There are some things we should never skimp on…money wise, time wise.

I don’t often write of such things because everyone does their own thing for their own reasons. Regardless, something happened at work that drives home the need to remind myself and others:
TAKE CARE OF YOURSELF!!

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One reason I hate nursing homes is the lack of activities. Sure, there’s bingo and sing a longs. For those who are mentally capable of participating. There might be some puzzles and painting and the better homes offer up an outing every week or two. But it just doesn’t come close to the level of living our elderly people once enjoyed. People who reside in nursing homes are often depressed, lonely and BORED. For better or worse, this is the accepted trade off for their safety.

When she came to live with me, I made a promise to Marion: That she would once again get out into her world, and live her life as best she can…of course, Marion is demented and didn’t understand nor remember this vow…but I did and STILL DO.

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I posted this at ARS but decided to move it here.

This is Lauren.

SHE is what some people are calling a vegetable. Who has less rights than an animal; who, by court order could be killed by dehydration very soon. Just like they did to Terri. Just remember this: If a dog is “put to sleep” via starvation and dehydration it is considered cruel and unusual. But when a human being is put to “sleep” like this it’s called ethical, and humane.

Read more about Lauren here.

Today we did something totally different.

In my work with people who have dementia, I always noticed some common things among them all. They go back through time, through their lives and often end up in their early teen years, where they stay for awhile. Most people with dementia reach a point where they no longer care about their personal appearance; many take on traits that shock their families. For example, an always modest woman will frequently become what we call a “stripper”- she loses all modesty and prefers to be naked ALL the time and could care less who is around. A man who spent his life in shorts will often become a man who over dresses and hides as much skin as he can. It’s strange phenomena and its common.

Marion has been doing so much better. She amazes me with her abilities she has retained in spite of her dx with Alzheimer’s Disease. She’s was dx three years ago and her family believes she’s been demented for about 6 or 7 years altogether. I suspect this to be true. She is 87 years old. She’s been through a lot in the past year. It’s rare to see people with dementia improve without medication.

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“The question is not whether we will die, but how we will live.”

-Joan Borysenko

For some, the question is: Will they kill me before I have a chance to live?

The emotionally shaken father of a 16-year-old girl in an irreversible coma at Montefiore Medical Center is wavering in his opposition to ending what’s left of her life.

“I’m 85% changed in my mind now, but I don’t know the legality,” said Leonard Peters, whose daughter Javona Peters is in a permanent vegetative state after what was supposed to be a routine operation on Oct. 17.
[…]
Javona’s mother, Janet Joseph, has said she wants “to let Javona go in peace” by taking her off her feeding tube. The case is set for a Jan. 7 hearing in Bronx Supreme Court.

The case, first disclosed Wednesday in The News, has attracted national media attention to what could be another right-to-life battle, as in the Terri Schiavo case.

Javona was a healthy, outgoing high school junior until she went into the operating room 10 weeks ago. Now she is blind, deaf and unable to move, think or eat on her own.

October 17th? of this year? It’s too soon to make the rush for death here. Way too soon.

Remember little Haleigh Poutre? The 11 yr old girl in MA, who was beaten into a coma? Her doctors told everyone she was brain dead too; that she was blind, deaf and in a vegetative state. The MA supreme Court had even given it’s legal blessing to the hospital where Haleigh was staying- to pull her off life supports. They were hours away from doing this when Haleigh woke up. She’s made remarkable progress and continues to do so at a rehab center in northern MA.

What’s the rush?

Joseph has asked the courts to appoint her Javona’s guardian so she can finally pull the plug and also begin a medical malpractice action against the hospital.

Javona’s parents say hospital officials have never satisfactorily explained what happened to their daughter.

Montefiore maintains her condition was caused by oxygen deprivation triggered by an “extremely rare” allergic reaction to “a routine anesthesia agent.”

Javona’s operation was a ventriculostomy, a routine procedure that involves boring a hole in the brain to drain cerebral fluid into a cavity.

Javona’s Mother can sue the hospital NOW; she need not have a dead daughter to do so. Of course, a dead child would up the ante in any settlement. A dead child always produces more cash in these situations.

The operation Javona underwent is anything but routine, for a normal healthy girl. I suspect she had other problems we’re not hearing about right now. Nonetheless, tragically she had a reaction to the anesthesia and apparently the OR staff didn’t catch this until she been oxygen deprived for too long.

At my work we recently took care of a 12 yr old boy who underwent a routine operation, having his tonsils removed; he too had a severe reaction to the anesthesia; he didn’t go long without 02, though. But his brain reacted as though he had. He was in a coma for 14 weeks. No one gave up on him and he woke up, delved into rehab and walked out of my facility with a big smile on his face. He is able to do all his own things again- and now he’s back in his school getting ready to play basketball.

Meanwhile, the hospital has told Joseph it’s time for her daughter to be transferred to a permanent nursing facility. The hospital contends there is nothing more it can do for Javona.

Given some hope, she might live.

Javona should be transferred to a rehab facility for a short term evaluation and coma-stimulation program. Given time she might wake up; given good nursing care she might recover from the medical aspects of all this. I think people are too focused on the monetary “awards” of these situations. Sure, parents are grieved and saddened. But they often keep their eye on a prize that makes me question the motives here. Medical people are not always right. Especially in situations where brain “death” is concerned. We know SO LITTLE about how the brain works. We do know that what we often label “Brain Dead” suddenly comes back to life though, with no warning.

There is one thing common about those who wake up: They were given time. Why the rush?

How much neglect can the human spirit endure before it’s too late to save it?

A lot.

WASHINGTON (AP) - Toddlers rescued from orphanages and placed in good foster homes score dramatically higher on IQ tests years later than children who were left behind, concludes a one-of-a-kind project in Romania that has profound implications for child welfare around the globe.

The boost meant the difference between borderline retardation and average intelligence for some youngsters.

Most important, children removed from orphanages before age 2 had the biggest improvement - key new evidence of a sensitive period for brain development, according to the U.S. team that conducted the research.

This is about very young children and babies. But the same can be said for older adults as well. I know of no studies that speak to it, but I know from personal and professional experience that very old, frail and even demented people can thrive when given some attention.

Several months ago my brother and his wife placed her mother in a local nursing home. Marion has Alzheimer’s disease. She was DX with this three years ago and currently she is in the mid stages of this dreaded disease. Marion still recognizes herself, and she is capable of doing a lot of her own things. The problems she faces surround short term forgetfulness which leads to unsafe behavior and activity. Marion is able to swallow her medications, but she forgets when to take them, or she forgets that she already took them…She is able to boil an egg, but forgets to turn the stove off…she also forgets what time period she is in- she constantly seeks her little children who never come home…this causes her to panic and get very upset.

For many reasons my brother and his wife could not take Marion into their home. I’m not impressed with the reasons and excuses, and it’s caused some discontent between us all. We’re grown ups though and can get over this. They chose to place Marion in a nursing home, a good one, near their home town…visits were only minutes away. He did most of the work on my house last September, and part of a deal we made was for me to oversee Marion’s care at the nursing home. It’s been a rough ride.

At first Marion had to adjust to life in a place where her personal habits were no longer important. Her identity and soul got lost among the many needs of other residents (who also faced the same problems and issues). While she was able to adapt to the physical surroundings, she never quite fit in with the overall environment of the nursing home. She wandered a lot, looking for her lost children…she became more and more confused as different staff worked with her day in and day out. Mind you, I was there every day except weekends. I went to visit her at different meals- to spend time with her and to assess her progress or decline as it turned out to be.

When I was there, she never had accidental voids…and up until the last few weeks she was feeding herself. The staff were great but extremely overworked and burdened. The aides loved it when I came by because I would help them. The nurses were grateful to have an extra set of eyes in the dining rooms at mealtimes. Of course management wasn’t overly impressed with ME, simply because I held them to account when things weren’t right. Short staffing, cold food and missing supplies irked me to no end and the DON/Administrator heard about it.

I assisted Marion with her meals and became fond of some of the other residents, who gravitated to our table.

It became a fun time. Instead of just sitting there talking about the weather, we would use these moments for an activity. Using my prior experiences from working with people with dementia, I got some books that are designed to open up discussions- as silly as it sounds, there are dozens of books written for this purpose…trivia from the old days; little stories about life in the 1930’s, 40’s and 50’s and so on…Marion was a homemaker, so some of these discussions were right up her alley. One of our table mates, Thomas, was a Judge. He really loved our discussions that came from stories in books called You Be The Judge. Another thing we did was cook the meals; up until late October we grilled burgers and hot dogs and steaks outside on the patio…Marion and her new “friends” made the salads and desserts. It wasn’t a big deal to spend a few hours each day at the nursing home. In exchange for this I was able to make the lives of a few people a little better, even if they would soon forget. For those hours, these people had rediscovered their spirit and sense of being. They thrived.

The normal daily doings of nursing homes don’t allow for such time from the staff. They have tasks to perform; they have assignments with 10 or 12 residents; they are busting their asses trying to get it all done. Nursing homes have activity professionals whose job is to entertain the residents. More than that, they must write individual activity plans for each resident. Often it is one person responsible for ALL of this. How can one person spend quality time with so many? They can’t…so most activities are delivered to a large group at the same time.

I can’t count the times I have witnessed these large groups in action- where half the residents are slumped over in their wheelchairs, the other half is participating in the Sing-A-Long. Some residents recall the words to the song and others don’t…or, the exercise groups, where again some can do and others cannot. In my mind, nothing is more humiliating than having to sit through and watch others do things you can no longer do; no wonder so many shut down and fall asleep…they can’t get involved- the activity is too far advanced for most with dementia. Large groups draw attention to those who can do, and those who cannot do. But it’s the way of it.

So it went for four months…my almost daily visits turned into fun times for most, and all was as well as can be expected. Until three weeks ago. The nursing home was short staffed; one of the nurses decided to group all the residents in one room, to supervise them all. Marion was placed into a recliner, to prevent her from wandering. This was a restraint and they knew that. She tried to get up and her legs got caught in the reclining apparatus, she fell and broke her hip. So much for good supervision.

From this time on it’s been downhill. Marion had to be bed bound…she could be out of her bed, but that meant someone would have to stay with her since she forgets she shouldn’t walk…it also meant another big risk for another fall. The nurses medicated Marion to the point she was totally out of it, as they say. Under some guise of pain control, they managed to keep her sedated 24 hours a day. She stopped eating. And drinking. She became incontinent. She grew weak and couldn’t move herself around in her bed. What happens to a person who is stuck in a bed, for weeks at a time, with poor nutrition and even worse nursing care? The lack of repositioning and turning led to a bed sore which quickly became infected. That infection spread to her blood…and Marion was suddenly dying.

It happened to fast. As it always does. Everyone gave up hope. No one could see how the environment was the killer here, not the infection. My brother was the last person who saw this for what is was: An institutionally induced series of events that was leading to the death of a woman, who was no where near ready for that. In her normal stage, demented and slightly frail, she could be expected to live another two to three years if not more. But, because of unintentional neglect, she faced a painful and unnecessary death.

What to do? Plead with my brother about taking Marion out of the nursing home and into his home. Nope, he wouldn’t do it. His wife wouldn’t have any part of it…her reasons? She didn’t have the time and patience to care for her own Mother who has Alzheimer’s disease…my SIL didn’t want to see her home wrecked by the intrusion of a human being who might urinate on the plush wall to wall carpeting they just had installed; she might defecate all over the house; she might do this, do that…

Fuck. Babies do that but it’s okay…they outgrow it. Fiction tells us old people face this fate.

Incontinence is NOT a normal thing for elderly people…it is normal for elderly people who are institutionalized however. When you know someone’s routines, you can prevent this from ever being an issue. But it was more than this. Bringing in an old lady into her home was just too inconvenient for my SIL, who lives the good life in a fancy house my brother worked hard to provide for her. The easy solution was the nursing home, even when its cost might be her mothers’ untimely death.

I couldn’t live with it. Knowing Marion was dying, and knowing it wasn’t right, I took my brother aside and told him to let her come stay with me for a few months. To see if she could heal, and get back to where she was prior to her fall. Knowing this would be a sacrifice on my part, he agreed to it. So the other day he removed her from the nursing home, packed her stuff and brought her to my place…it was an interesting ride for them. She was able to tolerate sitting up, in spite of her hip. THAT told me she was definately not on her death bed.

Marion’s been with me for two days now. So far, so good. We have a nice reclining wheelchair for her to use, and she loves an old recliner I have. She’s feeding herself once again; she hasn’t had any episodes of incontinence. She’s been outside in the snow selecting pine branches for wreaths; and tied ribbons for them. Tuesday she was read her last rights. This morning she’s asking for fried eggs and bacon at the local diner- I brought her downtown for breakfast.

Like the little babies in the orphanages, Marion is coming back to life, from the brink. Some people told me to leave well enough alone. That Marion’s time had indeed come. That God was calling her. I don’t do religion, but God did yell at me many times during this past week. He told me to keep advocating for this woman, who had been abandoned by just about everyone. I lost endless hours of sleep and felt great pain knowing another human being was being systematically put to death by the very people who are supposed to keep her alive and care for her.

Time will tell. She could die tomorrow. Or next week…or in two to three yrs…or in ten yrs…no matter what though, she’s alive and thriving right now. It never ceases to amaze me what a little love and attention will do for the human spirit; even the most frail and demented or brain damaged.

I got ill after reading this.

IT WAS clear what the woman wanted. She was pregnant, and distressed to the point of being suicidal. She had learned that her baby would be born with dwarfism. She pleaded with the doctors at the Royal Women’s Hospital to terminate the pregnancy.

Lachlan de Crespigny and a handful of other doctors wanted to help her. So, on a Thursday afternoon in February 2000, they did as she asked. The role that Associate Professor de Crespigny played — injecting potassium chloride into the foetus’s heart — took only a minute or two. But almost eight years on, a day can’t go by without him reliving the ugly events that followed.

The woman was 32 weeks pregnant; that’s 8 weeks short of full term.

“It was lifesaving,” he says now of the procedure that he insists he had a moral obligation to perform. “If we didn’t do it and the woman died we would have potentially been charged with manslaughter and gone to jail. So in a legal sense, you could argue that we were compelled to offer it.”

Oh puleeze. Gimme some more totally untrue excuses here. You know what? When a person indicates they are suicidal to their doctor, often the doctor will evaluate how serious the ideation really is. If a doctor decides the threat poses a real and imminent danger to the person, the MD can refer the situation to authorities. Who will place the person into some sort of mental heath facility. I am very much against forced incarcerations, but when the life of a pregnant woman is at risk, I do support them. At least until after the baby is born.

I could care less about the Mother, sorry to say. If she wishes to end her life, so be it. Her choice, not mine nor the governments. The life of the unborn child though, isn’t up for grabs in these situations.

The doctors in this case are WAY OFF base; this happened in Australia where things are a little different than the US. I’ve said it before and will say it again: Not all first world nations are equal. No where is this more evident than in articles like this.

I have seen children who live with half to one quarter of a brain; I have held babies who were born without brainstems; I have worked with those whose brains deteriorate rapidly and they age and die before they’re three yrs. old. I’ve worked with kids with the most severe and profound disabilities one can imagine and not imagine.

I have a few friends who are dwarfs. They’re great people, just like you. And me. And every other normal average person.

It sickens me to know a group of doctors performed a late stage abortion on a woman who was too fucking selfish to give birth to a child who didn’t meet HER idea of perfect. To end a pregnancy in it’s 32nd week, based upon the fact the child will be born a dwarf, is criminal. Just criminal.

Dwarfs are not developmentally disabled; they don’t have mental health issues; they’re just like me and you forcrisesakes. They just happen to be little. WTF. They may be little, but their minds and hearts and souls are as big as anyone else’s. They grow up to learn and love and give and take just like the rest of us. They have dreams and aspirations and goals; they laugh and cry and dance…they fall in love and get married and they have their own kids who often are not afflicted with this genetic issue.

Perfection comes in all shapes and sizes. Human life is perfect. Until people except this, we will see stories like this repeat itself.
My heart bleeds and is broken over the life of this child so selfishly taken away, at the direction of it’s own mother.

I remember him. Well. That picture that caught my eye and my heart- the strong young Marine smoking a cigarette after seeing some action. I called him my hero and plastered his picture at AndRightlySo… He was and he still is MY HERO; he’s not doing so great these days. His story is HERE and HERE.

Blog sister Kat offers some inspiration for Blake, and others experiencing a similar fate.

The Warriors Psalm

He shall cover you with His feathers,
And under His wings you shall take refuge;
His truth shall be your shield and buckler.
You shall not be afraid of the terror by night,
Nor of the arrow that flies by day,
Nor of the pestilence that walks in darkness,
Nor of the destruction that lays waste at noonday.
A thousand may fall at your side,
And ten thousand at your right hand;
But it shall not come near you.

Semper Fi Blake Miller

Go back through your life…go back to your earliest memories, good and/or bad. Most likely, these memories are full of growing up at home, with your parents and siblings. For most of us, our parents were the center of our lives for upwards of 18 years and for many of us, more than that.

Our parents made many sacrifices on our behalf. Our fathers worked endless hours and some traveled to far off places as part of a career; our mothers may have worked but it seems they were always there for us. We derived a huge sense of comfort from our Mom and from that warm and welcome place we called HOME. Maybe you lived in a house and had a back yard with dogs and lawn chairs and a pool. Perhaps you grew up in a city, living in an apartment with few “amenities” as so many like to call those unneeded perks. Either way, home was where most of us wanted and needed to be. Our families were the center of our universe.

Now try to imagine your parents shipping you off to a facility of sorts, a year round boarding school or whatever. The reason for this was made perfectly clear: You were a burden to your parents and their lifestyle. You were not important enough, and respected enough to have the privilege to stay at HOME. You were sent off not to get a good education (although that might be listed as a benefit). The day to day tasks of raising YOU were just too much of an inconvenience for your folks.

Since when did responsibility become a burden you ask?

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Last week some may have read articles about Justice Sandra Day O’Connor’s husband- who is in love with another woman. He has Alzheimer’s Disease and this isn’t a rare occurrence.

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