The DNR, Funeral Planning, and Time for Me

Today in 2014, I mentioned on Facebook that my mother's horrendous bed wedge arrived (that matched her bedroom walls), that mom's cardiologist wasn't happy with mom's edema, and that I had discovered the DNR (Do Not Resuscitate) and posted it on the side of the refrigerator. That was a handy place, as the kitchen was located just off the entranceway.

The responses I received from my friends to this post were both heartfelt and expansive. Some of my friends went into great detail on how they handled their own parent's DNR and then segued into how their parent sat down to plan their own funerals. My mother did write her obituary, but she was certain no one would come to her funeral or memorial service, so she vetoed that idea. Hospice had other plans, though, and we did get to enjoy a service months after she died. We lost her obituary, though. That's another story.

The cardiologist was a contentious issue, because hospice wasn't happy with the number of visits that he wanted my mother to add to her schedule. Hospice, at that time and place, was into providing palliative care to make the patient comfortable. The cardiologist was intent on keeping my mother alive, which was going to prove to be a losing battle.

Interestingly, both the cardiologist and hospice agreed that my mother should continue to see her nephrologist, the doctor who specialized in the diagnosis and treatment of kidney disease. I think hospice felt it would be good to keep tabs on that one kidney mom had to know more in advance about when her kidney might give up the ghost. I agreed. Cartainty in the face of uncertainty, for me, was vital at the time. That was a healthier compromise for us all.

Another friend wanted me to find a massage therapist for me, not for my mother. But, as I told her, anytime I left the house, I could count on my mother having an emergency situation. I was thankful for mobile phones, but I still didn't have much freedom.

The one joy I allowed myself to have in my trips back and forth between Virginia and home was to stop at the Blenko Glass Factory in Milton, Cabell County, West Virginia. I would pick up one piece, resulting in several dozen pieces that I eventually sold on eBay. The piece I purchased on my last trip to Virginia that ended with mom's death was a rare one. White frosted glass with dimples. I still have that piece.

I took the photo above during one pit stop at Blenko. It was a very colorful place, and I always enjoyed browsing all the interesting shapes and textures. I do miss those visits.

The Unwanted Bed Wedge and Donations

Today in 2014 I wrote that my parents decided to delay the arrival of the hospital bed, because that decision seems so final. Mom chose, instead, to obtain a wedge for the bed she shared with dad so she could sleep with her chest elevated to help her breate better. What a mistake that decision turned out to be. That wedge was huge, she used it once, and it stayed with us until my father died. 

The wedge was blue to match the bedroom walls, removeable fabric-covered foam, about 27° angle, and it took up more than 1/2 of my parents' queen-sized bed. When mom used it, she said the bottom of her spine hurt. I knew what she meant, and that position wasn't the best for her, or for anyone for that matter. But, since hospice ordered it and my parents didn't pay for it, they kept it.

Since that wedge stayed past dad's demise, it was up to me to decide what to do with that durn thing. I donated it. I hope it found a good home.

Speaking of donations, plan now to decide what you want to pass on to your friends, family, children, etc. and which things need to be donated. I had to make those decitions alone for both parents, as my siblings live out west and weren't part of the day-to-day plans and outcomes regarding either parents' deaths. My parents didn't say a word about most of their items, and I didn't know to ask. I wish I did. My life would be so much easier.

Even now, many of my parents' belongings are sitting quietly down in my basement, waiting for me to decide what to do with them.

Hospice Arrives and Our Brains Hurt

On this day, 12 January in 2014, my parents and I were introduced to hospice for the first time in our lives. Although my parents had already lost their parents, the only experience they had with hospice (that I remember) was when dad's brother engaged with hospice to help take care of his dying wife in 2007. We were intrigued, and lodged that possibility of help in the backs of our brains for future use. Now was the time to see if it would work.

I noted in a Facebook post that hospice nurses drilled my father and I with our parts in taking care of mom. Our days would be filled with counting sodium mg (3 grams per day max), liquids (no more than 1,500 ML per day), tactics on how to shoot saline into various tubes protruding from my mother's body, how to change dressings, and learning how to operate two different oxygen systems. Dad did panic once when he couldn't replace the cap correctly on mom's bile duct catheter, but he eventually got it. He also cooked most of the evening's dinner and I picked up a baked chicken at Kroger.

I don't know how many chickens we consumed during mom's illness and especially after she died, but that's a story in itself. I pray for all the chickens.

The man who brought the oxygen was entertaining. Dad had a great time talking with him. The parents had a gas fireplace, and the oxygen man was especially leery of that contraption, but dad promised they wouldn't turn it on while oxygen was in the room. We eventually stored the tanks in the corner of their master bedroom, and we "hid" the current oxygen tank in use behind the easy chair in the living room.

Now we waited for all the "contraptions" to arrive, including a hospital bed, shower chair, wheelchair, and walker. Mom was on cloud nine with all the attention, but when everyone left she became surly about the incoming items, especially the hospital bed. Dad insisted on it, though, because of all the conveniences it offered. Mom was insistent on where to place it. It would go into the living room, where anyone who visited could see it.

That hospital bed eventually became the center of attention.

The Hospital Releases Mom

 

On this day in 2014, mom was allowed to return home from the hospital after being in their bed for ten full days. We really didn't expect a release until Monday, as this hospital wasn't fond of releasing patients on weekends. Today in 2014 was a Saturday, and mom was released in the early evening...another oddity.

The doctors had put her on oxygen, as her oxygen levels were low. This situation occurs many times for long-term patients and/or those patients who suffer from lowered immune systems or failing organs. I think we all learned a lot about oxygen levels during the COVID pandemic in 2020.

I wrote that the transition to hospice would begin Sunday morning at 10 am., an appointment that will assess mom's home situation and to conduct patient intake. This is when the real journey begins, as every day was a challenge between my mother had her mercurial attitudes (which she had all her life, not just with the experience of dying), and with learning new medical procedures that I would need to conduct should hospice be unavailable for any reason.

I still have the memory of mom leaving the hospital. It was cold outside, and the nurses brought two blankets from the hospital, which I still have. Those are some great quality blankets right there.

Differences Between Hospice and Palliative Care

When it comes to elderly relatives -- do you need palliative or hospice care?

It's World Hospice and Palliative Care Day, and this event provides a great opportunity to talk about the difference between hospice and palliative care. I'll be the first to admit that I didn't understand the difference between the two services until after mom was diagnosed with cholangiocarcinoma. I did understand hospice to a degree, as relatives had used this service prior to mom's diagnosis. The first time I really understood palliative care, however, was when mom received her first chemotherapy treatments.

After mom's failed Whipple surgery, the oncologist suggested chemotherapy to hold the cancer at bay. The doctors all told mom, without qualms, that her cancer was not "curable" and that the chemo treatments were "palliative." In other words, she would receive treatments that would stem the cancer cell growth until she could no longer take chemo. This was a "chemo for life" program, where "life" part meant that treatments would continue as long as mom could tolerate them.

There are no time restrictions in palliative care situations. Patients can receive palliative care at any stage of illness, whether that illness is terminal or not. The point behind palliative care is to provide comfort for the patient. This comfort is especially important for the patient when the the patient's disease is at its most uncomfortable.

Palliative care can be received at home, in the hospital, in a treatment center, or at a doctor's office. The fuzzy part of this type of care is that it covers a broad spectrum of diseases at various stages within that disease. The important thing to remember is that palliative care is not hospice, although hospice and palliative care go hand in hand.

Hospice is for end-of-life care, and it's all about palliative care...making the patient comfortable through various methods that range from Styrofoam wedges to make bed rest more comfortable to morphine to ease end-of-life pain. Although policy has it that hospice care is for the last six months of life, we learned that the local hospice had patients that were going on three years in treatment. On the other hand, some hospice patients barely see the oxygen tanks come through the door when they exit life.

Although hospice generally is ordered by the patient's primary-care physician* for end-of-life care, no one has a crystal ball. The practice of predicting someone's end of life sentence is based on both fact and guesses. Sometimes facts win. Sometimes guesses far surpass wildest hopes, especially when it comes to family members who don't want to lose that patient.

Interestingly, hospice couldn't begin for mom until her chemotherapy palliative care ended. That "chemo for life" program lasted as long as mom's body could tolerate the limited amount of chemo that she was taking. Since one oncologist earlier in mom's care had the guts to give us a time frame of three to six months of life without any treatment for her cancer, I had at least a base to work from after mom's chemo treatments ended. Mom's then-current oncologist must have known as well, as she ordered hospice for mom when she stopped mom's treatments, and that end to treatment came approximately six months  before mom's life ended.

Hospice provides palliative care, and that's the thrust of their services. In mom's case, however, another goal was imperative: that we try to keep mom out of the hospital. Her capacity to fight illness and infection was low, so home care was the best option. Additionally, mom wanted to die at home, and hospice made that goal a mission in mom's case.

To make a long story short, here are some major differences between hospice and palliative care:

1. Hospice services can be provided at home, where palliative services provided by medical professionals often are provided through a medical facility.
2. Palliative care knows no time restrictions, whereas hospice care is, supposedly, for the last six months of life.
3. Patients pay for palliative care the same way they would pay for any other treatment -- with cash, insurance, or other payment methods. Hospice, on the other hand, takes over the bills and everything is paid through Medicare. At least, that's the current structure in most cases. It's always good to check with your local medical facilities to understand your possibilities.

I can say nothing but good about mom's hospice care at this point, especially on a day when we honor the services provided by palliative and hospice care. The goal? To make these services better all around and as widely available as possible to people who need them.

* Primary care physician can be any type of doctor, from cardiologist to oncologist.

Respecting Mom's Wishes

Mom and me, 2005, Chicago

Since mom died, I can sit quietly for a moment or two and I can hear her in my heart. She helps me make decisions. She tells me what to do about some issues regarding her personal belongings and she also helps me find certain things. We have, despite our contentious love over the years, that deep connection.

So, when she said she never wanted a memorial service, I knew she felt strongly about this wish. I knew it in my gut. She had her reasons, and most of them concerned so many dead friends and relatives and so many people who would be under the expense and time burden of travel. Understandable.

Frankly, I don't know how I could have followed through on a memorial service immediately after her death anyway. I hadn't slept for three days or nights before she died. Dad also was wiped out. All we wanted was to be left alone. Just for three days. The only person who disrespected our wish was their former pastor. I wasn't surprised.

Beyond this wishing and hoping, sometimes things happen that are beyond a person's control. Hospice informed us shortly after mom's death that they hold a quarterly memorial service for all the patients who died during the previous quarter. So, we knew that mom would be included in a memorial service in September. Initially, this announcement caused some stress for me, because I wasn't sure I was going to be able to return for this event. Dad was totally dead set against attending, because he wanted to respect mom's wishes for no service whatsoever.

But, as the weeks rolled by, dad and I talked about how much hospice meant to mom. We felt that it might be a good idea if we attended out of respect for several people, especially, who meant so much to mom. Then, we began to ask neighbors and friends if they'd like to attend. A few weeks ago, hospice asked for three photographs of mom for the service, and dad picked the photos out himself (despite the fact that my brother was visiting and he wanted to help). Dad did a great job. The photo shown here is one he chose. My daughter took this photo of mom and me during my master's graduation day in Chicago in 2005. That was a great weekend. We had a lot of fun.

This afternoon we attended that service, which hospice screwed up a bit. They included individuals who had died in August, and they couldn't break those names out of the pack before this afternoon. So, the service was longer than usual, but it was beautiful. Mom loved it. Mom especially loved when her music therapist sang. One of the last songs he sang was the last song he sang for mom the day before she died. It was the Irish Blessing.

Mom's far from Irish, but she loved that man's voice and his soothing nature. I was happy to connect with him again and to thank him from the bottom of my heart.

During the service, I had to walk up to the front of the hosting church's sanctuary and symbolically plant a bulb in a pot for mom (daffodil -- a funny story I'll save for later). When I turned around, I saw everyone who was there for mom standing and holding me in their eyes -- two long church pew rows filled with people who loved mom beyond all sense and reason. Those people were our backbone, our spine. They were the very people who were there with us every step of the way during mom's illness, providing food, running errands, holding hands, talking, laughing, crying, hugging, praying.

And, that was what this afternoon was all about. Mom wanted it that way. I heard her in my heart and I'm glad we respected her wishes.

Not the Beginning, Not the End

There are times when the flow of life doesn't act like a river. Instead, that creative juice seems to shoot straight up like a geyser, only to evaporate. Or the waters seep underground, spreading under the earth's crust to form a renewable resource that can be life-sustaining. This blog is late coming into my project, but it arrives as a progeny of the latter resource...that underground resource that sustains my passion to write.

The picture shown here is of my mother, Joanne, when she graduated from high school in 1951. My mother was diagnosed in March 2013 with Stage IV Cholangiocarcinoma, or bile duct cancer. She died on June 6, 2014, at home. My father and I were with her.

I'm writing this blog to keep my friends, family, and supporters updated on my progress with the book I'm writing about my experiences as my mother's caregiver. I was her primary caregiver, although we used home health care and hospice, too. My mother didn't want me to take on that role for a number of reasons; but, at some point during the end of her life, she realized she didn't have a choice. Neither did I.

Now, I'm ready to finish that book, which is all about facing some harsh realities. What do you do when you realize there's no hope? What do you do when your loved one isn't a "cancer warrior" or a survivor? I plan to offer my experiences in some slim hope that what I endured can help you survive as a family member of a dying loved one. You can survive, even if your loved one doesn't.