Help for Healing

Bitter & Sweet, living daily with grief


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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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Janet

My sister Janet is eight years older than me. I have some memories of her as a kid, but mostly there was a big enough age difference that we didn’t steal each other’s clothes or boyfriends so there wasn’t a lot of conflict.

She is the middle child, but for years we also called her the Perfect Child. As adults, I found out that she always hated that so I stopped saying it. I also call her Dad’s favorite daughter and I haven’t stopped saying that. I joke around about it, but it doesn’t seriously bother me because she is truly one of the kindest women I’ve ever known in my life.

I was just talking with a client yesterday who has a family member with cancer news. I remembered when we starting testing Tim and suspected it might be cancer. Janet lived near Rochester so she was an hour-and-twenty-minute drive away. I was on the phone with her when she said, “No matter what happens Darcy, you won’t be alone. We will be there every step of the way.” And she was.

Twice during Tim’s five months of illness, she took an unpaid leave of absence to come and help. I never forgot that because there were other relatives/friends that lived closer and were more close to Tim than she was, but she was the one that didn’t bat an eye. She just took the financial hit and came.

One memory that particularly stands out was when the decision was made for Tim to go to Hospice to try to get his sleep regulated. I called her to tell her and she made all that distance and got here before the transport car came. She and I took Tim around the property in a wheelchair to give him a chance to look at everything, reminisce, and ultimately say goodbye.

She has been here again, this time for Dad. She arrived the day before New Year’s Eve from Tennessee. And she is still here. She leaves Saturday which means she was here a full three weeks. Dad required 24 hour supervision until this week so she literally spent the whole time with him in his assisted living apartment.  I can’t even begin to express what a massive relief that was to me.  I know Dad is going to miss her terribly, as will I.

I enjoy her company immensely, but I was in a catch-22. She was here to take care of Dad, which was my chance to get a break. I wanted to visit with her, but I needed some distance from the situation at the same time. Thank goodness she completely understood that.

Even though she lives in Tennessee now, she still had a job where she had to take an unpaid leave of absence to be here. To take a three-week cut in pay when you live paycheck to paycheck is an incredible sacrifice. She makes it without blinking an eye, without a question. If I asked her to stay even longer she would.

Her husband supports her being here, even though I’m sure he misses her. Her daughter supports her being here, even though Janet misses her little grandson so much I’m sure her heart aches. So thank you to all of her family who let us borrow her capable hands and her ever-giving heart.

And how do I thank Janet? I couldn’t possibly. But deep down, I know she knows. She loves me too, and came to support to me. Mostly though, she did it for the deep love she has for our dad. He’s not an expressive man, but I know he appreciates her as much as I do.

IMG_20180109_101722452_HDRThank you dear Janet. You truly are perfect!


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Put Your Money Where Your Mouth Is

I have been lecturing on death/dying/end of life planning for four years now. As my dad has been going through medical issues, I find myself on the other end of that conversation. I hear doctors and nurses say things almost verbatim to the things I have said myself many times over. But it has been a good wake-up lesson for me to have it be so personal again. It’s been a while since the information has been so relevant and in my face.

A few weeks ago when Dad was in the hospital, we had to make some decisions. I have been anticipating this moment for at least a year, maybe longer. Yet somehow, I felt shock, blind-sided, unprepared. It was strongly reminiscent of what I felt when Tim passed. I had been at his side for months, thinking I was ready for the moment when he would go. But when they announced his death, I felt my knees literally buckle underneath me. I was shocked. How was that possible? Yet it was the definite reality I lived.

Dad made a decision to go palliative a few weeks ago. It totally makes sense. It’s a rational, reasonable decision. He has Parkinson’s, a degenerative disease that only gets worse. There is no getting better. After seven hospitalizations in 14 months, there will be no more tests, procedures, labs, hospitals, etc.. The decision was made through a very teary-eyed conversation between myself, my sister, and the nurse practitioner. She did an excellent job, just like I would have done in that position. She told us that Dad had spared us making tough decisions but clearly making his wishes known in his MOLST form. It was end of life planning working exactly the way it was supposed to.

Then why the hell is it so hard?

Now don’t get me wrong. Dad does not appear to be in the active stages of dying. But he is ready to when the time comes and wants quality of life until then. He could be around for a long time, no one knows.

My sister and I took him to see his dermatologist yesterday. We updated her on what has been happening. When we were ready to leave, she cried. She apologized if she was upsetting us but I told her it always feels good to know other people love Dad too.  He has a great team of doctors that have taken years to gather together.

Again, my point is just this. While I talk about this “stuff” quite frequently, it is still hard to face when it isn’t just concepts we are talking about, but someone I love dearly. It renews my passion again to help people think about these concepts before they are in the middle of crisis. It’s hard enough to do with preparation! I’m starting the process of figuring out my next career move but I know it is going to have something to do with helping people on this journey.


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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


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There’s No Place Like Home

After what seemed like forever, Dad returned to his apartment last Saturday. Of course all the preparation was for naught because the promises made to me on Friday were only empty words. When I arrived to get him, the staff had no idea he was being discharged and the paperwork wasn’t even printed out. After several hiccups, he was finally in his own apartment.

It’s been a bit of a roller coaster since then. Three hours after going home, I came back to visit him and he was shaking like a leaf with a fever. After consulting with a nurse, he took some Tylenol and seemed back to himself. The next day, the visiting nurse came to see him. His blood pressure dropped from 120 down to 80 (top number) when he went from sitting to standing. I almost had a heart attack myself when she said she had called in to see if he should be sent to the hospital. Thank God the answer was no. We both would have freaked out.

The next morning we were able to meet his new doctor. I asked if we should increase his low blood pressure med. She suggested we keep an eye on it this week before adjusting anything. Later that day my boyfriend and I were going to walk the dog when I got a call from Dad. He wasn’t feeling good. We went right over and he said he was feeling dizzy. He tried to get up from his chair and almost fell. Thank goodness I caught him.  I had my boys come over right away to stay with him while I worked. Then we went back later. He was already sleeping by 8 pm but he seemed stable.

Tuesday came and the visiting nurse called and said his BP was low. She said she would let me know how it was on Thursday. That brings me to today. I went to see Dad in the morning and his PT person happened to come at the same time. I told him it was good timing because Dad was struggling to stand up from the chair. The visiting nurse and her assistant showed up too. This time Dad’s BP was 80. When he stood up, it dropped to 60/40.  Seven different medical people later managed to convince Dad to go to the emergency room. He did not want to go and I didn’t blame him. We both had a good cry. They suspect he is dehydrated.

As I write, I am in the emergency room with him. His blood pressure is up to 119 with no intervention, not even fluids. There has been no doctor to see him yet so I have no idea what is happening. The best case would be some IV fluids and back to his apartment.  My heart breaks for him. He’s a good man who has lived a good life. He has been ready for what is next for well over a year. Instead, this is his sixth hospital visit in the last 14 months.

The folks where he lives have been great. It is obvious that in the short time Dad has lived there, he has made an impression. He is so well liked and everyone is so concerned for him. They are responsive. I told them all that there is nothing to increase your appreciation more than to be forced to be somewhere else for a while. Here, people do their jobs well and still have common sense and compassion.

Say your prayers for us. Exhausted doesn’t cover it. And whatever I feel, I am quite sure Dad’s suffering is much worse. It’s physical, but it is also just so very emotional.

 

 

 

 

 


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Release

Phew!

After a very emotional and exhausting week, Dad is coming home tomorrow! I know it could have been a much longer time, but it felt like it was a really long road. It was weird leaving rehab today, knowing that on a Saturday morning none of them would be there when he is discharged. After a while, it feels like they are family. The physical and occupational therapy department were really great with him. They liked working with him too because he is just a nice guy and they appreciate him. It sort of reminded me of when I left Hospice after Tim died. These are people you start to see every single day, and suddenly you know you will probably never see them again.

Plus, there is the connection of feeling grateful to someone who has helped the person you love. When someone takes good care of your family, your child, whoever, there is a warmth toward them that doesn’t go away. There were obvious problems that I’ve blogged about previously, but there were many who did their jobs extremely well.

Dad is counting down the hours. They are letting him out at 9 am to accommodate my schedule because I have a hellish day tomorrow. I need to get him all packed up, transported home, unpacked, and have his meds ready for the week, all before 11 am. I appreciate them getting him out earlier for me.

My sister from Tennessee and I talked about the need for someone to keep an eye on things for the next week. The assisted living home where he resides think it’s a great idea as well. Truth be told, I think Dad does too. No more falls. He needs to be careful. Sometimes he still struggles with buttons or shoes. Someone should be nearby when he showers, just in case he loses his balance. We can hire staff to handle those things, but it’s frankly a ridiculous amount of additional money. I’m hoping we can handle it ourselves.

Monday he meets the doctor at his living complex. I’m hoping we like her. After that, I will have to buckle down and help him with all his Christmas preparations. We’ve done what we can already, but there will be plenty of last minute things. Too bad hardship doesn’t check in with your schedule. It always seem to happen at the most difficult time. But there is no one that can control that. And in a self-centered society that promotes individual happiness, the art of sacrifice is sometimes a lost virtue. I’ve been studying a psychologist who bucks that bologny and pushes for putting others ahead of yourself. It’s refreshing to read him.

Thanks to all of you for your prayers and support and visits and love and the countless hours listening to me vent. And yay to dad, who does his best to push on, even though he has been ready for a long time to be done with this side of heaven. Love you, Dad!


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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