear what they would NOT do to help us because of their strict compliance to law. I mean, I do a pretty good job fighting for my dad, but if I keep learning more information, I really feel sorry for these folks in the future. Education is power!

I have mentioned several times in blogs and my books how much I respect my doctor. She is incredibly knowledgeable and very thorough. She truly cares about me and my family. But sometimes I have run ins with the staff, which unfortunately makes the same systematic mistakes that most health systems do.

This last week was very frustrating and maddening. Hell, I was ridiculously pissed off. When you are sick and scared, the last thing you need is to have unnecessary conflict with your medical team. I was told over four days, by three different health professionals on the phone that I definitely had the respiratory flu. I was prescribed antibiotics, told by another to throw them out, then told that the second doctor shouldn’t have had me throw them out.  By day four, I wasn’t any better with any of the medications I was taking, prescribed or otherwise.

In spite of being treated like an over-reactive hypochondriac, I called back yet again. I was finally sent to get a chest x-ray, which was the first time I had any kind of medical person actually see me. Pneumonia. Crap. Now they don’t know if I had the flu and it caused pneumonia, or I just had pneumonia all along. And it is too late to be swabbed now so I will never know. It’s important though because the contagion and treatment are very different for the two conditions.

I am going in tomorrow, a week after I first called to see the doc, just to make sure things are going in the right direction. I was able to talk to my favorite nurse today and she explained a lot to me. She explained that people tend to say that everyone gets pneumonia now but that it is indeed life threatening. I probably won’t fully recover for six months. And I absolutely have to sleep and rest and take it easy. (None of this was told to me before now.)

That’s always hard for me. My life requires a lot of time commitment and energy. If I don’t feel well, it is easier for me to hold back. But when I feel ok, it is difficult for me to remember that I am not fully recovered and I still need to take it easy. The steroid phase is really a factor as well. I remember vividly from Tim that steroids treat symptoms but not the disease. Tim looked great and worked but he was literally a few weeks away from death.

My poor dog doesn’t understand why she doesn’t get her long walks. And I have to just keep telling myself to slow down, rest, expect less of myself, etc.. I will feel better though after having the doc actually see me in person tomorrow as well.

Always try to educate yourself as the consumer. Unfortunately, even at the best of places, you still have to fight and advocate for yourself or your loved one. Your life could literally depend on it.


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More Madness

The good news from last week is that Dad was able to legitimately be in the hospital until Saturday and was transferred to Rehab. As always, there are great professionals, average, and not-so-great-at-all. It is still the policies and procedures that make me crazy because it is a set-up for nonsense.

Dad arrived with eight stitches in his head. We had been told they would need to come out in seven to ten days. I figured that wouldn’t be a problem because he is going to be in a medical facility anyway, right?

Right.

He was admitted Saturday and that is when I started asking questions about the stitches. Dad is going to need these out on Monday. Yep. Okay. I find out that “his” doctor (the one assigned) came in early Sunday morning. I asked if there was anything about the stitches. Nope, he didn’t seem to notice them. Please send a note to him because those stitches need to come out. Yep. Okay. Apparently my voiced concerns did not warrant a note in the chart so he wouldn’t overlook them.

I come in Monday and guess what? Doc doesn’t come in on Monday. Tuesdays and Thursdays only this week. Fine. Can you please make sure the note is there for him? Yes, it is.

I come in Tuesday. Doc came in the early morning. Guess what? He didn’t look at the stitches. The nurses are the ones to take the stitches out but they aren’t allowed to without “doctor’s orders.” This actually goes back to the emergency room because the doctor there should have written orders for them to be taken out, but he didn’t do his job either.

Now I’m mad because it’s twice he’s seen Dad and nothing has happened. I said I want the doctor on Wednesday to look at him then. Nope, can’t do that. Why? Because we can’t bill for more than one doctor. But don’t worry, they’ve only been in seven days. Um, no. It’s been 10. Not sure how they count, but I know they are wrong.

The billing thing royally ticks me off. I go in Wednesday and go to the social workers. I tell them that their billing protocol isn’t my problem. They agree. I told them it is shameful if a doctor can’t spend less than one minute to look at the stitches. It is merely a hoop that needs to be jumped through. The nurses know they need to come out, but they can’t do it without orders. The social worker tells me that the doc IS coming in, even though it’s Wednesday. Phew!

I go to the nurse and tell her to PLEASE not let the doc forget to see the stitches. She says that the social worker is wrong. He is NOT seeing patients today. I go back to the social worker and don’t really have to find the words because she can see the look on my face. She says she will take care of it.

A nice nurse eventually comes and says that if the nurse practitioner happens to show up, she will have her look at Dad. If not, the doc will be there in the morning. She reassures me the nurses have been checking every day and the stitches have not become embedded into his skin so it’s ok. She manages to persuade me that it really is ok.

I come in this morning on Thursday and the doc hasn’t been in yet. He still hadn’t been in when I left at noon. I had to leave for work (imagine that, I have an actual job!) so I asked the nurse to PLEASE call me as soon as the damn stitch thing is resolved. She had already told me that she agrees the stitches definitely need to come out.

As I’m writing, I still haven’t gotten a call. My niece is on her way there. I told her to text me what is going on. She won’t be aggressive with them like I am, but if it gets to be 3:00 and they aren’t out, I will have to go back for a second time today and it will be very, very ugly because I will be very, very mad.

It’s all just stupid. There is no other word for it. Continue reading


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Exceptional

I’ve noticed that people fit into categories. Take waiters, for instance.

There are those who don’t do their job. They goof up your order. Your food is cold. Maybe they charge you the wrong amount.

There are those who just do their job, the minimum amount. When I go to Denny’s and ask for a cappuccino, they say, “We only have iced, no hot.” Fair enough. Hot is not on their menu.

Then there is Sharon. She is Summer’s and my favorite waitress at Denny’s. We ask to be in her section. When I ask Sharon for a cappuccino, she says,”We only have iced, but why don’t I put a cup in the microwave for you?” Now that is exceptional service. She isn’t required to go the extra mile, but she suggests it and then she does it. Summer and I always make sure we tell her how much we appreciate her. We both have lives that involve taking care of others. We love going to Denny’s for an hour and having Sharon take care of us. It means the world to us.

People are like that in general. There are those who just aren’t around when you need them. You don’t even ask because you know they aren’t going to say yes. Maybe it isn’t their “job” or maybe it is, but it doesn’t matter. They aren’t going to.

There are those who help, but only if it is convenient for them. “Sure, I can do that because I don’t have anything else going on.” Sometimes this is the hardest group of people to deal with. It’s not like they never do anything, so they can easily defend themselves. Often times, these are the people who say, “All you have to do is ask. Any time, day or night. I’m here for you.” And they believe that it’s true. Often, there is little insight into their own behavior. Self-awareness is not one of their fortes. You are grateful for what they offer, but you know there are great limitations to what they will do.

Then there are those exceptional Sharons in the world. They are the ones that actually sacrifice. Sacrifice. Give something up for someone else. I’ve come across a few exceptionals lately.

One is Dad’s urologist. I asked her for her phone number so I could reach her any time of day or night. She gave it to me immediately. I’ve had to text her a number of times with all of his emergencies. She responds every time.

Monday was Labor Day. Dad was out of a medical supply that I frantically tried over two and a half hoursto find. It was beyond ridiculous. His doc and I texted several times. I traced lead after lead after lead just hitting brick walls thanks to medical bureaucracy, which generally has no common sense whatsoever. Eventually, I came across Eric’s name, the district manager. He said he lived in Syracuse and wondered if I could meet him half way. Syracuse is over two hours away. I could do it because I was desperate. But then Dad’s is another 45 minutes away.

Eric called back and said that no way was he asking me to drive on a holiday. He drove over two hours to arrive directly at Dad’s apartment with plenty of medical supplies. Then he apologized to me for having to call several times to find the right place. Are you kidding me? I couldn’t believe he did that for us. I don’t care if it was his company’s fault that Dad had run out. That man didn’t have to do that. It was a holiday for him too. I couldn’t even explain to him that I could care less that it was a holiday. But I was truthfully overwhelmed with the last five days with Dad’s enormous medical responsibilities. I had spent hours and hours every single day to care for him, canceling work, etc.. I could have cried for joy when he said he would take care of it. Total stranger. Eric, you rock!

The next day, the nurse from the doc’s office called. I had put a call in earlier because Dad was also out of his medication samples and needed a script. She called me back to inform me that he needed authorization from insurance and it would take several days. She said she would bring me samples. Where could I meet her? She chose a diner between our houses and I met her there. I asked if I could buy her breakfast. She said she would eat with me but that I wasn’t going to buy. She handed me 12 bottles of samples. I absolutely insisted I buy breakfast. Almost total stranger. Amy, you rock.

We all have legitimate bitches and complaints about the world we live in, and the people who occupy that world with us. But I don’t ever want to lose sight of those who are exceptional. They are truly out there. I try to sacrifice for others, but I fail at times. Thanks to those of you who remind us what it means to care sacrificially about others.


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The Old Man is Snoring…

It’s raining, it’s pouring… Both literally and figuratively.

It’s been quite a week. Last Friday, I was talking to my dad who was experiencing some bleeding. I could tell by his voice and his willingness to go to an urgent care center that it was a significant amount and he was scared. Sister Renee took him. I had tickets to the theater. (Jekyll and Hyde the musical at the Lancaster Opera House. You should go if you can. Absolutely phenomenal show.) I got a call that the doc was concerned about the amount of blood loss and wanted to send him by ambulance to the hospital.

I didn’t get there until after 11 pm. He was still in the ER but was preparing to move to a room. A little after midnight, Renee and I left once he was settled. My brother, Renee, and I all took turns each day staying with him. I am the primary health advocate though so I usually ask all the questions. On Saturday, they did a scope procedure on his esophagus. The doc came out and gave me the beautiful color photographs. Of course, I had no idea what I was even looking at. What I did understand, was there was not even a drop of blood. That meant starting prep for a colonoscopy the next morning. If you have ever had one, you know that is a nightmare.

I had to leave in the evening because Frankie had his first hockey scrimmage of the year. Colin tells me he’s the best player on the team this year so he’s going to shine. It’s at a college downtown so I drive us all there. Frankie started the game, and not even 30 seconds in to the first period, he gets checked. I mean, he gets checked hard. I mean, like the parents all went “ooo” when it happened. I joked with my friend that I might have to find that kid who messed with my son and kick his butt. It wasn’t a dirty hit, but Frankie went down flat. He got off the ice.

A few minutes later I realized he didn’t return to the ice. Frankie is a total toughie. He doesn’t complain about pain and I never even know he is hurt usually until I find the ice pack somewhere in the house. I texted Colin and asked if he thought Frankie was ok. Colin was already walking over to me. He said something was wrong and I needed to go over to the bench. I did, and my toughie said that yes, he thought we should go to the hospital. It is not an easy task to walk across benches and the distance of an ice rink with only one leg so Colin ended up hoisting Frankie over his shoulders. I took a picture but they said they would curse me if I posted it. Anyhow, we spend the next four and a half hours at Children’s hospital. Several x-rays later, they determined no break, but a sprain above the ankle. Crutches for a week then re-evaluation. I probably told 20 medical people about how the first 30 seconds of the first game of the season, blah blah. Poor kid. Thankfully, Renee said she would sleep at the hospital with Dad so I didn’t have to return. Got home about 1 am.

By Monday, Dad had a transfusion and they were hopeful that the bleeding had stopped. Renee came in to take over for me, and a few minutes after getting there did the most bizarre side step I had ever seen. I managed to catch her before she hit the floor. I got her to the chair and she slumped to one side. The hospital staff was most impressive. Within two minutes there were about 8-10 people there to assess what was happening. It sure looked like a stroke. Her BP was 202. They took her down to emergency and tested her brain and heart. Until her family was able to get there, I just ran between the floors of ER and Dad’s room, depending on who seemed to need me more. Renee was released without an explanation of why she had such an episode. What’s up with this? Three of my family members in the hospital within four days.

Tuesday, sister Janet flew in from Tennessee. Phew. Renee was going to meet us at the hospital, but I got a call and then a text from her. She fell again, this time in her house. I encouraged her to go to another hospital by ambulance, but she decided to stay home. I think they should check her ears for crystal formations. I didn’t think of it at the time because it looked like a stroke. I haven’t checked in with her today, but I hope she is feeling ok. She really can’t drive or even walk. I’m afraid next time she will crack her head open!

Yesterday Janet stayed with Dad the whole day. She spent the night before there with him and I got to stay home the whole day. (Well, that’s not true. I had to give a 90 minute lecture, but I didn’t have to go back and forth to the hospital.) I was nervous about not going because Dad was supposed to be released to rehab. I wanted to be there for the transition but I also knew Janet could handle it. I also have a son on crutches who doesn’t think they are nearly as much fun as he thought they were going to be. I also woke up with a massive cold so my head felt like a balloon.

Unfortunately, Dad never made it to rehab. His blood levels dropped again. Has to stay for another procedure, and hopefully this time they will be able to stop the bleeding for good. Poor guy. So, I’m off to the hospital as soon as I post this blog. Any day where I only have one hospital to go to is a good one, lol. I heard “when it rains, it pours” so many times this week, I knew what the blog title was going to be.

To end on a positive note, if you follow my blog you know I am a tough customer when it comes to medical care. There have been some moments where I wanted to hit my head on the wall, but the vast majority of time, I have to say I was terribly impressed by both hospitals this weekend. I kept thinking about how exhausted I was, but if I had to be in fight mood because my peeps weren’t getting good care, well that would have just pushed me right over the edge of the cliff. I am grateful and also hopeful that there are some shifts happening in the medical field that are positive!


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Genetic Markers

Last Saturday I was part of a medical conference that was wildly successful. The focus was to start the conversation with doctors, nurses, medical staff, and social workers about starting the conversation with patients/clients regarding end of life planning. The resounding message by speaker after speaker is that our current model is sorely lacking and in particular NY is behind the rest of the country. Right now, the conversation doesn’t occur until you are already in a major crisis or actively dying. This is much, much too late.

Truthfully, the conversation belongs anywhere that people gather. It should start in the home. But the first step is to get medical professionals to be comfortable with the concept. And it is my very strong opinion that the main reason this isn’t already happening is that they aren’t comfortable with dying themselves. How can they help someone else navigate those waters? If docs get it though, they will start to get their patients to talk about it at home. Eventually.

Anyhow, I was part of a six person panel that spoke for about 10 minutes (each) and then fielded questions from the 180-person audience. The conference ended with five skits that showed most of the concepts we were trying to teach. Sometimes the docs in the skits did great, other times they missed the mark. The intent was to generate conversation with the audience and it seemed to do a great job. I was in the skits, but more importantly for me, I wrote them. This was a huge stretch for me professionally. My books and blogs are always about personal things that actually happened. I have never written before by creating scenarios/characters so I was terrified of the outcome. However, it seemed to be go over extremely well. Yay!

On one of the breaks, someone from Roswell (the cancer hospital here in Buffalo) approached me. Bottom line is that apparently they have recently discovered a genetic marker for gallbladder cancer. I was extremely busy preparing for the next section of the conference, but I tried to process the implications of what she was saying. I told her that was incredibly important because the hallmark of gallbladder cancer is there are no symptoms until stage IV when it is already too late to hope to treat it effectively. Of course she knew this. She said she hesitated to approach me, but knew from my lecture that I had kids. Could mean life or death for them.

Could mean life or death for them. That is really the bottom line. I have thought of this repeatedly since the weekend. I didn’t have anything to write the information down at the time, but she told me to google it. I attempted to, but the only articles I could find said there are no genetic markers. I have started looking for the proverbial needle in the haystack in my efforts to find this woman at Roswell. So far no luck but this is worth being my relentless self to find her.

So many, many questions. What if one of Tim’s kids have the marker? What would they do? Remove the gallbladder? Or just run tests every year? Does it ever skip a generation? If the kids don’t have it, should their kids be tested anyway? And would this be important information for Tim’s brothers too? Is there a particular age to utilize this information? I get a physical reaction whenever I start thinking about it. It’s a cross between literal illness from being reminded of the nightmare Tim went through and the utter terror of my kids or grandkids going through it someday, and excitement and anticipation at the possibility of being able to stop it. Thank God I wrote those books and started to lecture or I wouldn’t even know about this information. I think when they have a breakthrough, they should be required to seek out all former patients’ families and make them aware. That’s a pipe dream.

Wish me luck on this latest endeavor. I need to find this person and I need lots more information. And then I need to approach my kids. I talked to Colin and Frankie the minute I got home from the conference. Colin (age 32) just looked at me like I was insane. Frankie (age 14) told me he will never get cancer because he is immortal and will live forever. Later I thought of course this would be frightening for them to even think about, no matter how much they try to be cool on their exteriors.

Yes, wish me luck and say some prayers too!