Help for Healing

Bitter & Sweet, living daily with grief


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Here Again

For a supposed grief expert, I sure forget the basics sometimes. I find myself crying at odd times over odd things and get surprised by it. Then it finally occurred to me that it has only been two and a half weeks since Dad died. I preach to everyone that grief takes a long, long time. I’m not even close to being finished!

Continuing to cooperate with investigations about the fiasco that surrounded his death certainly keeps everything fresh. And it ignites the anger all over again too. I don’t mind spending the literal hours upon hours to do this. But am I going to feel that way if at the end of it all nothing happens?  What if nothing changes?

I’ve said it before and I will say it again. I keep learning new things and witnessing situations where I realize that the level of dysfunction in our medical system goes deeper and deeper. Will it ever get better? Is it even moving in the right direction? And will someone like me even able to make the tiniest difference?

I love the picture I posted last week. Dad looks genuinely happy to have his daughters with him. It is freaky weird to think that was only two months prior to losing him. He looks healthy and full of life.

The first thing that set me off was a form letter I received. I talk about this event ad nauseam every day. Seeing “we have been informed of the death of David Thiel” is pretty straight forward but it knocked me off my feet. I just started crying. Colin made me feel better. He saw it and said that it is indeed difficult to see it in print.

Thanks to the countless  number of you that have sent cards, donations, food, flowers, and just plain old check in calls. So many people knew him and think he was a stand-up guy, just like we do. There is a big empty hole in my gut that is going to be there for some time. Not sure what will start to heal it, but I know time is a factor.

An eerie number of my friends have lost a parent this year. If you are one of them, give yourself a moment to be gentle with your memories. If you know someone who is going through this, take a moment to reach out or say a prayer. It means more than you know.

Yep, that’s me and my daddy.  Darcy, Dad- camping


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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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Riding in a Car with Women

Along with the aches and pains of a job search, I have also been able to meet some great people. I had to attend a meeting today and car pooled with three other women. There was the drive there, the meeting, and the drive home. Let me just say, I haven’t laughed that hard in a while. The range of topics was staggering, from professional to personal and everything in between.

Talked about my dad and got some phone numbers to follow up on some things for possible better care. (That’s the advantage of hanging out with other aging care managers. They know the same peeps as I do but many, many more.)

Talked about the agency we are affiliated with and the frustrations with our medical system and the lack of interest for our aging population. It was great to hear other people be passionate about wanting to change things for the better. I’m proud of our agency for focusing on the aging.

We talked about the upcoming conference which is another year away. That’s good because pulling off a 3-day conference is a monumental task.

Talked about the naked bike ride in Buffalo. I was able to say I knew people who actually participated in it. (By the way, if my friends are reading this, I did not initiate the term “naked bike ride.” THEY called it that so don’t yell at me!)

Talked about one women’s ice pack on her bum. She got it from exercising. The back seat agreed that is one more great reason to avoid exercising whenever possible. It’s just too dangerous.  Bad for your health.

We talked about a surgeon that can reconstruct a woman’s virginity in the physical sense. Modern medicine! This comes in handy if you ever need to go to a country where a woman is required to be a virgin in order to be worthy of marriage.

We talked about breast-feeding and the miracle of birth in general. I pointed out that the whole concept of growing a human inside you is indeed a miracle, as well as quite creepy if you think about it too much.

Vibrators. That was a good one. Stories about a mom who discovered her teenage daughter had stolen hers to use it.

Stories about rectums that fall out. One of us was a nurse so she is the information guru on this one. I didn’t even know that was possible. You think that is weird? She had to put gloves on and put it back inside. Yikes.

Then there were the dating stories. I’m the only one not married at this point. I got out my list of names and numbers that have the jotted down notes to remind me of the lovely memories. We giggled over “chicken guy”, “toothless guy”, the guy that thought I was too fat, the guy that was younger than my children, etc., etc.. I decided I needed to give my boyfriend an extra hug next time I see him for saving me from all that nonsense.

I’m forgetting a bunch more topics, but let me just say I’m grateful for these new women in my life and I look forward to spending more time with them. You never know what the work day is going to bring you, that’s for sure. I did come home with a tummy ache from laughing so hard.  🙂

 


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When Sense Goes to Cents

This has got to be one of my most clever titles ever. It references what I consider to be one of the biggest problems our medical system has, the change from service to business. The almighty buck is the bottom line. Thus, common “sense” in practice has gone to worrying about “cents” instead.

If you follow Grey’s Anatomy, last week’s episode got me in a snit. It centered around a surgeon who knew she was having a heart attack but couldn’t get the doctors to listen to her because they were following their “protocol” and discounting the actual patient. Of course she ended up having the heart attack and almost dying because of it and I just sit there with my whole body tensed up knowing this isn’t just drama, it’s what really happens.

Last week I took Dad to his appointment with the cardiologist. The nurse had to check his pacemaker. She and I started chatting. Poor Dad. He must think to himself, “Oh God, here we go again.” I explained to her that Dad had switched to palliative care and that I found myself having to explain what to means to medical professionals, even those that work primarily with the elderly. Palliative does not necessarily mean a person is in the active stages of dying.

She told me that she was having the opposite problem in her family. I asked her to explain what she meant. She said while I was trying to get unnecessary services for Dad decreased, she finds herself fighting for services for her sister. Her story was appalling. I was so grateful she shared it with me because it gave me an entirely different perspective. It’s the same problem of having to fight a giant, broken system, but she was coming from the other side of the fence. It stretched my mind and further ignited my passion to try to change the ridiculous way things are run these days.

Her sister is relatively young, in her fifties. She has a degenerative, incurable disease and is now in as assisted living place where she gets medical care 24/7. At this point, her symptoms are similar to that of a quadriplegic as she has no use of any of her limbs. Like Dad, she has a swallowing issue. She was evaluated (like Dad has been a million times) and it was determined she requires thickened liquids. What often happens at this point, is that dehydration becomes an issue. It’s hard to keep drinking when you are on thickened liquids. Dad made me taste his thickened water at his last rehab stay. It was gross. Dad has decided he’d rather take the risk of choking than live the rest of his life drinking that stuff. I don’t blame him.

This woman is in a different place though. She is much younger than Dad and her brain is sharp. Her body just isn’t cooperating. Her sister noticed on one of her many visits that a little bit of regular water was helping immensely. She could communicate with others and would feel much better for a brief time. Dad’s nurse said that she even showed the medical team what a difference the water made and they agreed it made quite an impact.

Now is when the madness starts. Because she has been medically tagged “thickened liquids,” the staff is unable to give her even a sip of water. They can’t stop a family member from giving her some, but they can’t officially do so. Once she is labeled, there is no room for any exception, even when it is clearly medically indicated.

Upon inquiring further into this insanity, she was told they could indeed give her water if her status was changed to “comfort” care – i.e. palliative care. However, if they did that, she would no longer receive physical therapy or any other services she was currently given. Is it just me or is that ridiculous? It seems particularly cruel to do to a woman who can’t move her own arms to get herself a damn sip of water.

It’s about billing and regulations. I certainly understand the need for regulations, but why should you have to stop using common sense? Is there absolutely no room for even the tiniest piece of individual need? Not if you want insurance to pay for it.

My blood boils when I hear this stuff.  To Dad’s nurse- I don’t know if you are reading this, but if you are, thank you for sharing your story. I have no idea how it will take shape, but I am working to try to effect change for people like you and your sister. It’s an uphill battle with little success, but I’m not going to stop trying. Let’s try and bring compassion back to patient care.

Isn’t that just common sense?


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Memo to the President

I was asked to put my concerns about Dad’s experience at rehab to give to some higher up person. It took me a while with how busy life is, but here is the summary. Hopefully, it will make others aware of what to advocate for if they are in our medical system.

“Thank you for taking the time to look at my concerns. The reason I have taken the time to put this together, is that I have a true concern and passion for helping to improve the quality of care in our medical facilities. My dad went to your facility on Saturday, Nov 25 of this year and I am hoping my observations will spark some changes that will improve future patients’ experiences there.

Overall, most of the staff were pleasant, which is important for people to feel comfortable. However, it is even more important that they are effective in giving patients what is needed. Overall, there is a severe lack of information available- for patients, their families, and even the staff. Every day I walked in and had to start an investigation to find out who Dad’s nurse and aide were. Not only did he not know, but it would take several attempts with different staff to find out as well.

A very simple solution would be to have small dry erase boards in every room like most facilities have. Rehab doesn’t need the large ones with tons of information, but just a small one for nurse/aide information. Having one in the nurses’ station would be helpful as well. Staff literally just looked at me and said, “I’m not assigned to him. I don’t know who is or where to look to find out.”

Another solution, would be to train staff to develop a much better attitude for helping. In other words, staff should really be saying, “I don’t know the answer but I will find out for you.” And then they actually find out and return with the information. This seems like common sense, but it was completely lacking there with the exception of one or two nurses that would put the effort in. I would literally spend a significant amount of time walking around your halls trying to find things out.

Along those lines, there also was no atmosphere of team work. Nurses would not do “aide work” even if they were with the patient. Aides wouldn’t help if asked if dad wasn’t “their assignment.”(And then they were unable to tell me who he was assigned to!) I have been with Dad in several facilities and a sense of teamwork is definitely possible. Not surprisingly, those few who were helpful, were also the same individuals that would find out answers for you.

Someone mentioned at one point that the schedule was supposed to enhance continuity of care. I honestly don’t remember two days in a row where he had the same nurse or aide, much less several days in a row. Perhaps it happened for a day or two, but it definitely did not seem like there was continuity of care.

At one hospital, at shift change, every nurse comes in with the next nurse on shift and introduces the patient to the nurse. That is incredibly helpful and creates a warm and safe feeling of trust in the care being received.

I recognize that some of my frustrations are part of the bigger mountain of a problem with the medical “rules” in general that seem to lack the patient’s well-being as the priority. When medical systems became businesses, the focus shifted on making money, away from patient health. It is maddening when you are a caretaker/advocate for someone and come up against this. Over 98% of patients do not have an advocate to help them. I have to consistently be the squeaky wheel in order to get simple things in place.

For example, I discovered (rather than anyone on Dad’s medical team) that he did not require a sling. This was crucial information that would change the entire course of rehab. I let the unit nurse know and she said she would check the orders and call who was necessary and get back to me. It was MY follow up that took several phone calls back and forth with doctors and your facility that finally got “orders” changed but it took two and a half business days to make it happen. That might not sound like much, but when it is your quality of life and treatment that is at stake, that can feel like a lifetime. One day after the sling issue was resolved, I arrived to find Dad wearing the sling again. He said “the woman said he had to wear it.” Of course, it took me running around the hospital to find out what was going on. I finally got to the nurse on duty who said she didn’t know who did it but they must not have read the orders. She had absolutely no concern in finding out who it was so it could be addressed. And she missed the point completely that medically, this was actually something that would set Dad’s therapy back if he continued to wear it. No follow through, no concern. And what if I wasn’t there?

Dad also came in to your facility with stitches in his head. I started the very first day of admission to ask staff to make sure they were removed on the day they were supposed to be. It took a ridiculous amount of bugging and nagging to make it happen. What needed to happen was that a doctor literally spend several seconds looking at his head in order to give permission to the nurses to take them out. Taking them out was only a matter of minutes as well. At one point, the excuse was that the doctor that was in that day, was not the doctor that could be billed for it. That is ridiculous. Again, the facility’s profit is the concern, not the patient’s care. The billing is not the patient’s worry. If your staff can’t take five minutes (literally) to do something so simple for the good of the patient, there is a very serious problem.

One morning, I arrived at 9:10 am to find my dad on the toilet, still in a hospital gown. He was furious. After investigating, I found out that the aide who put him on the toilet went on break, leaving him there and not telling anyone. He had been waiting quite a while. When there is no teamwork, the other staff isn’t going to answer a call light if it’s not their assigned room. I have no idea why he wasn’t dressed either.

The same day, I found his room in bad condition. The bed was a mess. The tray table had red thickened liquid dried on which couldn’t even be removed with soap and water. The same stuff was on the floor, also dried on. Urine was in the urinal, which causes the room to smell. Most disturbing of all, was the used diaper in the middle of the floor. I showed the room to the nurse who said she reported it. It was absolutely inexcusable.

Another time, I came in to find Dad’s dirty clothes lying in the closet in several places. There was no dirty laundry bag. I was doing his laundry daily so I set about trying to find one of the bags. I can’t even tell you the frustration with the amount of time I spent literally walking around the entire building trying to find someone who knew where the bags were kept. And because no one is in the mind set of trying to find things out for you, I went from place to place. After I finally got the answer, I actually returned to every one of the staff I had asked and told them where the bags were kept so the next person that needed one wouldn’t go through that.

One day Dad had an appointment off site. I was told transportation could be provided. I set it up, and thankfully, I got an erroneous bill before the appointment for another transportation cost. When I called to find out about it, they agreed it was in error, but informed me that the upcoming ride would be $110!! I canceled the ride and took him myself. The person who set it up didn’t seem concerned that I didn’t know. I would think that when you are providing services that are extra expenses, it should be protocol that the patient is fully informed before signing up.

Dad was discharged on a Saturday morning. I knew how things had gone, so I started preparing for this on Thursday. For two days I talked with several staff members to make sure that everything was in place. As a single mom and Dad’s primary caretaker, I had limited time and I needed to get him at 9 am. I checked and double checked with charge nurses and social workers. I was reassured repeatedly there would be no “hiccups” with discharge. The paperwork was ready, notes were left for staff, and everyone was informed. I stressed over and over how important it was for discharge to go smoothly.

I arrived on Saturday to find that absolutely everyone had paid me lip service. No paperwork was printed. No notes were left. The weekend staff had no idea he was being discharged and nothing was ready. I was in tears. The level of stress that caused me was totally unnecessary. It was sad that I felt I had to check and triple check everything days in advance because of the lack of follow through, but to find that I wasted my precious time anyways was infuriating.

I would be happy to discuss any of this further. My heart is not in the place of complaining for the sake of complaining, but for the hope that things can be improved. Your staff could do a much better job and have more satisfaction personally and professionally by taking better care of the patients in their care.
Thank you for your time.”

Darcy Thiel