May 17, 2015 · 9:00 am
My mother’s health took a big turn for the worse this week.
The hospice nurse expects her to pass in days, maybe a week, though her heart is very strong, so she could last longer.
For her sake, and mine, I hope that the suffering is not prolonged.
She is now totally bedridden, somewhat delirious and a new pain complaint has popped up the last two days. She now complains of severe head and neck pain. The nurse cannot figure out what may be causing it. It is unlikely that the colon cancer, if it has returned, spread to her brain, though it is a possibility.
But the morphine is not really touching the head pain, even when dosed hourly. She is so “zonked out” by the pain meds yet still is pointing to her head and grimacing. That is tough to watch.
Mom’s face has been taken over by that ghoulish death mask. Her eyes are starting to look beyond.
But her heart continues to beat hard and strong in her emaciated chest.
In one of her lucid moments, my mother asked what had happened to her. And to that, I had no good answer.
May 7, 2015 · 11:06 pm
I don’t like conflict. I like things to run smoothly and everyone to do their job. This is especially true during a crisis.
Of course, it is in these tough situations that conflicts and issues often arise.
I found out yesterday that after waiting over a week for hospice to begin, with my mom reporting an 8 out of 10 on the pain scale during every home health visit, that the hospice transition process had not even started! The home health agency told me I needed to talk to my mother’s primary care physician. But last week, when I was at the doctor’s office, I asked about starting hospice and the doctor’s staff told me the home health agency needed to fax them paperwork.
I was beyond frustrated. I don’t get angry very often but I was really furious. My mom had suffered needlessly for over a week because these two entities that work with each other all the time can’t get their acts together?
Since the local home health agency is now part of a larger corporation, I filed a complaint at the corporate level. I don’t generally like to throw people under the bus but I wanted action.
And it worked. Tomorrow a staff member is coming to transition Mom to home hospice.
I just wish I had been the angry advocate sooner.
August 24, 2012 · 9:13 pm
Today was a fruitless 10 hour hospital vigil waiting for the doctor to discharge Mom back to the nursing home. The doctor finally showed up at 5 p.m., spent about 3 minutes with Mom and gave the green light for discharge. Of course, by then it was too late in the day, so Mom is stuck in the hospital another night.
The woman sharing Mom’s room is very ill. She’s in renal failure and is refusing more treatment, which included dialysis and amputations of her hand and foot. Her family gathered today for the big decision.
There was tension, tears and bubbly giggles from the woman’s many grandkids. The doctor stressed to the family how the woman was capable of making this decision and how it should be honored.
While earlier it seemed things might get ugly, in the end, the family did the right thing. The woman will start home hospice tomorrow.
The family’s painful day made Mom and I think about Dad and the decisions made for his care.
One has to balance love with mercy in these situations. Often, people confuse the two but today, mercy won.
May 31, 2012 · 7:27 pm
I found out today that a former co-worker of mine has died. I had no idea he was ill, as I did not keep up with him after he left the company we worked together at. What I do remember of him was his white shock of hair, a warm smile and an easygoing spirit. Apparently some of his friends were having a life legacy box created for him. An organization has members who are woodworkers donate their time to create beautiful wooden boxes, which can be personalized. They can then be filled with mementos, letters, photos, etc. to honor one’s life. These boxes are delivered to those in hospice. The box is passed on to family members once the person passes. I think it is a beautiful concept.
It made me think about how Alzheimer’s, and I’m sure many other diseases, can overshadow one’s legacy. Years of decline, both physically and mentally, can strip away so much of what makes a person unique. What’s left behind is this shell of a person, who often seems numb and distorted from suffering and the medications designed to ease the suffering. But to allow those final images to dominate our memories allows the disease to win.
I thought about what I would put in a box for Dad. Definitely something green, probably a symbol of a shamrock to represent his birthplace. Maybe some rosary beads since he was Catholic. A picture of my parents when they were dating. A picture of Dad holding me as a baby. I would include a photo of the Titanic, because he loved to study the history of that ship. I’d probably put a cigarette in there, because so many of my memories of Dad include him smoking. (My mom still hasn’t thrown away the last pack of cigarettes that Dad had at home.) Can’t put a pint of beer in a box but maybe a Guinness coaster or ad, since that was one of his favorite brands. Maybe a tiny bottle of Old Brut, the cologne he wore the most. I’d throw in a Bing Crosby CD.
It’s kind of funny how my memories of Dad are a distinct mixture of virtue and vice.