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death doula

Journey Through Life & Death: HIPAA & Your Famous Last Words

This is the part where we mix the creative with the mundane. Let’s address the mundane first: HIPAA. You know it. You hate it. But what the heck is it anyways? Well, to put it in the most basic of fashions, HIPPA is there to protect your privacy. You don’t want just anyone having access to your deep, dark medical secrets, do you? Of course not. So, you need to tell your medical health care providers just who can have access to your medical records. Here is the official New York State release of information. If you live in a different state, of course you will be able to find something similar by doing a quick internet search. Here is a brief article reviewing the importance of filling out the form. Okay, now on to the fun stuff…

Think about the words that inspire you. Did you write them? Are they from your favorite song, poem, movie, book…? Write them down (or type them if that works better for you). Put them in your death binder. Your death binder is not supposed to be some dark place where all of your end-of-life forms go to die. The death binder is a place to celebrate your life. Celebrate all the things that make you…you. It’s your legacy. So start committing to capturing some of it for family and friends to enjoy when you’re gone. If some of those words are destined to become a part of your memorial service or funeral, make sure to indicate that in your living will. Remember the one I had you fill out from http://www.joincake.com? There is a place for such information there.

Okay, until next time… enjoy pondering and gathering the words that helped shape the person you are today. Put some thought into and enjoy the process.

Additionally, I filmed a video that with help anyone who is trying to figure out what to do with the debt incurred by a loved one. Plus, my call to action when it comes to rehabilitation/skilled nursing facilities. If you have a rehab story that you’d like to get out into the world, please contact me. I’d love to interview you for my channel. Perhaps someday, I can get it seen by the right people who are in the position to push for positive changes.

Here is a synopsis of me and my father’s skilled nursing nightmare:

  • He is transferred to Gateway Rehab and Healthcare in Lenoir, NC from the hospital with absolutely no notice. He was swept away and the family was not notified of when and where he went. He was just gone from his room one day.
  • At Gateway, he is quarantined for 14 days with no visitors and if you don’t have a working cell phone, you’re not able to contact anyone because there is no phone in the room. This was extremely isolating for my father.
  • For the first time in his life, he develops anxiety and cannot sleep. All he asks is for them to raise his head above the rest of his body but he is ignore and instead medicated.
  • Everyday he is left so lay in his own waste for hours. If he is placed on the toilet, he is left there for long periods of time.
  • His call button was not even plugged in for the entire 21 days and the staff was aware that it wasn’t plugged in.
  • He is not bathed. He asked to take a shower but was told that the showers are down the hall but that he is not allowed to leave the room because he might spread Covid, despite being tested for it everyday.
  • They tried to extend his stay by saying that the facility was going to be completely locked down to people going in or out because there was a Covid contact somewhere in the building. I called Medicare to ask what happens if the facility extends his stay past the covered 21 days and they told me that my father is responsible for paying a $183 co-pay for each extra day that he stays. They also reminded me that they cannot keep anyone. Skilled nursing is an option. I promptly call my father back to tell him that they are not keeping him any longer than is covered 21 days.
  • My phone calls and emails were completely ignored. The only time someone contacted me with any information was 3 days before he was set to leave. That was a nurse and a social worker telling me that my dad is in terrible shape and needs to stay with them. His reported condition is that he cannot use a walker and can only use a wheelchair because his body is so broken, he can’t toilet himself, he is on about ten medications and needs oxygen continuously. The social worker would tell me something about his condition (like that he had a urinary catheter) and then the nurse would backpedal and say that wasn’t totally true. I told them that he was leaving regardless of their recommendations. They said they were willing to only give him 10 days of medications and after that he was on his own. They were not prepared to give him a wheelchair so that it would take about a week to get one sent to his temporary home. For the entire conversation they were going out of their way to let me know what a huge mistake I was making in not just transferring him to their nursing home.
  • Ironically, after my phone call with the nurse and social worker, my father saw a physical therapist for the first time in his 21 day stay.
  • While he was at Gateway, he developed bedsores from not being moved. This is a person who just was hospitalized with a systemic blood infection.
  • When he left Gateway he continued to make very slow progress at my step sister’s for two weeks until we moved him to a private care home in NY. The first night that he was there, Judy (the owner of the home), showed him how to use a walker, had him putting away his things, using the toilet on his own and only using his oxygen when he was feeling winded. That was all within the first night of being there! All he needed was someone to show him how to walk with a walker and encouraged him to try. And all Gateway did was break him down and told him he would only get worse and he believed it.
  • It’s now been less than 4 months since leaving Gateway and he is walking without any assistance, quit smoking, no longer needs oxygen, the only meds he takes is an inhaler, is going to the bathroom and showering on his own and is happier than he’s been in a long time.
death doula

Journey Through Life & Death: POA

Okay, let me start with the caveat that I know next to nothing about the legal system. With that being said, take all of this with a hefty grain of salt. However, I feel like I can be of some assistance since I’ve recently had to navigate this process while trying to plan for my father’s future care. Trust me, you can’t get very far applying for long-term Medicaid or assisted living if you don’t have power of attorney.

First, you may ask “Isn’t being a health care proxy also having power of attorney?” The answer is yes and no. If your loved one is incapacitated and you are the health care proxy, you have control over medical decisions. That gives you medical power of attorney. BUT, you have no control over financial decisions. I’ve linked an article here that goes over the important differences between the two. One of the most common problems the article cites is parents wanting to equally divide up the responsibilities amongst children so they designate one as the health care proxy and the other as the financial power of attorney. This leads to one child choosing a specific senior living facility for their parent(s) and the other child having to release the funds to pay for it. You can see how this can lead to conflict. So if you’re a parent, don’t opt for this strategy and instead designate one person to be both.

Of course the form is different in all states so you will once again have to do some Googling but here is New York’s short form. This is one form not to mess around with so make sure you consult a lawyer if you have any questions. If you are someone’s POA, make sure you don’t sign any paperwork that makes you liable for paying off your loved one’s debt. Places will trick you so read the fine print. This form literally gives someone else to access to your finances. The good news is that as long as you’re of sound mind, you can revoke the POA if need be. You can also add different provisions in the optional section labeled “Modifications.” For example, according to Legal Zoom, you can make it a springing POA by inserting: “This POWER OF ATTORNEY shall become effective upon my subsequent incapacity,” otherwise the document is effective immediately. You can also add the manner in which your incapacity would be determined, such as by stating it requires certification of incapacity by two physicians who have examined you.

So I hope you find this helpful. The POA is definitely something to get squared away before anything bad happens.

death doula

Journey Through Life & Death: MOLST

I’ve been trying to figure out when is a good time to mention my recent family emergency and this part in the process seems the most apropos. A little more than a month ago, my father ended up in the ICU for respiratory issues and his condition deteriorated to the point that he was in a medically induced coma, put on a ventilator and tube fed. The doctors told us that after two weeks on a ventilator, we would have to make a decision: to take him off the ventilator and hope that he can breathe on his own, if he can’t than Hospice can make him comfortable until he passes OR do a tracheostomy which would mean in his case that he would be on a ventilator for the rest of his life. Two weeks is their ventilator maximum because the tube then begins to erode the lining of the trachea causing permanent damage.

Now, being a death doula, I knew to ask about if he had appointed a health care proxy or made any indication of his wishes before he had crashed, but he unfortunately hadn’t. Since there was no health care proxy, these decisions fell to his next of kin which was my brother and I. We discussed what we thought dad would want and we easily decided that there was no way he would want to live on a ventilator. So this brought us to how we went about conveying that to the medical staff at the hospital. This is when the MOLST (Medical Orders for Life Sustaining Treatment) form saved my dad. I had made a copy of the MOLST even before I got to the hospital so I knew what questions we would be asked to consider: Does dad want cardio pulmonary resuscitation?, Does he want to be on a ventilator?, Does he want to be intubated?, Does he want a feeding tube? and For how long does he want these interventions?, etc… Since they had already intubated him, put him on a ventilator and inserted a feeding tube, those actions were already in play by the time my brother and I stepped in. What loomed over us was the tracheostomy because at the time we weren’t sure if we were condemning dad to death without one. We went with our gut and wrote on the MOLST that he was not to have a tracheostomy. The next day, I handed it to the doctor and we briefly reviewed the form together. Over the next few days, medical personnel knew that the tracheostomy was no longer on the table so their focus became weaning him off the oxygen. I’m happy to report that two days before the tracheostomy would have to be done, he successfully was taken off the ventilator and is now feisty as ever. Once he could speak, the first thing he did was thank me for my decision. I’m grateful that MOLST and health care proxy forms exist. If they didn’t, he probably would remain on a ventilator until he faded away and our family would not get to enjoy anymore time with him.

The MOLST (or POLST) form is something that is usually given to you by your doctor when you have a life-limiting illness, are placed into a long-term care facility or something that you may ask for if you are certain that you do or do not want particular life-sustaining measures (or even if you want them but only for a limited time, you can convey that on the form). When used in a hospital setting, it’s on a special colored sheet of paper so they know that it’s the official document. For non-hospital settings it’s used to convey to emergency personnel what your wishes are (for example, if you want CPR or not). In order for the form to be honored by EMS, home care agencies and hospices, the form must be signed by a doctor. What I can’t recommend enough though is filling out a copy before something extreme happens, even if you don’t have a life limiting illness and don’t want to get a doctor’s signature. If you’ve filled out your living will than you will find the questions repetitive but in this case redundancy can’t hurt. Having it there for guidance would be helpful. Put it in your magnetic fridge folder and also give a copy to your health care proxy. If we had at least a copy of a filled out MOLST from my dad, than figuring out what to do would have been a no-brainer for me and my brother.

Things to know:

  • If someone doesn’t have a designated health care proxy then the decision-making falls to the surrogate or next of kin which is the spouse (if not legally separated from the patient) or domestic partner, a son or daughter 18 years of age or older, a parent, a brother or sister 18 years of age or older or a close friend, in that order.
  • If you’re wondering about the DNR (Do Not Resuscitate) order, only a doctor can sign that form and it only covers CPR, not the rest of the interventions on the MOLST.
  • Make sure that when you or your loved ones transfers from one place to then next, that the MOLST/DNR is updated and still applies. For example, if a loved one is in the hospital and has a filled out MOLST/DNR but then they are sent home, that hospital document may not apply. A non-hospital version may have to be filled out.

Each state has their own version so I’d advise you to just Google “MOLST” or “POLST” and your state name. Here is New York’s version.

death doula

Journey Through Life & Death: The Living Will

Hello friends! It’s been a hot minute. I had a family emergency that has been requiring a lot of time and focus lately so my projects had to be set aside for a little while. The unfortunate irony is that my family emergency pretty much had everything to do with this series. The fortunate part is that my family member is doing much better, which makes me so happy but he did give us quite a scare.

So let’s review…. First we gathered our supplies. Second, we filled out our advance directive which consisted of the heath care proxy/durable medical power of attorney form, the living will, and perhaps organ donation information. Now we’re on to our third step which is a more robust version of the living will. As you probably noticed, the living will in the advance directive was rather….basic. It doesn’t really cover much. Remember, the idea of this is to make it so your loved ones have clear, concise directions, instead of wringing their hands and pulling their hair out. Ambiguity is not a nice parting gift.

The first thing that I would suggest is ordering a copy of the Five Wishes (https://fivewishes.org). It’s a legally binding living will, meets HIPAA requirements, is recognized in most states and most states don’t require it to be notarized. Moreover, it covers some emotional and spiritual aspects of dying that the advance directive fails to. Individual copies are $5.00 and once you’re done filling it out you can make copies for your medical team, loved ones, your proxy and your refrigerator folder.

The next thing that I would strongly suggest is going to Cake (https://www.joincake.com), sign up, and create an end of life plan with them. It’s totally free! What’s great about Cake is they ask you in-depth questions that a proxy and loved ones would need to know: from what music you’d like at your funeral to who should care for your pets, etc… This is the kind of detail that I like to see. Plus, once you’re done, you can email your proxy and loved ones a link to your answers on their site. Remember to print out copies as well because the last thing anyone is going to remember is that there is a site called “Cake” that has your wishes on it that you may have sent them years ago. That’s why I like to do a combo of Five Wishes and Cake.

Okay, you have your homework. Now get to it. Remember, if you have any questions, feel free to contact me.

death doula

Journey Through Life & Death: Advance Directives

An advance directive is a written statement of a person’s wishes regarding medical treatment, often including a living will, made to ensure those wishes are carried out should the person be unable to communicate them to a doctor.”

— The Oxford Dictionary

I think what intimidates people the most about end of life planning (besides the whole death aspect) is all of the confusing paperwork and language. As your doula through this death journey, it’s my job to make this easier for you. There are many types of advance directives: the health care proxy/durable power of attorney for health care, the living will, Physician Orders for Life-Sustaining Treatment (POLST), do not resuscitate (DNR) orders and organ and tissue donation forms are all included in this umbrella term. In this post we will cover the health care proxy and the living will. The American Bar Association goes over the difference between these two in the perfect amount of detail.

Basically, the living will component of the Advance Directive covers how you want to be treated in certain medical situations. The health care proxy form (or otherwise known as durable power of attorney for health care) allows you to designate a person to make medical decisions for you in the event you are unable to express your preferences about medical treatment. This could be because you are unconscious or because your mental state is such that you do not have the legal capacity to make your own decisions. Now, I’m sure you’re wondering who you should bless with this rather hefty responsibility and how you might want to strike up a conversation with them about your medical wishes. The Conversation Project has created an amazingly helpful document HERE that covers all of the considerations and legalities involved with your choice. Yes, this is a legal document. No, in most states, you do not have to get it notarized. Please read through this document before you continue on to filling out your own form.

Get your Advance Directive by state here. Once you’re done filling out your form, give a copy to your health care proxy and any other family/friends you deem necessary, give a copy to your health care providers at your next visit, give a copy to your local hospital at your next visit, keep a copy in your 3-ring binder (inside a sheet protector) and also keep a copy in your magnetic file holder that I want you to put on your refrigerator. Why the big fridge magnet, you ask? Well, if an emergency were to occur, all of your essential documents will easily be found by EMS and loved ones. This is especially important for those nearing the end of life who have specific Do Not Resuscitate wishes.

The Advance Directive is not set in stone. You can update it whenever you feel the need. Just shred the old copies and replace them with updated versions. If you’re healthy, I recommend reviewing your end of life care plans annually. However, you may want to do it more frequently if any big life changes occur or if your health status changes.

Do you need help starting a conversation with the person you’d like to be your proxy? Well, I’ve got you covered, here is a step-by-step guide.

Okay, next time we meet up we will cover a more robust version of the living will.


death doula

Journey Through Life & Death: Prep Yourself

Okay party people, let’s do this! So this year I’ve decided to get my act together when it comes to life, specifically the part of life that we all want to avoid…death. I’m hoping that if I get my self situated, my 72 year old mother will follow suit because currently her end of life plan consists of a handwritten letter attached to the fridge that basically just says to not have an estate sale where people comb through her used underwear looking for gems. I fear the day that something happens to her and I have no real guidance whatsoever on what to do. So I’m determined to not to inflict the same torture on my loved ones.

Initially, I had planned to begin this process at the beginning of the year but in order to reach the most people possible, I knew that I’d have to include a YouTube component. Yikes! The idea of uploading an awkward video for all the world to ridicule is daunting but I feel like this work is important enough to get over my ego and insecurities. So the time has come, better late than never I suppose.

This is what I consider to be a death journey and despite the bleak nature of the subject matter, it very much is about life as well. We will start with the basic forms needed that everyone, no matter your age, should have filled out just in case something unfortunate happens tomorrow. Once the most time sensitive documents are dispensed with, we will journey through the disposition of our bodies and then travel back through time from there. Why am I starting at the end, you ask? The last portion of this journey has a life coaching component that meets you where you are today and what a better way to gain some perspective and appreciation for the life you’re living now than to plan for its end.

Suggested Supplies

  • Access to a printer, printer ink & printer paper.
  • A pen.
  • Some way to save your digital files (ex. USB drive or Dropbox).
  • One folder.
  • One 3-ring binder.
  • One magnetic file holder like this one.
  • Sheet protectors like these.
  • Perhaps some art supplies if you like.
  • Maybe some personal photos that you love.
  • In the future you might want to get a small fire-proof safe for your documents.

See, most of this is all stuff you probably already have lying around your house so there is really no excuse for not following along with me (yes, I’m talking to you, MOTHER!). If you don’t have these supplies, don’t sweat it. As long as you have access to a printer, you’re golden.


Now let’s begin…


Health, Wellness & Enjoyment

Motivation Monday (A Day Late)

Happy 2021! Here are some virtual goodies that inspire me and perhaps they’ll do the same for you.


For those of you with new years resolutions to exercise more and/or lose weight, this podcast is for you. Here’s some good advice for those who are feeling a bit worn (like me), injured (like me) or are planning to use age as an excuse to quit (like me).


This woman is my workout idol. She’s a 70 year old powerhouse! And what an amazing transformation. If you want to be inspired, check out her website:

https://www.trainwithjoanofficial.com/


And it’s not too late to join in on 30 days of yoga. For free! This year marks my 5th year doing Yoga with Adriene and it’s a great way to start the new year off gently so you can build up to either more yoga or more vigorous exercise.


This last one is a video that will help you wrap up your feelings about 2020 and clarify your goals for the new year in a thorough and unique way. I can’t wait to try it.

Self Improvement Sunday

Self Improvement Sunday: Arbitrary Timelines

I took last week off of Self Improvement Sunday in order to enjoy a Self Care Sunday. Yes, that basically meant sleeping in and pampering myself with some beauty products from a gift bag that I had won, but it still counts. Plus, I really didn’t find any content that I found all that inspirational last week and I’m not about to half-ass Self Improvement Sunday by posting something lame. After scouring the interwebs, I found something that fit the bill. I especially liked the first speech by Jay Shetty. He touched on something that has always bothered me and continues to get me fired up. It’s the idea of having a timeline in life. You know, “By this age I must have accomplished ____ or I’m a failure” kind of crap. Or my favorite, “You’re too old to do that.” I’ve been hearing that a lot lately and frankly, I’m sick of it. Just because people have decided to use some very arbitrary and nonsensical yardstick to measure their lives does not mean you have to measure yourself with it too. Just pass them on by and get back to being awesome.


Self Improvement Sunday

Self Improvement Sunday: Hack Your Brain

This is a long one but I found it worth the watch. This definitely jumps off from the video I posted last week about how we need to act first and motivation follows, not the other way around. Also, stick around for his simple breathing exercises for relaxation. I’ve been using them and they’ve helped me calm the heck down.