End-of-Life Education

Helping a Senior Loved One Navigate Financial Challenges While Grieving

(Welcome our guest writer, Camille Johnson from the website Bereaver.com. Thank you Camille for this wonderful article!)

Whether or not it is expected, losing a spouse often leaves seniors feeling helpless and overwhelmingly sad as they encounter life without their dearest companion. And as they face grief and unfamiliarity, they also must make difficult financial decisions. Considering the emotions involved, many seniors cannot make these decisions.

If you want to help an older adult maintain sound finances while grieving the loss of their spouse, there are many ways to do so. Below, we discuss a few practical ideas.

Sit Down With Their Budget

The first step in helping a senior through financial challenges is to assess their budget. They will likely have many hurdles to overcome in the coming months, and they need to know where they stand.

This is when you will look at all the potential costs, earnings, and changes that come with the death of their spouse, such as funeral expenses, life insurance, social security benefits, etc. Figure out how much they need to live off of, factor in all their current debts and costs, and write out a simple budget that will direct their spending.

Go Over Funeral Planning      

If your loved one is in charge of funeral arrangements, they must consider many financial factors. For instance, they will need to choose whether to bury or cremate the body and where to hold the service. Many grieving people lean toward the most straightforward options available, which means your loved one will need your assistance when making decisions.

Research various funeral homes to compare prices and services, and offer to help with details your loved one is not prepared to consider.

Talk About Sales

Many surviving seniors opt to sell their homes. Not only can this help for emotional reasons, but it can also free up cash to help cover the various expenses they face.

If your loved one needs to improve their financial situation, consider helping them put their home on the market. Help them go through the costs, determine how much they could make from a home sale, and decide whether or not it is worth going through the process. If they choose to sell their home, be sure to find an experienced real estate agent to help walk them through the journey.

If they also have a business, assist them with the decision and process of closing or selling it. This may be relatively straightforward if it simply involves the sale of stock. Alternatively, it could be more legally complex if the business is transferred as an LLC.

These situations can often be stressful, and some helpful advice on good decision making may be in order. It’s most important to take a breath and pause before making a major decision. Your loved one may need time to consider all the factors and priorities necessary, but going through these decisions before they pass will avoid a potentially difficult probate sale.

Collect Life Insurance       

Though life insurance beneficiaries are not required to make claims immediately, your loved one may need to access money quickly to cover the bills. If that is the case, make sure your loved one obtains their insurance policy. And help them file a claim with the provider.

You will need to get a claim form and a copy of the death certificate, as well as the policy document. Gathering all the necessary information and filing a claim can be overwhelming, so help your loved one organize and prepare the documents.

Your loved one may also have survivor benefits available to help them financially. Research social security benefit rules with your loved one to determine the best time to start receiving benefits. They may only get around 70% of their spouse’s benefits if they apply at 60 years old instead of waiting until they are 67. But if they start receiving the benefits earlier, they will be collecting money for a more extended period.

Work With Professionals

Finally, remember that you do not have to be the only one to help your loved one. If you try to go at it alone, you risk becoming overwhelmed yourself, which isn’t going to help you or your loved one. Find professionals who can help you through each step. Along with finding an experienced realtor, work with a financial advisor to help with your loved one’s financial planning and budgeting.

Another service to consider for your loved one is Wind and Wing. An experienced doula can help your loved one move through the process of loss after another’s passing.

No senior should have to deal with financial decisions on their own while grieving the loss of their spouse. Consider the tips above for helping your loved one navigate the various economic challenges ahead, and hire any professionals who can help throughout the journey. Remember to practice extra compassion with your loved one, and foster your health and well-being through it all.

End-of-Life Education

Hospice vs Palliative Care

When you or someone you care about is faced with a serious illness, there are a lot of unfamiliar and confusing terms to acquaint yourself with. Sometimes there are subtle nuances between terms that should be explored because knowing the difference could impact one’s quality of life. Hospice and palliative care are two distinct entities that are commonly, and incorrectly, used synonymously. This has led to people not getting the care they need.  

Here are the clinical definitions of each:

Palliative: “Palliative care is specialized medical care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness. Palliative care is meant to enhance a person’s current care by focusing on quality of life for them and their family.” – www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care

Hospice: “Hospice provides comprehensive comfort care as well as support for the family, but, in hospice, attempts to cure the person’s illness are stopped. Hospice is provided for a person with a terminal illness whose doctor believes he or she has six months or less to live if the illness runs its natural course.” – www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care

I know, these definitions may still be rather muddy. This is how I look at both of them and hopefully this will help to add some clarity to all of the confusion. Palliative care comes from the word “palliate” which means to ease. Palliative care is all about easing the symptoms of illness, plain and simple. A patient’s age, prognosis or how long they have left to live has no bearing on whether or not they can receive palliative care. This means that if a person falls ill and they need further assistance with symptom control than what they are receiving from their regular health care provider, palliative care might be a wise course of action. Patients can still pursue all of their life saving treatments yet still take advantage of palliative care. It’s just there to help “ease” symptoms, whatever they may be. And more often than not, it’s covered by insurance, so people just need to ask for it. Why people often don’t pursue palliative care is because of the misguided notion that you have to be elderly to qualify or that it’s the same as hospice. And the first thing that people think of when they think of hospice is giving up. Neither hospice nor palliative care should ever be considered “giving up” on life though. 

Instead of focusing on treatments to prolong life, like palliative care, hospice is about focusing on the quality of time one has left. A person is eligible for hospice when they have six months or less to live. Contrary to some beliefs, hospice does not hasten a person’s death through the use of pain medication. Let me be very clear, disease progression is what causes the patient’s decline, all hospice does is manage the symptoms of disease with the hopes of the most comfortable death possible. And just because a person is on hospice does not mean that they can’t improve and go off of hospice care. To the contrary, I’ve known several people, my own father included, who went off hospice because their health improved. So let it be known, hospice is not a death sentence. It’s sad to think of how many people are deprived of all of hospice’s wonderful comfort care services until their last few days of life. 

So if you ever find yourself or a loved one needing medical support, regardless of age or prognosis, there are options that you may not have realized were available to you. Just ask your health care team for more information.

Jaime and Kira
Wind & Wing Updates

Meet Kira

Meet Wind & Wing’s newest team member!

It’s my absolute pleasure to introduce my End-of-Life Doula Assistant, Kira Hyde. Since Kira first discovered Caitlin Doughty’s book Smoke Gets in Your Eyes and Other Lessons from the Crematory back in 2016, her life has never been the same. From that time, she’s been a death positive advocate and hopes to help people accept death as a natural part of life instead of treating it like a taboo subject.

In addition to the death positive movement, Kira’s other major passion is the right to accessible information. This led her to pursue a Master’s of Library and Information Science from Dominican University in Illinois. She’s almost completed her studies but is also considering continuing on to an end–of-life doula training program. Life and people are stories to her and she has a thirst for hearing and learning more. That interest and curiosity is what will make her an asset either in a library setting or companioning someone who is looking for care and connection at the end of their lives.

Kira is excited to join this team as an assistant helping with social media, networking and organizing events. Look for more from her! She’s only just begun and she’s already made such a huge difference in my life. 

Journey Through Life & Death

Happy Business Updates

Bonjour! I’ve got happy doula business news. In this video I share what I’ve been up to as far as Wind & Wing is concerned. It’s been quite a year for the business and I’m looking forward to a prosperous future. I’ve been able to secure funding to grow and I’m extremely nervous and excited! A part of the process has been revamping this website, which I’m so proud of. Hopefully, this is the place where you can find end-of-life resources, services (both in-person and online) and a shop full of cremation vessels, memorial jewelry, home funeral kits and Rest of Your Life Planners©. Yes, ten years in the making, I finally finished making the end-of-life planning book that I’ve always dreamed of. Currently, this planner is only a New York State version but keep checking back because I will slowly be adding in versions for all states. There’s still lots to do and thanks for being here for it all.

If you don’t have the chance to watch the video, just to summarize, I’ve been busy writing a business plan and working on a microenterprise grant for Wind & Wing and I’m happy to report that my hard work paid off! I now have a grant to invest in marketing the business and hopefully once things pick-up, I will be able to have the funds to hire a part-time doula. Yes!

I met many people along the way that were so helpful. I can’t stress the importance of getting help when it comes to starting a business. There are just way too many things that you need expertise in to do it easily and correctly.  If you’re in New York State, here’s the link to the Small Business Development Center. If you’ve been dreaming of starting a small business, I can’t stress how important it is to get a hold of them or a similar program in your neck of the woods. They have so many resources to get you on your feet and going. Plus, since Covid, they’ve expanded their offerings.

 

Journey Through Life & Death

Doulapalooza & Agent for Disposition of Remains

Hello friends! In this installment of my end-of-life video series, I briefly touch on the takeaways from NEDA’s Doulapalooza back in October (yes, I am super late to the game here) and the Appointment of Agent to Control Disposition of Remains form. Additionally, I address wills and trusts and point you to this fantastic resource which will help you create an online last will and testament. This video will conclude our review of the essential advance directive forms. Wahooo! We got through the rather boring–but extremely important–paperwork part. Now we can get a little more creative with our content. If you want a New York State version of all of the advance directives, plus A LOT more good end-of-life planning stuff, get your hands on my Rest of Life Planner.  As time goes by, I will be adding planners for each state to the online shop so keep checking back. 

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 (or get yourself a Rest of Your Life Planner). 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 Cake.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. 

Journey Through Life & Death

Power of Attorney

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.

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.

  • 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 the 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.

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.

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.”

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.