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 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.