The Grinch who stole Christmas from me has a name. Cancer. Talking about death and dying is not easy but being unprepared is worse.
This, being the first Christmas without my mother, certain topics started to churn and condense about this last year. Being who I am, writing about trauma helps me exorcise the specters that haunt me by sharing my observations, which could possibly help others.
Here’s a brief synopsis of my experience and then some tips:
My mother had stage four head and neck cancer (squamous cell) in 2001 that spread to her lymphatic system. She received oral surgery and radiation that left internal burns and restriction of her esophagus, so she could barely swallow even small pills and eat. Her speech was dramatic altered to the point of being unintelligible and the procedures left her scarred and disfigured. But, she went into remission.
Then, in 2012 the cancer came back. Surgery was performed and radioactive seeds were implanted in her jaw. In 2013, more cancer and surgeries and therapies. Now, she could not even swallow a pill and she lost weight to a dangerous degree, so they had to insert a feeding tube into her stomach through her abdomen. In 2014, more cancer and surgery. Now she was highly disfigured and not recognizable to people who had known her just a couple years before.
In 2015, you guessed it, more cancer. There once again was surgery and chemotherapy, potent chemotherapy with a variety of unpleasant side-effects. And yet, the aggressive cancer hid from scans even though they thought they cleared the “margins” with surgery. Once found, more chemotherapy in 2016 to shrink a new tumor so they could operate but the chemo did not do anything.
I was with her in the doctor’s office when she was given two months to live. May that never happen to you.
You should know that I had been her primary care giver from 2012 to the end, but also took care of her from 2001 to 2003 while she recovered from surgery and radiation. From transporting her to doctor visits at Yale New Haven Hospital 25 miles away along the treacherous I-95 corridor to getting her enough nutrition and all things in between, even filed appeals to denied insurance claims (I won both by the way). That was my life. Seven years plus and not counting assisting during her other bouts of prior debilitating illnesses and disabilities (non-cancer related), which would tally another five years or so. My work and personal life from the age of 24-27, 29-32, 36-42 all took a back seat. My time to write and study and be involved in the publishing/comic book industry was erratic. Life would be different for me if I had those years back but I sacrificed them because my mom sacrificed so much for me.
So, after she was given two month to live, and dealing with all the horrific attributes that accompanied living with cancer, another transition was set upon us. Hospice. I watched as my mother declined and did what I had to do in an effort to counter the misery. Then, my mother went into a coma, at home, for 18 days. She died on May 15th, 2016. I then arranged and dealt with her estate, finances, debts, and funeral services. There were other issues that had to be contended with but are unlikely to happen to most that I will not address them. It is my hope that this information can help in an overwhelming and emotionally tortured time.
When someone you love is diagnosed with a terminal illness, or one that could escalate, there are things that should be done before the condition takes control and all you can do is stand by to witness the suffering. And when the end comes, you will be stunned, stupefied, lost in grief, overwhelmed and in many cases unable to resume normal life for a while.
1) A will. Please, please, please, create a legal WILL even if you are young and strong. It clarifies not only to your family what the distribution of assets will be, it clarifies to probate court how to proceed and will speed up the process. Probate can take a year or more depending on circumstances. You do not need a lawyer unless you have considerable and contestable assets. You can get one online through NOLO’s website. All you need to do is pay a modest fee and fill out a questionnaire. It handles everything from distribution of assets to internment wishes and includes affidavits for beneficiaries to sign so court proceedings will be hastened. You will need to get the documents notarized. If you cannot go to one, you can look up mobile notaries online and they will come to you for a fee. $20 or so.
2) Power of attorney might be needed as well. If a loved one goes into a coma or become mentally incapacitated due to illness, bills need to be paid and finances directed. NOLO also offers this with the same will purchase. Better safe than sorry.
3) Hospice. Look at your insurance. Most have a hospice benefit. BUT, some might only have an in-patient benefit. This means that if your loved one wants to pass on at home, you must pay for it. Some visiting nurse companies with a hospice department will work with you though if you have a palliative care benefit, but other costs will be out of pocket and you won’t have the dedicated patient services like an at-home hospice provider.
4) Taxes: compile as you go all medical expenses beyond the deductible of the insurance benefits. This means travel related to the person’s condition, medical supplies paid for out-of-pocket, and doctor or therapy appointments. Basically, set up a system of folders where bills and receipts can be placed for tax deductions for the widow/widower or beneficiaries of the estate.
5) Set aside money for a funeral. These are far more expensive than most people think. Especially if you are under 45 and haven’t had to deal with this at the frequency of older adults. A simple service and casket doesn’t include other costs you might not have considered. There are handling and transport costs that are large. Also, collect all their bills and have them organized so they can be dealt with after the process is completed. Your mind will be scattered for a bit after the death. Trying to organize bills and a household will be difficult. I have a reasonably good memory and I forget and misplaced items all the time.
6) Caskets. You can buy a casket from a third party for wholesale prices and have them shipped to your funeral home. The funeral director cannot deny this though they will try to dissuade you.
7) At home care/hospice at home. Today, we are disconnected with death in many ways. Many die in hospitals. If your loved one wishes to die at home, there are few things to prepare. Some people can walk after given the prognosis but this might change. My mother could walk, though on unstable feet, up until the last week before she went into a coma for 18 days prior to her death. You will need a place for them to rest that is near a bathroom and you will need to get a walker and then a wheelchair that fits your house’s dimensions. Then you might not even be able to transport them on a wheelchair because of loss of muscle control and you will need to get a portable toilet from a medical supplier. Hospice nurses can assist you on that. Get baby wipes. Lysol. And latex gloves because you will need to assist them. Depends adult diapers will most likely come into play if they go into a coma like my mother. You will now need to perform the duties of a mother to baby, but with an adult. It is terrifying but you can get through it. I did.
8) Be there. Do not avoid the dying person because of your fears of mortality. This is an opportunity some people never have as their loved ones might die unexpectedly. They never get to say “Good Bye” or “I love you” one last time or have those precious last minutes with them. I had not played the guitar or sung for anyone since I was in a band in my 20’s. Choking back my anxiety, I played a song for my mom and even sang. That last smile is etched into my memory forever.
9) Animal care. If your loved one has a pet, allow them to be in contact with the animal. You might need to restrain the pet as they might get too excited and jump on the ill person, but the comfort of stroking your pet is soothing and decreases anxiety. You can get body harnesses to manipulate the animals if they are not well trained. Also, when the person dies, the pet will know. Most domesticated animals might not be able to perceive of their own future demise but they do recognize death. Make sure they have secure areas to be sheltered when the nurses and eventually the funeral attendants come to transport the body. You will preoccupied when the death occurs so have all the necessary supplies ready to take of the pet available.
10) Make clear paths around the patient and keep the area clean as possible for nurses, doctors or other people who might need access to the person.
11) Eat. This might sound obvious but I forgot to eat. The stress hormones and anxiety suppressed my appetite for weeks. You will need to keep your available glycogen steady. In advance, prepare food that can be froze or refrigerated. Not everyone has family or friend nearby who will come to your house with casseroles and feed you. If you have dietary restrictions, this is vital to your ability to function in the coming days.
12) Write an obituary while the person is alive so to get their input. Don’t say, “Hey, let’s write your obit.” You don’t want to increase their anxiety about mortality. Talk to them about the things that are important to them with their family, career, history, and what organizations/charities they support and this will give a more accurate depiction than a paying for a funeral home to write a scant submission.
13) This is directed at friends and acquaintance of the deceased. If you have not been a part of the deceased or dying person’s life recently, even if they mean a lot to you, and do not know the immediate family members, DO NOT insert your grief into theirs. DO NOT constantly contact the family with your recollections and such through means they did not request. If the family puts out a statement on Facebook through a public post, reply only to that post. DO NOT direct message them. They will already be inundated with message from their close friends and family. They did not ask you to do that, and now you have placed the burden of response upon them along with all the other duties. If you wish to contact them later, a month or so, after the initial post, that might be okay. I know people want to help and show their support, but do it through the channels the family provides. Honor the fact if they don’t want to be contacted. Take no offense. This isn’t about you. Also, not everyone shares the same religious beliefs. Always send your regards in a manner that does not exhibit this arrogance. Sending messages of remembrance, consolation, and support do not need to invoke specific gods or traditions. What consolations that might help you, might not help others. This is about the family and not you. DO NOT be a grief vampire.
14) Breathe. Breathe in. Breathe out. You will get through this in time. They say “Time heals all wounds” but that is not the case. This event is a transformation. You go from one state into another. This axial event is not a wound. Wounds heal and you are returned, more or less, to the previous condition of being. This does not happen. No one comes back from the dead. It takes time to adapt to the new reality. And it hurts. And it invokes fear of mortality. Do not avoid the pain like I did or you might just be sitting on the train to NYC and start bawling. It happened. I’m not ashamed to admit it. So cry. Scream. Write. Run until you are exhausted or workout. Hit the heavy bag. Listen to sad songs and weep uncontrollable into your pillow. Do what you must to face the fear head on. It hurts. It hurts like a thousand crows with beaks of steel ripping you apart. But it won’t hurt as much later if you face it. Do not expect this pain to vanish. It won’t. But it lessens and you will learn to cope over months.
15) This is a coping mechanism for grief and anxiety. Go out and help others. This allows for a sense of personal control but also to see positive outcomes created by helping others. It will also keep you busy so not all your waking hours are consumed by grief. Help others and help yourself.
16) If you don’t the needed funds to pay for a burial or services, you can create a GoFundMe page and pass the link along to your friends and family. This can also supplement day to day expenses. There are organizations connected to many terminal diseases and you might share the page with them so they can distribute the link to their members. It will take me years to financially recover from the expenses.
Yes, I paid for my mother’s funeral myself. Now, I must endure the loss of my mom and the money. But I did it gladly.
FOR THOSE WHO WISH TO HELP OTHERS GOING THROUGH THIS:
You can give people money directly with no strings, but some people are very proud and won’t take it. Like me. So, a 0% interest loan can be offered with no payment due dates. They can pay it back at their ability.
Or, if the deceased or the deceased family members own a business, contribute to that. Buy their merchandise, eat at their restaurant, and compel others to do so as well. Get others to contribute and tell them why.
This was very touching. People went and bought my books online after my mom died, and this meant a tremendous amount to me. Some of us like to help, but not be helped as if a charity. Some people even came to this website and bought comic books, and that was awesome because that helped the other members of Wayward Raven too.
There you have it. Common sense mostly. But having sense when under duress is something one must train for and prepare.
I hope you never need this information.
Joshua Lee Andrew Jones of Wayward Raven Media
Imbalance comes. Balance is restored.