Helpful advice for the journey ahead…
What do you do when you find out another one of your friends has lost a parent? With social media being the center of our world these days, frequently we find out news such as this via Facebook, even if this was not the grieving family’s intentions.
I woke up early last week to post something about The Medical Day Planner on the Book of Face and saw that one of my dearest friends from high school had misquoted Shakespeare’s Marc Anthony- I come not to bury Caesar, but to praise him. I had a nice giggle knowing that my friend is far too intelligent to have made such a mistake, and that the misquote was definitely intentional. Then there was a quick status update that he would be in Chico soon. Completely oblivious to what was going on, I texted him to see if we were going to meet up when he was here. Then it dawned on me, who has he come to praise, not bury? SHIT! I began digging around his Facebook page to find condolences by the dozen. Double shit! I had just broken my own “no technology” (no text of FB for condolences) rule without even knowing it. I immediately dialed his phone number, anticipating being able to apologize for my very lame text and give him the condolences he needed. Instead, I turned into a balling blabbering idiot when I heard his voice on the voicemail. I was able to spit out that I was very sorry for his loss, that if he needed anything while he was in town (a room, clothes, food, a hug) that I would do whatever I could, and that I was sorry for crying into his voicemail.
When he got off the plane and received my voicemail, he called me straight away to tell me that it was okay that I was crying on his phone, and that he would see me soon. Ay yai yai!
The point of this blog was not to admit that I am a cry baby at times, even though that is fine. What I wanted to talk about was the rally of support my friend received from his friends and the community. And mention what an amazing job some of his friends (not me) did at putting together a fabulous celebration of life.
The celebration took place at a local “convention center” that was donated and the theme was Hawaiian shirt. For those of us who knew “Q”, the deceased, it was an all too fitting theme, as he loved to wear the most heinous Hawaiian shirts. Q was an avid actor in the local scene and had a smile a mile wide. The ladies who put the celebration together decided on creating a playbill instead of a program for the afternoon. The named the show “The Unconventional Q” and it was put on by “Occupy Everything” Production. (Again, another inside joke, as Q was at the forefront of the occupy movement here in Chico.) The inside of the playbill had all the actors of the show listed; Starring “Q,” Supporting actors “his children” (who I are remaining nameless), all the way through screenplay, director, visual effects…you get the idea. It was creative and just what Q would have wanted.
Death sucks, we all know that. Unexpected death is a double sucky when people aren’t prepared and haven’t asked the questions that needed to be asked. So what questions should be asked? I am happy to lay out a laundry list of tough questions, but I would like to reiterate that these questions do not require an illness or disorder to be brought up. Every able minded human being should have this conversation with the ones they love.
• Who would you like to make decisions for you if you are not capable of making decisions for yourself? (Durable Power of Attorney, Agent)
• What types of treatments do you (or do you not) want in the event that life sustaining treatment is necessary? (DNI, DNR)
• What are your wishes in your final days? Would you like to be at home, in a hospital or assisted living facility? Would you like hospice or palliative care?
• Would you like to be buried or cremated? Where would you like your remains to be placed?
• Would you like a funeral or celebration of life? I know plenty of people who have actually helped plan their own funeral or celebration- picked out music, theme, venue etc.
These conversations do not need to be morbid. They are a reality for all of us, so why not get it out on the table.
I was asked by an individual at SeniorHomes.com if I would be willing to share my caregiving story. Sure! isn’t that what I do every week?
As I sat down to write, the words were flowing freely from my fingertips…tick, click, tack, on the keyboard. Within no time at all, the short essay was complete, and all I needed was a listening ear to make sure it all sounded A-O-Kay. As I began to read my story to Ryan, the story I had lived for years and had just penned with no issue at all, the gremlin that lives in my gut began to squeeze my esophagus and I lost full control of my tear ducts. The flood gates opened and there was no stopping the raging river that was streaming from my eyes.
And you know what? It felt goooooooood! Whew! It’s been awhile since I let those babies out…
Hope you enjoy the story:
At the age of eighteen, when everyone I knew was off enjoying their first year of freedom in college, I found myself caring for my mother who had been diagnosed with breast cancer. Her prognosis was “so-so”, but she rallied through her treatment like a true champion. In the late summer of 2003, my mother received a clean bill of health!
Feeling as though I had “missed out” on the ceremonial “spreading of thy wings”, I decided I would take it a step further; I spread my wings and flew to Hawaii with a one way ticket, a backpack, and a small amount of savings. With no place to live, I set out on a new adventure; I was going to discover my true self…
What was going to be six months of explorations turned into almost two years of self-discovery; until the unthinkable happened. One August 14th of 2005, I received the phone call that would forever change my life. My dad called to tell me the pain mom had been experiencing in her back was actually breast cancer that had metastasized to her spine. She had approximately three months to live.
After falling to the floor and having a hysterical crying fit, I pulled myself together long enough to drive to my place of employment and quit my job. With puffy eyes and a quivering lip, I tried to explain to my boss (a totally amazing and caring man), that I appreciated every opportunity he had given me. He smiled an empathetic smile and told me he needed to no explanation. (Whew…step one…down.) Next, I drove with both hands glued to my steering wheel to my realtor’s office. The condo I had owned less than a year was going to need to be sold, because I was moving back to California. Tomorrow.
With arrangements to sell my home and ship my dog back to the mainland, I boarded the flight home. Holding back tears, I watched as Maui quickly disappeared into a sea of blue as the plain ascended through the clouds to our cruising altitude of thirty-thousand feet.
As soon as I arrived home it was business time. There were doctors to see, treatments to attend and medical bills to be paid. It was determined that I would live in the family home (uh…my stinky little brother’s room to be exact), and help Dad care for Mom. Do to the severity of her condition (C1 fracture, “moth eaten” spine and pelvis), Mom was going to need full-time care and supervision. Although she was on enough pain medication to tranquilize a horse, she had the mind of a bull, and still thought she was capable of doing everything she had in the past; i.e. drive!
The initial power struggle was devastating to our relationship. My mother was the quintessential “mother”; dinner was on the table every night at 6:30pm, the house was to be cleaned from top to bottom every Friday, and laundry was done on Mondays and Thursdays. Daily trips to the grocery store where usually necessary to put together the three course dinners, as well as weekly Costco runs. She was reluctant to relinquish her “power” to her own daughter.
Needless to say, I didn’t quite clean with the enthusiasm she had, I despised folding laundry and I lacked the ability to be a Three Star Michelin Chef, but I attempted to fill her void.
As with most caregivers, I accompanied my mom to all of her doctor’s appointments and treatments. We opted to include alternative treatments (naturopathic, homeopathic, acupuncture etc.) as well as western modalities into her treatment regime. One day she would be zapped by a zabillion dollar radiation machine; the next day she would be muscle tested by a nice hippy man who would give her homeopathic drops.
Our relationship eventually transitioned into one of trust and camaraderie. I was her number one cheerleader. Many individuals outside of our family-unit did not support her decision to work with alternative modalities, and thus, made Mom question her treatment decisions. After much contemplation, my mom opted to partake in a chemotherapy trial at UCSF in early 2008. (She had surpassed her three month “death date” by over two years!)
Every three weeks I would drive Mom the three and a half hours to San Francisco, where she would have her blood drawn, tests examined and medication manipulated. Once the lead oncologist gave her the thumbs up, we would drive the three and a half hour home; not without stopping at Mel’s Drive In for chocolate milkshakes and open-faced turkey sandwiches smothered in gravy first.
In the fall of 2008, it was becoming apparent that something was not right. I was convinced the cancer had spread to her brain; her short term memory was nonexistent and she was slurring her words. After several tests were performed, it was determined that I was the one losing my mind, not my mom.
After several instances of “foot-in-mouth” disease (mostly on my part), we decided a break would be best for the two of us. Dad had witnessed World War III break out between Mom and I, and in an effort to prevent World War IV, we took separate-but-equal vacations.
Unfortunately for me, my mother’s physical body returned from her vacation, but her mind was gone. The mysterious ailment that I had assumed was a brain tumor was actually a mild case of hypercalcemia. After contracting a urinary tract infection on her vacation, her body was no longer able to keep the hypercalcemia at bay. Thirteen days later she was gone.
Although there was never a final apology for our final mother-daughter spat, I was able to lay in bed next to her as she left this life. At one point, as I whispered “I love you, Mom”, she remembered who I was, moved her hand to my face and said “I love you too, Tor.”
My journey of caring for my mother is now over, but I can’t possibly leave well-enough alone. I choose to re-live all of my experiences through a blog, titled All Things Caregiver. It is with sincere intention that I share my experiences and offer up advice for individuals at any stage of the caregiving process. I am also the author of a soon-to-be released book, titled The Medical Day Planner. This book (slash “planner”) is an organizational guide to help caregivers track and document all vital information pertaining to the caregiving process. Both of these projects are just as much of a healing process for me as they are helpful tools for other caregivers.
I read the most fascinating essay the other day in the Health section of the New York Times; The Downside of Doctors Who Feel Your Pain. To be honest, the essay was short, sweet, and to the point; mostly touching on the subject of improved doctor-patient communication. Is it better to have a “nice” doc and do away with the stereotypical “know-it-all” doc?
The essay certainly sparked some serious conversation in my office. As a sports massage therapist I have a wide array of clientele. Most clients are avid athletes in one form or another; be it CrossFit-like training or triathletes. The other groups of clients are referred to me through physical therapists and the local pain clinic; mostly due to lymphedema or scar tissue around surgical scars (usually mastectomies).
The type of massage you receive in my office is far from relaxing, which leaves ample opportunity (one hour to be exact) for healthy and stimulating conversation. Unfortunately, because of the age demographic and the “outdoor” lifestyles my clients have chosen to live, many of them have (or have had) cancer in one form or another. After reading this article, I was curious what my clients thought, because I certainly had an opinion.
If you are reading this, chances are you, or someone you love, has received “bad news.” Bad news comes in all shapes and sizes, and can be communicated in several different ways. When you (or a loved one) received your bad news, where you prepared? Was your cognitive mind as sharp as a whistle? Did you catch and understand everything that was coming from your physician’s mouth?
It was just last week, before I read this article, when a similar conversation came up with a client. This client was a breast cancer survivor and had had a consultation with the same oncologist my Mom had seen at UCSF (three hours from where we both lived…small world). When we learned this about each other, our first response, almost in sync, was “Isn’t she amazing?”
This oncologist was amazing. We both agreed that not only was she always dressed to the nines (not that clothes make a good doctor), she was eloquent, informative, and comforting, without being warm and fuzzy. In fact, she was the farthest thing from warm and fuzzy, but you felt safe in her care. She knew what she was talking about, had a plan, and was able to present this plan in a manner in which it could be understood. Most importantly, she knew when not to say something.
I can look back now and see she gave me the information I needed to help my mother and family make the appropriate decisions. Had I been ready to hear all she was saying, I would have understood everything she was telling me. Now that I know how my story ended, I can see she told me what I needed to know, but I wasn’t ready to hear it. She didn’t beat around any bushes, she didn’t mislead anyone, she was simply empathetic to our feelings. She wasn’t grotesquely up front, and didn’t say things that may have upset my mom; she simply had tact.
Maybe that is what we are looking for… tactful doctors, not “nice” doctors.
The ability to not say something was the common critique among my clients today when I brought this essay to their attention. Each of them had a horror story about what a physician had told them over the phone; something they believe should have been a face-to-face conversation. Others were told about an “unlikely” but devastating “possible” outcome. Some don’t want to even think about these devastating possibilities; it only causes unnecessary stress. However, there are others who don’t mind being told something over the phone and want to know all of their possible outcomes.
One instance in particular that stands out in my mind as being one of those “I can’t believe you said that out loud” moments, occurred at the beginning of my mother’s reoccurrence. Because the cancer had metastasized to her bones, she was in significant pain. As I had previously discussed in Medication Education, she was on enough pain medication to tranquilize a horse. As the physicians continued to up her doses and change her to stronger and more potent medications, I remember asking, “How will her body respond when it comes time to wean her off of these medications? Will there be significant withdrawals?”
The answer: “She won’t live long enough to ever need to get off the medication.”
Ouch! My mom was sitting right there and did not need to hear such negativity. Hope is what breeds health; not unnecessary negativity. I would have been happy with “we will cross that bridge when we get there.”
So how do you breed the perfect doctor when you do not have a “standard” patient? Most successful science experiences have one variable. I can only imagine, but to test the “nice doctor” theory, the experiment could look something like the experiments below:
Take a control group of ten patients with the same ailment. (Please note: I am far from a scientist, just observant). Each patient will be given fifteen minutes with Dr. #1 to have their future treatment explained as well as have any questions answered.
Take a control group of one patient. This one patient will see Dr. #1, Dr. #2, Dr. #3 through Dr. #10. Each of these doctors will be well respected within their community and will spend fifteen minutes with this one patient, discussing future treatment options and answering any questions.
Although I have not conducted this experiment, I am willing to wager that in Experiment One, several of our patients will not like the way Dr.#1 conducts him/herself, although this doctor conducted him/herself the same with each patient. In Experiment Two, chances are our one patient will be able to rank our doctors on a scale from one to ten; one being the doctor this patient would prefer to see, ten being the least favorite doctor. If we were to repeat Experiment Two with several different patients, we would probably see different rankings from each patient.
Again, I am simply being a pain in the butt and making assumptions, but I truly believe you cannot “breed” a doctor that can please everyone. I do believe there are traits and characteristics that make some doctors better than others. However, I am only one person, and what I prefer may not be ideal for my neighbor. Take a look at the essay here and tell me what you think.
I would love to share a beautiful book with all of you, Your Legacy of Love: Realize the Gift In Goodbye by Gemini Adams. To be honest, I have had this masterpiece in my possession for quite some time, but have personally been at a loss on how to go about sharing it. Everything Gemini touches on struck a personal chord, particularly of loss. I could feel her pain and grief, as well as personally relate to the scenarios that have occurred in her life; bringing her to the question she asked hundreds of loss survivors:
“If one of your parents died, what would you prefer: to inherit their money, or a letter saying how much they loved you?”
The result: Over 90% yearned for a loving letter, not a financial inheritance.
The book begins with Gemini sharing her personal story and her journey; one many of us will be able to relate to. She is an incredible woman who has taken a seemingly catastrophic situation and turned it into something positive. She is open and honest about the pain and the grieving process, allowing those who have been there to confide in her, one page at a time. For those of you who have yet to experience “it” (being the D-word), this may be eye-opening. The hysterical sobbing, the quiet breakdowns in one’s own mind, the prescription and self-prescribed recreational drugs to get by and the “Move on Mantra” are all very real emotional and physical states one travels through while grieving.
Next she moves into “Lonely Landmarks”; special days, holidays or moments in time which hold a special spot in a grieving individual’s life. My first lonely landmark was my twenty-fifth birthday. Just two months after my mother passed, I was sitting on the most beautiful beach I had ever laid eyes on in Thailand…and I was completely miserable. I had waited my whole life to make it to twenty-five. I was going to be a college graduate, married, possibly on my way to having children, owning a home, a white picket fence, a dog in the yard, yada-yada-yada by twenty-five. (You get it). I had the dog in the yard, but that was it. I had nothing except an empty heart and a soul that felt robbed. I would have done anything to have my mom hug me that day and tell me how proud she was of who I had become.
What remains of the book are suggestions of how to leave a loving legacy of your own. Many of you may be reading now and thinking “I have not experienced the grief of which she speaks.” That is the absolute beauty of this book. It is written in a perspective to help everyone, at any stage of their life understand the value in leaving a positive legacy of their own. What if you passed away unexpectedly tomorrow? How would your family and friends feel? What information or “future surprises” would you hope to leave? A card for the wedding your brother has yet to have, a scrapbook to share with your young child when she/he graduates high school or a video left to your sister? The ideas suggested in this book leave those of us who didn’t think of it sooner yearning for such “future suprises.”
Thank you Gemini for your gracious suggestions and devoted nature to the grieving and healing process. Your Legacy of Love is a must read for any individual who is a brother/sister, mother/father, sibling, cousin, significant other or friend. Anyone with an open heart and willing to experiencing love will appreciate everything this book has to offer.
The truth of the matter is I was not completely honest with all the hang-ups I had while caring for my mom in the last blog post. The biggest issue I had with her still haunts me, I still get angry at times and I know I need to let it go. We faugh countless times about this issue and never was it resolved. As I look back, I realize who was I to judge?
My mom smoked cigarettes. Constantly. With all the risks involved with having a habit like that, she never hesitated to light up. There were times in her life she “tried” to quit. There were times she tried to hide her habit from us and there were times she didn’t particularly care what anyone thought and smoked openly.
We were involved in a chemo-prescription trial at UCSF in 2008. Every three weeks we would drive to UCSF (3 hours from home), have blood drawn and have the same questions asked to us as the last time we were there: How are you feeling, how does the roof of your mouth feel, do you have neuropathy in your legs, and do you still smoke? The answers to these questions were: my head feels loopy, the burns in mouth have not gone away, the neuropathy in my legs is present and yes, I still smoke. The nurse practitioner would look at my mom, look at me, and shake her head. I would say something along the lines of “see, mom…try harder.” The nurse practitioner and I would proceed to antagonize my mom about her addiction to nicotine and how it was not helping with her overall health.
One of the last visits we had to UCSF, the doctor leading the trial was present for the question asking and the antagonism that followed. She quickly jumped in to defend my mom. She looked straight at me and said “everyone has a vice, smoking happens to be hers…let it go.” My initial reaction was to say “oh yeah, except everyone isn’t dying of cancer at this very moment and continuing with a habit that possibly helps cause cancer.” I didn’t lash out at the doctor. I did however, think those thoughts in my head and it dawned on me; my mom was dying. Why not leave her alone about her habit and let her enjoy what was left of her life.
That was October 2008. She passed January 2009.
Now I have a confession to make. As I raise my right hand, I admit to you “my name is Tory Zellick and I am a sugarholic.” Not even a sugarholic, a York Peppermint Patty and Reese’s buttercup-aholic. I have been clean and sober now 36 days. The longest 36 days of my life. Will I relapse? Probably. Will I try to quit again once I relapse? Yes.
You may be saying to yourself, you cannot compare cigarettes to sugar. I believe you can. Sugar may not be plucking days of my life away as quickly as cigarettes, but it is certainly putting up a valiant effort. Sugar is terrible for your body, but I continue to ingest Reese’s knowing the risk. Like the doctor said, “everyone has their vice.”
I hope everyone can take a moment and think about the one hang-up you have in your relationship. This could be a caregiving relationship, the relationship you have with your career, husband, wife, boyfriend, girlfriend or siblings. Is there something that must be brought to the table, discussed and forgiven? Is there some hypocrisy involved? You may be upset about one issue, when in fact, you may be demonstrating similar tendencies, only in a different context. In Thailand they say “same same, but different.” Enjoy the healing and forgiving process.
Why is it that life requires a sudden tragedy to discuss death and final wishes? We are all aware that death is inevitable, so why do most people avoid the topic completely?
Is it the fear of what is after this life? The fear of upsetting others by bringing up the topic of death? Why isn’t it the fear of no one truly understanding what our wishes are for our body? Do you have certain beliefs about burial vs. cremation? Do you have a strong opinion about life sustaining treatment? Most people have an idea of what they do, and do not want done with their body should a catastrophe occur; do your loved ones?
So why is this important to discuss now? First and foremost, these matters must be discussed because tomorrow is not a guarantee. You may live to the ripe old age of ninety-six, or you (or a loved one) may pass unexpectedly due to a stroke, heart attack, car accident or other sudden catastrophe. Then what? What if your thirty-seven year old sister is in a car accident and is now on life support with little brain activity? What are her wishes? Do you know, or was this topic never brought up because she is only thrity-seven? These issues should not require a diagnosis of a terminal disease to be discussed.
There are several “advance directives” an individual can have in place documenting his or her final wishes. Advance directives, also known as a Living Will, include, but are not limited to appointing a Power of Attorney or Health Care Proxy, a Do Not Resuscitate (DNR), Do Not Intubate (DNI) along with other instructions.
What are the correct questions to discuss should you choose to have this discussion with your family and loved ones? Aging with Dignity, a national non-profit organization, has created a document called 5 Wishes, helping you express your final wishes. It helps break the “discussion” into 5 main sections; each of which should be discussed at length so your wishes are understood. The document its self meets all the legal requirements for an advanced directive in 42 states. You can choose to use this document as your living will, or use it as a guideline for discussion.
The first topic up for discussion should be the individual you name as your Health Care Proxy, Agent, or Power of Attorney. This person will be responsible for making decisions regarding your healthcare should you become incapacitated or unable to make these decisions. This individual should have a clear understanding of your wishes and be able to make the appropriate decisions at the appropriate times. Becoming too emotionally involved can be a very real issue when dealing with end of life care and treatments. Make sure the person you name as your Proxy will be able to set their personal emotions aside and make the correct decisions based on your wishes. Page 5 of the document also lists several scenarios in which your health care proxy may need to make decisions, including: choices about medical care, refusal of medical care, admission to assisted living facility, release of medical records, any legal action and the ability of the Proxy to sign for the individual who can no longer sign for his/her self. Discuss each of these situations at length so you and your proxy have a clear understanding of what you would and would not like to be done.
Discussion number two (when following 5 Wishes) addresses issues revolving around medical treatment. Again, I would like to stress that you do not need to use this as your living will, but possibly as a guideline for these tough conversations. If you choose to use this as your living will, make sure this document meets the legal regulations in your state. The medical treatment section lays out scenarios including when you would, or would not like pain medication, what your definition of “life-support” is, how you would like to be treated if you have permanent brain damage, are in a coma and not expected to recover, close to death or other conditions. Each of these subsections gives several answers to how you would like these situations handled. Take a look at each of these suggestions and decide which best represents your wishes. Feel free to amend any suggestion to exactly what you hope for yourself. Make sure your Proxy understands as well.
Discussion three could revolve around how comfortable you would like to be and how to accommodate your comfort. Wish 3 is short and concise in the document and offers several suggestions of what “comfort” may be for the ailing individual. The list consists of what you may consider basic needs like a warm shower/bath and clean sheets, to things like not wanting to be in pain, music played and religious readings. When discussing what comfort is to you, don’t be shy. For example, my mother was raised Catholic but did not raise her children Catholic, nor did she attend church. To be honest, we never discussed the religion. Yet, when she checked herself into the hospital she requested she receive a prayer when the nice people came around in the morning to offer prayers. It made her comfortable, so we supported her; plain and simple.
Wish 4 of the document discusses how the ailing individual (you?) wants others to treat them/you. Things that may seem simple like having people around to talk to (even when it may seem that you are not responsive), having your hand held or pictures of family members brought to your bedside. Possibly more difficult things to discuss like wanting someone at your bedside in the final moments of this life or letting your loved ones know you wish to be treated with happiness, not sadness. Take a look at the suggestions offered, use them as a guideline and add anything that seems relevant to you. This is how YOU want to be treated…communicate it!
The final discussion based on the 5 Wishes is “what I want my loved ones to know.” This could be anything. Would you like to be buried or cremated? Where would you like to be buried or have your ashes remain? Ask for respect of your wishes, even if others may not agree. Discuss how you feel about death, your beliefs about “what is after”, forgiveness or how you would like to be remembered. This is an open ended discussion. Continue the conversation whenever you see fit.
Now you may be thinking ah, I need to discuss all of this with my parents or grandparents. They are aging after all. Yes, you should discuss this with your parents or grandparents, but the conversation should be two sided. Take the opportunity to share your wishes for yourself as well. Remember, tomorrow is not a guarantee.
Do you remember the personal phonebook your Mother kept up-to-date every year? It probably sat on a shelf in the family kitchen or office. It was filled with all the information you could ever need about your extended family and friends; addresses, phone numbers and birth dates. Its cover was probably a ridiculous flower pattern and you would have been mortified to have been seen carrying it around, but it was worth its weight in gold.
The first section of your family phonebook was probably a list of emergency contact information; the family’s general practitioner, the dentist, Aunt Susie, babysitter extraordinaire and the veterinarian (just in case Hank the Dog ate something he shouldn’t have.) Consider revamping or adding another page to the family phonebook and create your Go-To list of people and a checklist of useful information. The list can consist of, but is not limited to:
Caregivers’ Name & Numbers
Every situation is different. You may be the only caregiver for an ailing individual. You may be one of seven siblings caring for an ailing individual. Either way, it is important to have a current list of all individuals who are pertinent to making this caring process successful. Have a list of the first and last names of each individual, and all of their phone numbers; work, home and cell. You never know when you will need to get a hold of one of these individuals.
Helpful Tip: Once you have the names of all the caregivers written down, make as many photo copies as necessary and distribute the list to each of the caregivers. If the phone list is copied, every caregiver will have the up-to-date information of the other caregivers.
Attorney’s Name & Number
You may have several attorneys. As far as which attorney belongs in your quick-look checklist is up to you. Whichever attorney is responsible for dealing with matters pertaining to the ailing individual’s estate, trusts,living will and other pertinent information would be best for this section. Below, you will notice there is a small list of documents. These are suggestions of documents you may want to discuss and have in place. Your attorney should be able to help you with them.
Advanced Directive/Living Will
Power of Attorney
Name & Number of person appointed to Power of Attorney
You may or may not have an insurance broker. If you do, this individual may become your best friend. If you do not, do some research and find out who it is you need to talk to at your insurance company should you have any questions. Establish a relationship with this person so they become familiar with your situation.
Insurance is an interesting labyrinth and truly requires a professional to navigate. Questions concerning your deductible, which doctors are covered and which are not, how supplemental insurance works, how prescription deductibles work; the list goes on and on. How about when the person you are caring for qualifies for MediCare? What is your next step? These are all very real, difficult questions that should be discussed with your insurance broker. Make this person your ally.
What is tax deductible? What is not? Can I write off my gas for the three hour drive to a specialty medical facility? How about the rented medical bed and wheel chair? Are they deductible?
The list of questions for your CPA could be never ending; particularly if you are just beginning this journey. If you have an established relationship with your CPA, ask them to take some time to help you understand what it is that you should be tracking as far as finances. Things you may never have considered tracking previously may now make all the difference.
As time progresses and documents pass through hands, there may be a time when notarization is required to authenticate or complete a document. A notary acts as a neutral party and witness to documents being signed.
Helpful Tip: Make sure the notary you establish a relationship with has the ability to travel. The opportunity may arise that the person needing to sign the documentation is unable to travel.
End of Life Care
Have you discussed what your loved ones wishes are in their final day? Would they prefer to spend their final days at home, or in the hospital? Do you understand the difference between Palliative Care and Hospice? Do you have the recourses to contact these establishments?
First and foremost, ask your doctors and treatment facility staff member for recommendations of who to talk to about end of life care. There are usually social workers available to answer questions and point you in the correct direction.
Crematorium or Burial Facility
This may be a difficult name and number to write into the book. If you do not find it relevant, please pass by this section. Unfortunately for many, discussing the matter above can be a bit of an elephant in the room. Know what your loved one’s final wishes are. Would they like to be buried or cremated? Where would they like to be buried or have their ashes remain?
Helpful Tip: Know which establishment you would like to use and make prior arrangements. Once the end has come for the ailing individual, you will know exactly who to call to help with the next step. These people will be very supportive and knowledgeable.
Some of the above are obvious, while others are not so much. To be honest, what the list of people above does is require you to ask questions that are necessary, but uncomfortable. Take the time to ask the necessary questions.