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Guest Blogger Elaine Frankonis: Easing Into Death

While I am away in New York City for a couple of weeks, a fantastic group of elderbloggers and elderblog readers agreed to fill in for me. Today it is Elaine Frankonis known on the Web as Elaine of Kalilily. She has been blogging since 2001, having launched Kalilily Time a short while after she assumed responsibility as caregiver for her mother. One college professor, who quoted from one of Elaine's posts in an article for a history e-zine, described her as "not just a little ol' grandma raising hell at the keyboard." She makes every effort to live up to that description.


There was almost always a dead person in our house. My father was an undertaker and we lived on the second floor above two viewing rooms and the embalming room.

“Death” became something I accepted as “business as usual.” It happened every day to someone and sometimes that someone wound up resting in final splendor directly under my bedroom. “It's not the dead people you have to be afraid of,” my father used to remind me. “It's the live ones.”

Soon after my father retired, he discovered that he had inoperable pancreatic cancer and he began preparing himself to move to the other side of the equation. If he was afraid of dying, he never showed it. In a way, I think, his professional life had prepared him for that moment.

My father died in his own bed at home, receiving palliative care from his priest, Visiting Nurses, and from the morphine we administered with an eye dropper. He was able to ease into death with minimal pain and with all of us beside him.

Palliative care does not try to treat or cure the illness.

Palliative care are services designed to provide relief of symptoms that interfere with quality of life when treatments won't change the time course of the illness. It is the care given to improve the quality of life of patients who have a serious or life-threatening disease, in which the focus is on relieving rather than curing the symptoms.

As I watch my mother (who is 93, has severe dementia and often seems to be in both physical and mental pain but can't communicate the source) continue to exist in a body with no real quality of life, I start researching what could be done to “keep her comfortable” - which is what a neurologist suggested. Yet, none of the prescription medications she has tried has been able to do that.

I wonder if she would be better off in a nursing home where, I suppose, all they really could do is stick her in a wheelchair and medicate her into one of those dozing, drooling bodies that they park somewhere in a corner. Would that mean she was comfortable or would it mean she was just knocked out?

But my mother, who has no “terminal illness,” can still walk and eat with help, is still continent, is sometimes aware. And she also is old and frightened and disoriented and angry. And she cries. She hurts. Yet no doctor has been able to prescribe something that is able to simply make her feel comfortable without totally sedating her.

She is not really “dying,” they say, so morphine is not appropriate. Except that she IS dying. She's 93, and her life is pretty much devoid of anything you could call "quality."

I finally come upon an article in the Quality of Life Care website that articulates my frustration with the lack of palliative care for someone in her situation. Here is what the article, Palliative Care for Dementia has to say:

”To me, some of the most disturbing symptoms of dementia are emotional and mental pain. It can be devastating for everyone, but not as much as for the person who is sitting with that kind of discomfort. Medical professionals are getting better with the physical manifestations but when it comes to emotional anguish, we don’t do so well. The reasons for unsuccessful treatment are varied. People who are close to the person, either personally or professionally, are very passionate in their views about how to handle it. It makes it hard to have an open mind.

“Have you ever walked through a nursing home and hear the same person screaming over and over again? Do you say to yourself, 'oh there’s Mr. So-and-So, he’s at it again, or 'I wish she’d stop yelling like that, why they won’t do something?' Or, are you so used to it that you walk right on by undisturbed?

“The person is experiencing emotional pain, plain and simple.

“If the person can be soothed by your presence or the presence of another and you can be with them most of the time, then you are very lucky. But what if you can’t be there? What if your parent at the nursing home is one of the people who is constantly angry or yelling or ‘causing trouble?’ What if you don’t have the money to hire a sitter to be with them most of the day? Please know there is not one nursing home that has the staff to sit with your loved one much. Maybe, maybe 10 minutes tops, here and there. They cannot do it and they don’t. They are too busy with all the other residents.

“So what’s left? Hope they get better? Tell ourselves that what they are afraid of isn’t real so it’s OK? Tell ourselves that she was always bitter/angry/dramatic/an attention seeker and this is nothing new so it’s alright? Even if that is true, it doesn’t change the fact that she is in emotional/mental pain.

“What are we supposed to do? To hope that it will stop is usually where most of us begin. What is the only solution if the emotional/mental pain doesn’t go away? The answer is some form of treatment or substance introduced orally or topically or energetically. We start with whatever we believe in and go from there. If we’re open to non-western types of healing, then we can try acupuncture, aromatherapy, reikki, essential oils and any of the other modalities. If they don’t work, and there is nothing left to try from the array of non-psychotropic medications for dementia, then we can try using medications from the anti-psychotic and/or anti-anxiety class.

“'No, it’s too dangerous,' we say. It will prematurely kill them. It may kill them just like any other drug can, it is true. No drug should be used without careful consideration. There are always risks to every medication and always trade offs. Emotional pain doesn’t dangle like a broken arm and it requires treatment just like the broken arm does. They have a broken heart and a broken mind.

“Imagine the last time you were hurt, angry, really offended or really sad. Sit in that for a minute. Now imagine you have no rational defense against it. You have no reasoning power to talk yourself out of it or to change your focus and think about something else. Its not that you are not a positive thinker, it is that your brain has deteriorated and the electrical impulses are not firing the same. There is deteriorating physiological changes in the organ of your brain.

“With both medical professionals and families alike, there are many who believe we are ’sedating’ a person when we give them medication for emotional/mental distress. Know that if a person is sedated, then they are getting too much of the drug or they are getting the wrong drug. If our belief is to give medication for physiological disease processes, and we accept that their dementia is a physiological disease process, why is our reluctance to treat them medicinally so emotionally loaded for us?

“When I walk by an elder with advanced dementia that I know is consistently distressed, I think about if that were me. In that condition, I would be powerless against my thoughts and feelings with no defense against them. My hope is someone would advocate for me and begin the process of finding a medication that worked. I hope they would continue to change doses and medications until I was pleasantly enjoying my day, even if I had to take an extra nap or two. Naps are great.

“What would you want?”

I know what I would want.

I am not afraid of being dead. I'm afraid that I will wind up like my mother, imprisoned in some personal hell (or at least a purgatory), while death takes its leisurely time setting me free.

What I would want is something like medicinal marijuana to help me to feel relaxed and happy, to FEEL easy and carefree, even if that that feeling were only a drug-induced illusion. But “feel-good” drugs are illegal and so, while those who don't necessarily need them can get them illegally, those who could medically benefit from them are left to suffer, and often not in silence either.

There is growing support for the legalization of marijuana use for medicinal and palliative purposes. From here:

”Medical marijuana is one of the most widely supported issues in drug policy reform. Numerous published studies suggest that marijuana has medical value in treating patients with serious illnesses such as AIDS, glaucoma, cancer, multiple sclerosis, epilepsy, and chronic pain. In 1999, the Institute of Medicine, in the most comprehensive study of medical marijuana's efficacy to date, concluded, 'Nausea, appetite loss, pain and anxiety...all can be mitigated by marijuana.' “Allowing patients legal access to medical marijuana has been discussed by numerous organizations, including the AIDS Action Council, American Bar Association, American Public Health Association, California Medical Association, National Association of Attorneys General, and several state nurses associations. “Public opinion is also in favor of ending the prohibition of medical marijuana. According to a 1999 Gallup poll, 73% of Americans are in favor of 'making marijuana legally available for doctors to prescribe in order to reduce pain and suffering.' In a 2004 poll commissioned by AARP, 72% of Americans ages 45 and older thought marijuana should be legal for medicinal purposes if recommended by a doctor. Also, since 1996, voters in eight states plus the District of Columbia have passed favorable medical marijuana ballot initiatives.”

There are only 14 states that allow the use of medical marijuana and New York State, where my mother lives, is not one of them, although legislation is being discussed.

Meanwhile, while politicians discuss, law enforcement resists and the medical profession debates, very old people like my mother spend their last months (maybe years) in unnecessary mental, emotional and physical pain.

I know what I would want.

EDITORIAL NOTE: While I am away, The Elder Storytelling Place is on hiatus. You can read past stories here. And if you are inclined, you could send in stories for publication when I return. All elders, 50 and older, are welcome to submit stories for this blog. They can be fiction, non-fiction, poetry, memoir, etc. Instructions for submitting are here.

Comments

I've had occasion in my work to see dementia at work in various stages and how individuals experience the effects differently. Obtaining treatment to alleviate the seeming distress of some patients you describe is highly desirable. Given all the other legal medications doctors can prescribe I've always had difficulty understanding the justification for excluding marijuana. There are benefits and negatives associated with all our meds, but we're allowed to use them.

My MIL who is 80 and has rheumatoid arthritis would agree with you. She says old people should be able to have opium. My FIL was prescribed pain killers for a few days and he was very very happy. He's usually in a good frame of mind and content living here next door to us, except that he is anxious about losing his ability to drive his beloved car and his independence.
I hope there will be better ways to help them in the years to come.

Having been the main caretaker for my mother, and ultimately putting her in a nursing home sadly conjures up what you describe here “unnecessary mental, emotional and physical pain.” I regret not being able to make her final years less miserable. I feel certain I would want what you want!

If it were me, by all means, sedate me. Anti-anxiety drugs, anti-depressants, opiods... anything. I can't imagine why anybody would oppose it. It's not pleasant to see somebody nodding off in a wheelchair at the nurse's station, but keeping them alert to ease *our* discomfort is wrong.

There was a woman at my Mom's nursing home who would cry out over and over, "Please God, don't let me die like this."

And, yes, I walked by.

Yes, they only have so much time to help the patients. We tried to keep our friend Duck at home. He wandered, he got lost, and finally he fell. He also itched. In his dementia, he would endlessly scratch his legs until he was bleeding everywhere. Just trying to get the nursing staff to put ointment on his itches was a massive struggle.

He didn't yell....tho there was a man down the hall who did, but he scratched his legs until the day he died. Maybe pot would have helped his itchies as I know it would have helped the man down the hall.

What would I want? To doze away my last days, please.

Thank you so much for this.

What an incredible, thought provoking post. As a former nurse, and one who has worked in long term care, I could not agree with you more. And now, my own Mom who is 95 lives in an assisted living.

She is not this far gone but I so remember the screams, the calling out. Yes it helped momentarily to soothe these individuals with soft talk and gentle stroking of the hand.

But no one really wants to deal with this in the medical profession. Doctors only come once a month to see patients in nursing homes in typical settings. In some settings, fortunately, the more modern in approach, the doctor is on staff and is there daily. Yes they now prescribe drugs not to the level they should but at least some help.

I hope we can bring this to the attention of healthcare professionals.....I fear the dialogue of adding narcotics or smoking "joints" would be taken on my others as the wrong thing to do...or taking a role that belongs to the Man upstairs.

But your raise good points that must be addressed. For me, if I ever reach the pointed of dementia, I want to be put to sleep....that is not living.

Well said, Elaine. The stupid thing is that in days gone by marijuana was used, perfectly legally, for all sorts of things. (I was even given it as a child to see if it helped my asthma.) There was always one of the little wooden drawers in the old-fashioned pharmacies that had 'Cannabis' stencilled on it. I know for sure that if I had the care of a distressed elder who needed pain relief - physical or mental - I would be growing marijuana in my garden, in amongst the other plants, and baking it into the brownies, just like we used to do when I was in my twenties. (And if you're worried about the helicopters, it's easy to grow under lights in the cupboard under the stairs. Millions do just that.) Old age and anarchy go well together, IMO.

If possible, seek out a consultation with a palliative care physician. Many urban hospitals now have them on staff. They use a much wider variety of treatments and medications than non-specialists. One of them is a medication that contains the active ingredient in marijuana, but there are many others.

Thanks for a very painful and thought-provoking article. Peg

Thanks Elaine for this fine article. Having been both professional caregiver (RN)& now family caregiver I couldn't agree with you more. Bring on the joints & hash laced brownies!! How long did it take for the wonderful Brits to develop the hospice concept & the Brampton's cocktail? Bless them. 100 years ago, I worked with a wonderful humanitarian MD who gave all of his patients a choice of cocktails if they were terminally ill. (Before "Code blues" & ventilators!)For the Italians it was wine & the Germans mostly beer & then some preferred a "highball." That way we avoided morphine until the very last few hours, families were pleased & could also share, if the nun approved. All in all, it was a very good thing. What will it take to treat our demented loved ones the same way or others with chronic illness? Pray that those with power will be enlightened. Peace. Dee

Not sure most of the patients in nursing homes I've been observant of couldn't easily partake in a toke, however, I can't see why they couldn't eat special brownies, as Marion suggested, or even take the chemical in pill form.

Ignorance and fear of the general public,(not to mention religious zealot nutcases) have caused the medical field to disregard the medicinal qualities of marijuana.

One foot in a Star Trek future, and one foot in the superstitious small-minded past; mankind has only boldly gone in a minutiae of steps in terms of medicine.

Ahem, I should have proofread a little more carefully - the corrected version:

Not sure most of the patients in nursing homes I've been observant of COULD easily partake in a toke, however, I can't see why they couldn't eat special brownies, as Marion suggested, or even take the chemical in pill form.

Ignorance and fear BY the general public,(not to mention religious zealot nutcases) have caused the medical field to disregard the medicinal qualities of marijuana.

One foot in a Star Trek future, and one foot in the superstitious small-minded past; mankind has only boldly gone in a minutiae of steps in terms of medicine.

Thanks for your post. After seeing struggling with these end-life issues with family and friends I am yet again rewriting my medical will, to add things such as this. I don't wish to die that way either. The powers that be need to hear from us all. I know my mother dying of emphysema could have used a few "brownies." The fear and anxiety she experienced while slowly suffocating to death was heart wrenching. She did receive pallative care at the end, but I think it should have started sooner.

What a wonderful post. Thank you for sharing and for your thoughts. I could not agree more with your conclusions, and going through something similar right now with my Mother In Law makes all these thoughts come home.

We need a champion to rally us all to move for more honest and true care. Meanwhile I continue to advocate and pray with all of you.

What I would call John Updike's "Last words and testament" has recently been published Alfred A. Knopf. It's in a book of his poetry entitled "Endpoint and other poems" and is a chronicle of the author's last few months as well as some mementoes of other times. It is a very moving and engrossing account of Updike's journey towards death and the pain and suffering that frequently is an integral part of the journey. Updike was a contemporary - just two years my senior and my literary mentor and role model for more than fifty years. Another man's view of "easing into death" , which many will find rewarding and (perhaps) reassuring.

I had better get the Updike book, "Last Words and Testament" mentioned by mythester because after reading this post I am very afraid.

When my husband was in the nursing home one woman cried out with every breath the word, "Help." Another woman would plaintively cry, "Mama, why don't you love me?" and a third would say, "Oh boy, oh boy, oh boy." It was easy to think that they were so far gone they didn't know what they were saying. Now, to realize that they were really suffering makes me fear the onset of dementia for myself and for my family. I hope that medical science will allow any and all palliative help available, including Marijuana, if I, God forbid, reach that stage.

You have courageously (the word is not strong enough) faced your mother's suffering and in sharing your truth here, the sadness I have been feeling more than a dozen years watching my mother, age 98, go deeper (wider?) into dementia is compounded. Yet I thank you endlessly because lies ultimately are exposed, and covering up really just pushes out the day of reckoning and the chance to understand better and thus, perhaps act appropriately.

Hi there, everyone...

What a fine bunch of conversation you've been having. I've barely had time to drop in much - but I have managed to read all the comments. Apparently this place runs quite nicely without me.

The conference ended earlier today - six days jampacked with the most brilliant minds on aging issues in the country. I'm so privileged to have been able to attend. I have much to tell you over the coming weeks and months.

Now I'm going to relax for a few days, see some old friends and walk around the old neighborhood while I try to sort out all that I've learned.

I've missed you,
Ronni

Excellent post. Can relate. Mom is 86 and in great health, mentally & physically. She loathes the idea of ever going into a home & we all agree. I too don't want to end up in a place like that either, and would rather bump myself off than be driven there against my will.

Some people are going to Holland to die their own way. Others pray they fade away in their sleep. Mom hates talking to seniors who rail on about their health woes. She feels that could jinx her good fortune/genes.

I wouldn't want to die in pain, so I'd choose pot, rather than hard drug pain pills. So far, I'm healthy like mom, no medication. Thank you, whoever put me on this earth.

This is a great topic that we should explore deeply and carefully. We're all heading in the same direction, so let us attempt to make the trip go smoooooth.

Elaine: Thank you for this incredible insightful post!

You've done a wonderful job of addressing an issue (and fear) that lurks in a corner of every elder's mind.

Again, thank you my friend. What do you say we elderbloggers email bomb all our legisltors (local, state and national); doctors, medical associations and medical schools; and law enforcement? It can't hurt and might help.

Contentment. When we can’t find a cure for a disease, then contentment is the next best option. Release from emotional hell.

The ridiculous idea that someone in such a state of dementia (or in chronic physical pain) is left to suffer because they might get addicted to a substance is part of our puritan heritage. Who cares? Might they die a few days or weeks before they would have if they hadn’t had such treatment? Maybe. If those last months, weeks or days could be relatively content rather than emotional hell, wouldn’t most of us choose that for ourselves?

People need relief from the ravages of a disease from which they will not recover. If there is a means to help them, they should have access to it.

I cared for seven elders over a span of 20 years, and coped with four of them having different dementias. Dementia is, to me, worse than the physical pain. Both should be treated. European nations do a far better job than we do in the States.

This is a wonderful blog. Keep up the good work.

Carol Bradley Bursack
Minding Our Elders

Great post and am in total agreement with your choice.

Came across this http://www.dailymail.co.uk/health/article-558849/New-hope-Alzheimers-sufferers-new-treatment-restores-memory-minutes.html in UK paper. It gives information on current experimental and dramatic new drug treatment by University of California.

It's heartbreaking to read about your mother's situation.

I'm in favor of most ANYTHING that can offer relief to anyone in the same or similar position. In fact, it seems criminal NOT to.

Believe me, if I knew where to get some seeds, I would grow a few plants in amongst the garden foliage. But it's not the 60s any more....

And lest you all think I'm some sort of saint for taking care of my mother, in truth, as of 6 months ago, I left my mother in my brother's care, since he has control of her finances and every other aspect of her life. I couldn't stand to be there and not have any say in how she was medicated. (And my brother added such stress to my own existence that I couldn't take it any more.)

I know that in state's where medical marijuana is legal, they even have it in liquid form.

Here's hoping there are some changes coming soon.

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