Monthly Archives: April 2015

Dying with dignity shouldn’t be so difficult

The last week my mom’s health has taken a steep decline. Barring some miraculous turnaround, it is fair to say she is actively dying.

Hard to believe this photo was taken just a little over a month ago.

Hard to believe this photo was taken just a little over a month ago.

While I have prepared myself for this moment, and have seen it coming for awhile, what I didn’t necessarily expect was how difficult it would be to just allow someone to die in peace and comfort.

I literally had to run all over town just to get prescription paid medicine for my mom. I know new regulations on controlled substances took effect this year, but frankly, if an addict wants narcotic pills they are going to get them no matter what. In the meantime, those who are legitimately in pain have to suffer.

The doctor made me go in person to pick up the prescription. They said they required a family member to pick it up, even the nurses at the home care agency my mom uses were forbidden from picking it up. Guess it’s good I just arrived in town! There is no way my mom could have made it to the doctor’s office.

There are plenty of pain-ridden people who live alone, what do these poor souls do?

And while I don’t necessarily want my mother to waste away in a hospital setting, I am surprised that the doctors keep sending her home from the ER. Uncontrollable pain, emaciated, can barely ambulate … I mean, geez, what does it take to be admitted to the hospital these days? The doctor told her she didn’t qualify for an inpatient stay under the new strict guidelines.

So we are starting hospice, but her overworked doctor has to sign off on it. I’m not too hopeful that it will be done quickly. While her doctor was off last week, my mom had no pain medicine and being cut off cold turkey really sent her health reeling into a death spiral.

So much red tape and regulations are getting in the way of treating people who are suffering with some form of dignity.

Family caregivers shouldn’t be left feeling helpless and devastated as they watch their loved one suffer needlessly.

I hope we can work together to advocate for better end-of-life treatment.

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One of those weeks caregivers dread

Last Monday, I tried to call Mom but her line was busy. This is not that unusual, so I didn’t think too much about it. A few minutes later, I received a call from an unknown number. By the time I Googled it and saw that it was the Lifeline number, the call had gone to voice mail. I immediately called back without waiting for the message.

Mom had slipped off the bed and fallen. She fell on her butt, thankfully, but was still sore and shaken up. Fortunately, she was checked out by EMS and seemed ok, so no ER visit was necessary.

Still, I fear it is the beginning of the “no longer can live at home alone” phase. Mom’s done pretty well this past week, all things considered, but the tricky part for caregivers is knowing when to make these key decisions for a loved one’s care.

Beautiful Elle, RIP.

Beautiful Elle, RIP.

At the same time that was going on, our 16-year-old cat was rapidly declining. A cancerous lesion on the roof of her mouth meant she could no longer eat without discomfort, even with pain medications. Sadly, over the last few years, I’ve become used to the euthanasia process. While thankful that we have that choice for pets, it is still brutally heartbreaking to have to make that decision.

My mom wishes she could be like the cat and just go on. She says she is ready and she is not afraid of what is beyond. She is miserable with being in constant pain, and having a loss of appetite and fatigue. The doctors are no closer to diagnosing her than before. Is the cancer back? She’ll have to have a colonoscopy to determine that, but at barely 100 pounds and weak, she’s in no shape for the preparation.

She also hates to be a burden on others. While certainly I can’t deny the stress the last few years have created, I don’t want my mother to feel guilt over something she cannot control.

With wry humor, I know that we are going to have to get a bigger shelf to hold all of our memorials, for people and pets lost over the years. It’s getting crowded up there.

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Psychology Today Post

Definitely can relate to this post with the health roller coaster my mom has been on for the last several months. As a caregiver, we can all use a reminder to take care of ourselves!

Barbara G. Matthews's avatarWhat to Do about Mama?

https://www.psychologytoday.com/blog/your-personal-renaissance/201504/ambushed-eldercare-you-re-not-alone

Ambushed by Eldercare? You’re Not Alone

7 strategies to help you cope

Post published by Diane Dreher Ph.D. on Apr 08, 2015 in Your Personal Renaissance

Source: Google Images labeled for reuse
Psychology Today
Late one night the phone rings. Your 80-year-old mother has had a heart attack and your life turns upside down, bringing worry, stress, anxiety, and uncertainty, your days punctuated by one crisis after another.

More than 54 million Americans are unpaid caregivers to their family members, two-thirds of whom are women (Matthews & Blank, 2013). Pulled in multiple directions at once, many are caring for their own children, as well as older relatives, and their numbers are only increasing as the population ages.

“It is a terrible situation to have so many people to care for and yet also have work responsibilities and other commitments—as well as the need to take care of oneself and remain sane,”…

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Guest article: The Disease of Forgetfulness

By Jami Hede of Exploring Dementia

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In 1901, German neuropsychiatrist Dr. Alois Alzheimer took up a position at the Institution for the Mentally Ill and for Epileptics, in Frankfurt, Germany. One of the first patients he examined there was a woman named Auguste Deter, who was 51 years old. Just a few years previously, Frau Deter had been a happy wife and mother, living a normal life for the time period. But then she began showing symptoms of memory loss, trouble sleeping, delusions, temporary vegetative states, dragging sheets around the house, and screaming for hours in the middle of the night. Poor Karl Deter had no choice but to admit her to the institution, because he just couldn’t care for her any more, and also continue to work to support their daughter.

In 1996, Frau Deter’s actual medical records were discovered, written in Dr. Alzheimer’s own handwriting (and her own, at times). The neuropsychiatrist made careful and accurate transcriptions of his interviews with his patient, and a short excerpt of them is given here:

“What is your name?”
“Auguste.”
“Family name?”
“Auguste.”
“What is your husband’s name?” – she hesitates, finally answers:
“I believe … Auguste.”
“Your husband?”
“Oh, so!”
“How old are you?”
“Fifty-one.”
“Where do you live?”
“Oh, you have been to our place”
“Are you married?”
“Oh, I am so confused.”
“Where are you right now?”
“Here and everywhere, here and now, you must not think badly of me.”
“Where are you at the moment?”
“We will live there.”
“Where is your bed?”
“Where should it be?”

Dr. Alzheimer asked Frau Deter many questions, including a test of her memory, and also asked her to write her name. She attempted the latter, but repeated, “I have lost myself.” She was then put into an isolation room, and when released ran out screaming, “I do not cut myself. I will not cut myself.”

In subsequent writings, Dr. Alzheimer described his patient as having no sense of time or place, and poor recall for details of her life, made frequent irrelevant and incoherent statements, had rapid and sudden mood changes, and often “accosted” other patients (who would then assault her). He indicated that he had previously seen patients who showed similar behaviors, but they were much older than Frau Deter. He used the term “presenile dementia” to describe her, and stated that she had the “Disease of Forgetfulness.”

In 1902, Dr. Alzheimer took up a position in Munich, where he worked with another neuropsychiatrist named Dr. Emil Kraepelin. (Dr. Kraepelin is quite well-known, in his own right, for work in the area of schizophrenia and other disorders.) He continued to follow Frau Deter’s case, however, and in 1906 was notified of her death, apparently due to sepsis related to an infected bedsore. He requested that her medical records and her brain be sent to him for further study. It was upon examining her brain that he discovered the neurofibrillary tangles and plaques which are now considered characteristic of the disease.

Dr. Alzheimer gave a very significant presentation to the 37 Conference of South-West German Psychiatrists, in November of 1906, in which he discussed the case of one Auguste D. The following year, he published an article in which he described “A serious disease of the cerebral cortex.” However, the person who first coined the term “Alzheimer’s Disease” was Dr. Kraepelin, and not Alzheimer. He first did this in writings published in 1910.

And the rest is history, as they say. Now, the disease which bears Alzheimer’s name is the most common of many different forms of dementia which have been reported since his time.

Source material is from Wikipedia, “The Lancet,” and others. For more informative articles about dementia, visit Exploring Dementia.

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Today would have been Dad’s 83rd birthday

I’ve actually been dealing with another health crisis with Mom (she’s doing better for the moment) but wanted to note that today would have been my dad’s 83rd birthday.

dad young man

This is the youngest photo of him that I have, and he wrote a lovely message on the back to his dear mother.

I love the serious pose, ready to conquer the world.

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Our fears are often misguided

Easter makes me think of eggs, of course, and how my dad avoided them like the plague. He feared having a high cholesterol level. Recent studies have debunked many of the previous reported links between egg consumption and high cholesterol, but when I was growing up in the 1970s-1980s, it was a big health focus.

easter eggs

As I got a little bit older and a tiny bit wiser, I thought it was strange that my dad would worry so much about eating one measly egg but smoked a pack or more of cigarettes each day. Surely the coffin nails would kill him via lung cancer before he developed heart disease.

We were both wrong. Despite the decades of smoking and the decades of egg aversion, Alzheimer’s claimed my dad’s life.

It made me think about how often our fears are misguided. We worry about x, when it’s really y that’s getting ready to do harm.

Fear is a valuable self-preservation tool, but it can also hold us back from our potential.

With both dementia and cancer prevalent in my family, I do think about what I eat and other lifestyle choices probably more than the average person.

But I also know I could get hit by a bus on my way to work.

There’s a balance there somewhere, everything in moderation, as the saying goes.

At least I’m going to enjoy my eggs.

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