Sunday, July 8, 2007

Quality of Life


A study in one of the recent issues of Pediatrics states the criteria used when defining the 'quality of life':


"The arguments that most frequently were used to conclude that quality of life was deemed poor were predicted suffering and predicted inability of verbal and nonverbal communication."


After discussing the topic of 'quality of life' on one of my groups I realized that it is far from cut and dry in the medical world. A few people had shared their ideas and I am hoping they will share them here too.


When parents are faced with making end of life decisions, they base it on quality of life. In order to do this, you have to have some idea of what that means to you.


In order for the doctors to advise parents, they too must have an idea of what their definition is to the quality of life question.


Defining 'quality of life' is not uniform. Try searching "quality of life definition". You will get answers that are across the board.


So, how do we begin to define it? Is the answer a personal one? And, if it is a personal one, then how does a doctor counsel his/her patients/parents while keeping his/her own definition out of the equation? Is that even possible?

46 comments:

Chris and Vic said...

PE, I'm guessing you will end up with a LOOOOnnnngg list of factors; and that the final definition will be personalized (as it should be), based on case-by-case. In other words, QOL is a moving target. Impossible to be nailed down, made absolute or even concrete, in many cases. Based on spiritual convictions, perhaps.

I have had a recent epiphany re QOL, and that is this: heretofore, I had thought of QOL based on an individual's abilities/disabilities, or on suffering, as the Pediatrics study relates. Recently, though, I see QOL depends a great deal upon "surroundings" and upon others. If a person with disabilities has a great family or support system to help him/her get her/his needs met, that is an index of QOL, and it is HUGE. If an elder has a great assisted living situation (or rehab or nursing home), their QOL will be high(er) despite chronic health conditions related to aging or dementia.

Recently, I met a group of about 8 women and 2 caregivers, presumably from a group home. They were shopping. They were not having a good time, and in fact many of the 8 looked lost and out-of-place. They had many needs, to understand the social situation they were in; and to curb loud talk, interrupting, whining, not waiting their turn, etc. In other words, they needed heavy coaching to socialize them (further) in that situation. There were not enough caregivers to meet those high needs for teaching/coaching. Additionally, the young women were not well-groomed, with particularly bad dental issues, making smiling/talking (impt elements of socialization) difficult.

Compare them to a young woman with severe spastic quad CP, the daughter of a colleague. She has 2 jobs, one voluntary, as a wayfinder in a medical complex, with 3 different buildings and elevators to 4 or 5 floors in each building: untold opportunities for social interaction. Her 2nd job, soap-making, provides her a small income. She lives with her mom and step-father. She gets a massage and a therapy session every week related to her spasticity. Her mom and step dad have bought a duplex, where one side will be designed for the daughter and her caregiver/personal assistant, and the other side will be for her mom and step-dad to stay closely involved with her life/needs.

In the first example, the young women have less severe medical issues---all were ambulatory and verbal---though they have moderate to severe cognitive and behavioral issues. In the 2nd example, the young woman has severe physical/medical/mobility issues--but hers is the higher quality of life. It has to do with her surroundings and with people who are able to give her one-on-one.

So, to distill: support system, supportive living situation may neutralize some severe disability issues.

I would have said that "living independently" would have been one of my criteria (my own son will NOT), but as in the above example, I think that a support system and a supportive environment may compensate to a degree.

One thing that we have no control of is the "acceptance" factor, when we go out in public for example. Avoidance, like shit, happens. My son's odd behaviors are off-putting, some situations being worse than others. I KNOW my duty, to provide that one-on-one constant coaching, to help him become more and more socialized and conquer his off-putting behaviors.
Chris and Vic

Laura said...

wow! what a question to ponder when i should be sleepin g.
seriously, i can think of one or two docs who definitely put their own personal stuff/beliefs/values/morals into the equation. it's hard for me to judge because mine are pretty strong. i try, really try not to put mine in the equation but if a parent asks me what would i do i just might tell them and it isn't always the answer they want to hear.
ftr one of those docs i am thinking of would have changed the eventual outcome of my little man if he had his way. thank goodness he didn't.
i do know that my perception of quality of life is not the same as yours or another person's. i recall one patient of mine with a "tragic" outcome (my opinion) but years later i had the opportunity to see the life he lived and i realized my quality is another's garbage. this "tragic" child had lived the most amazing life knowing and experiencing things i can only imagine.
i guess i have no answers in my sleep deprived state. perhaps i need to get to bed so i can work again later tonight with the wee ones.

terri w/2 said...

For me, quality of life issues are closely linked with pain and burden. How much pain is too much? QOL is highly individual, as Chris said. QOL cannot simply be geared toward the person, in this care the extremely preterm infant, but also the family - what happens when a 25 weeker, as in our case has a massive bilateral grade IV IVH? All indications point toward an extremely poor outcome, filled with pain in the NICU period as well as (most likely) for a lifetime. The entire family unit is extremely affected, as the parents and siblings must meet the demands of this one family member. The resources, time, care, economics of the family are severely affected and directed toward this one member - they for the most part, "burdened."

I like the Catholic directives regarding end-of-life decisions as well as medical cares that are deemed ordinary vs extraordinary. Neonatal for our micro preemies would be considered extraordinary btw, and therefore the choice can be made (according to the Catholic Church) to forego tx. (The Baby Doe Laws are much more extreme than the Catholic stance and for the most part prevent the parents from making that decision, which in fact is what happened in our situation.) The Catholic directives also discuss "burdensome" treatment - treatment that involves extraordinary pain, extraordinary cost to the patient, family, and has the strong potential to continue to be burdensome, painful, probably a good definition of a poor quality of life.

Quality of life for me is very much linked to pain and burden. One of my twins I would say has an exceptionally poor quality of life d/t continued medical procedures, surgeries, multiple, severe disabilities and pain from daily cares 21 years later stemming from her prematurity. Interestingly, I asked my other daughter today (former 26 weeker) who has mild/mod CP, NLD and Aspergers what she thinks about the quality of her life. She thinks if she had more $ her QOL would be better, as she could get more/better tx for her issues.

Anonymous said...

How can you say a baby's quality of life depends on the burden that baby is to you? Wouldn't the burden affect YOUR quality of life?

I mean this sincerely - is there anyway you can see a therapist? Every time I read one of your posts I am struck with how overwhelmed and depressed you seem to feel.

Clark Bartram said...

C & V,

Your thoughts on how "surroundings" effect QOL are of course on the money. Better support and resources generally lead to improved outcomes. But do you really think that a factor such as that should be entered into the equation when approached with an ill micropremie. If a doctor is faced with two neonates, one born to a poor single young mother with no family and one born to a couple of trust fund babies, but who are otherwise clinically and historically the same, should that doctor really be more justified in declaring care of the poor mother's child a futile endeavor? Perhaps the young mother is about the win the lottery. Perhaps the rich family will lock the kid in the basement with a bucket of fish heads during parties. A very accurate crystal ball would be necessary to include surroundings in the decision making process.

Anonymous,

I know of far too many shaken babies, now blind and severely handicapped, who had their quality of life effected by the burden they placed on parents who were ill prepared to handle the responsibility of raising a child. Furthermore, if a parent is depressed and unattached to their disabled child they are less likely to provide for them the intervention that they need. Quality of life for the child and the caregiver is inexorably linked and correlates positively. And sincerely or not, you come off like a jackass when you make comments like that so, and I mean this sincerely, keep them to yourself.

Helen Harrison said...

To anonymous 9:22,

For many centuries, the issue of caretaker burden has been considered part and parcel of patient quality of life considerations in Roman Catholic theology and elsewhere.

Speaking as a parent of a suffering disabled prematurely born son (now 31 years old), I can tell you that my own pain is inextricably intertwined with my son's pain. When he is in pain, I hurt with him. When I am unable to care for him due to extreme fatigue or my own human physical limitations, he suffers as a result. My husband and I have others to help us, but they are rarely equal to the tasks themselves either.

Even in the intensive care unit, where we just spent several days there is only so much that can reasonably be done.

It isn't even a question of overburdened caregivers becoming abusive, as Dr. Bartram suggested, but of painful, chronic problems that have no solution and tax the strength, abilities, medical knowledge of us all.

Are you really saying that anyone who acknowledges these obvious realities is in need of therapy? What kind of therapy? To what purpose?

Chris and Vic said...

Vic's ped had this definition of QOL: ability to experience the full range of human emotions. Would anybody like to comment?


A recent article in Pediatrics addressed two quality of life elements---we have mentioned suffering, but what of the ability to communicate? The opposite being blind/deafness or being in a persistent vegetative state? (a la Terri Schiavo perhaps?)

As far as a doctor's input, we had the experience with Vic that his neurosurgeon wanted to "give up" on him about the time of his 6th or 7th shunt revision in the first year of his life . . . Toward the end of his first year, there were 2 shunt surgeries in the middle of the night each weekend, several weekends in a row. I think that when you see the same problem cropping up again and again and it cannot be resolved; and/or you see deteriorating conditions (the very young and the very old). . . you may say "There is no quality of life here". Any comments?

Dr. C., here in my state, you cannot discontinue life support unless a patient is in a persistent vegetative state. No newborn qualifies---there has been insufficient time elapsed since birth to qualify the infant for "persistent". That standard is a legal standard---not necessarily an ethical standard. Parents and docs may not agree at all about end-of-life decisions based on this standard. I hope that docs and parents come to joint decisions based on the doc's oath, Above All, Do No Harm, and upon the parents' convictions and values.

One father, horrified at the aggressive resuscitation of his son in the delivery room, said "Doc, if he is going to be messed up, you can stop right now."

Chris and Vic

Helen Harrison said...

When critically ill adults are asked about their treatment preferences, they, too, do not want to accept treatments that will leave them "messed up." Most prefer death to mental impairment.

Fried et al. Prospective study of health status preferences and changes in preferences over time in older adults. _Archives of Internal Medicine_2006;166:890-895.

future of hope said...

On a personal level, I have come to believe that quality of life can be greatly improved by acceptance. I spent the better part of my Son's first 7 years pushing him, molding him, trying to "fit" him into societal norms. The fact of the matter is though - IT AIN'T GONNA HAPPEN. Once I came to that realization, I understood that by trying to hold him up to "my" standards of success I was holding him back, and I was not allowing myself to see the wonderful life that was right in front of me.

I don't think quality of life should be considered simply as a comparison of how far from "perfect" a person is. A mentally impaired child does not have a previous frame of reference to compare his cognition to - nothing has been "taken away" , he simply is what he is. In this case, the parent's ability to accept and go on is what is in question, not the child's. The same can be said for other types of impairment. A child's quality of life is directly linked to parental attitude and outlook. Can we get past what was "supposed" to be, and find peace in what is? Or are we forever going to feel burdened?

terri w/2 said...

Future of Hope said: "In this case, the parent's ability to accept and go on is what is in question, not the child's. The same can be said for other types of impairment. A child's quality of life is directly linked to parental attitude and outlook."

Acceptance is great and all - but parental acceptance does not take away a child's physical, etc. pain. When there is *that* component to the child's life, it is a whole NOTHER story. What parent who deeply cares for and loves their child would NOT be affected by seeing their child endure medical, etc suffering over and over and over?

QOL for me is related to freedom from chronic and acute pain. However, QOL regarding disabilities should also be taken into consideration on a family's individual basis.

Chris and Vic said...

Future of Hope wrote some profundities . . .

There was a book review in the Sunday New York Times about engineering perfection: http://www.nytimes.com/2007/07/08/books/review/Saletan.html?_r=1&oref=slogin


I myself walk a fine line between acceptance of what-is and pushing ahead in order to improve. Ebb and flow.

I think we all have a longing or even a biological imperative to fit in, to allow ourselves to adopt enough social mores to be accepted in society. If this doesn't happen, it can be a very lonely life.

On the other hand, and on-balance, it is so peaceful and Zen to be as accepting as you say, Future of Hope.
Chris and Vic

Helen Harrison said...

To Future of Hope:

By the time Ed was six or seven, we had a pretty good idea of what the future held for him developmentally. "Accepting" this was much easier than the struggling to mold him via therapies (which didn't work anyway).

It was an enormous relief simply to let Ed do what he was going to do and be what he was going to be. In fact, it is easier, in many ways, that Ed is as retarded as he is in that it keeps him from suffering from the knowledge that he is "different."

However...the pain and medical issues were, and continue to be, overwhelming!

And here's where the cognitive deficits complicate the picture. He can't understand what is happening to him...it all seems like random torture, and he can't cooperate with medical treatments.

He is 5'6" and weighs 165 lbs. When he wants to resist, it is very hard to stop him.

Procedures like inserting an IV or a PICC line or an NG tube can become total nightmares. Keeping these tubes in place is hard too!

This affects everyone's quality of life, including that of the staff at UCSF.

For us, QOL is about the physical suffering and the cognitive issues that worsen it for Ed.

The Preemie Experiment said...

I finally have a moment to chime in.

I haven't completely been able to define QOL. My idea keeps changing as I age and am exposed to all of the varying experiences that the world has to offer.

But, factors that I include in my opinion on QOL are... long term pain, inability to interact in the world, caregiver support and finacial ability (if anyone actually thinks there is government help out there-show me where it is).

My interpretation of QOL does change but those factors are always there.

My step-grandmother is 94 years old and in a nursing home. She is miserable. About 2 years ago she landed in the hospital, unable to feed herself and in and out of what looked like a comatosed state. During my visit with her she was briefly awake. She begged me to make it all stop. She no longer wanted to live and I did not blame her. The nurses pulled me aside and said they felt prolonging her life was cruel. I agreed. My step father agreed but unfortunately his brother has power of attorney. He stepped in a had them place a feeding tube. She recovered but can no longer eat solid foods. She sits in her wheel chair, in the nursing home hallway. She is miserable. That is no quality of life.

future of hope said...
"On a personal level, I have come to believe that quality of life can be greatly improved by acceptance."

I agree with your statement, but only in certain circumstances. When a child has ADD or learning difficulties then acceptance can bring peace to the child and the house. But, when a child/person has chronic pain, all the acceptance in the world will not help.

With my own life and my own child, I do still feel that there is hope. But, I do feel that her quality of life is in danger though. If I was to give up trying to help her with her mental health issues, I fear what will become of her as an adult.

With regards to myself... my entire family knows that I will haunt them from my grave if they ever keep me alive in conditions that are cruel.

future of hope said...

In looking back over my original comment, I realize that I painted a way too peaceful picture of acceptance. I think that I was knee-jerk countering the idea of the disabled child as a "burden". To me acceptance does not equal giving up. It does not mean that I don't face my son's issues, and deal with them each in turn. I guess it simply means that I am no longer consumed by them. I also respectfully disagree that acceptance cannot play a part in dealing with chronic pain and medical issues. My son has spastic quad CP. Like it or not, pain is a part of his life. Together we are learning to manage it, and alleviate it as much as possible. He hates his daily stretches with a passion, and there is no way around it, they hurt. Botox every 4 months or so - Have you ever watched your child turned into a human pincushion? Had to hold him down while he begs and pleads? That has a way of tearing at your very soul. But, without these interventions there would be more pain, there would be muscle contractures, spasms, etc. We use massage, whirlpool baths, and medicine as necessary to control the pain they bring. We accept that these things must be a part of his life. But they don't define his life.

Quality of life is a very tricky thing to define. My 85 year old Grandmother has Alzheimers. The person that she was would be devastated by the person that she has become. BUT, the person that she is now is enjoying her life. She lives for her daily bingo games, the little trinkets that they have for prizes she treasures. She will sit for hours watching her flowers grow ( her words, not mine). She likes wandering the halls of her assisted living and "helping all the little old ladies". She is content in her current life, although it is no longer an independent, productive one. Does she have a decent Quality of Life? I guess it would depend on when she was asked....

Helen Harrrison said...

To Future of Hope:

Yes, I've watched my son turned into a human pincushion, and worse, for 31 years.

I don't know if he would choose this life if he had the choice, but I know I wouldn't.

I've also watched my mother die slowly and painfully at age 86 -- slowly because too many well-meaning people tried to intervene against her fervently expressed wishes. Because I was caring for my son 3,000 miles away, I was unable to be with her to see that her wishes were honored during her medical crises.

Her death was peaceful, the years that led to it, thanks to unwanted interventions, were dreadful for her.

I agree with Stacy. If someone tries to do this to me, I will haunt them, big time!

Anonymous said...

One father, horrified at the aggressive resuscitation of his son in the delivery room, said "Doc, if he is going to be messed up, you can stop right now."

Dear Chris,

My longtime cyber buddies know that my daughter Kate was born at a marquee Los Angeles hospital more known for it's celebrity childbirths than the NICU but its location in Beverly Hills area of LA means that a large percentage of its non-celebrity clientele are none the less highly educated parents "of means". When Katie was on the vent in the NICU and having a precarious course (despite her rather late GA and good birthweight) she was in the room with all the then "micro" preemies who were most 26 to 28 weekers. There were many moments of that time that are forever etched in my mind - not the least of which was the tortured look on Kate's face when they sliced open her chest to relieve a huge pneumo with no pain medication (pavulon only) but anywho ... later that night when I was trying very hard to keep myself together (there was a fairly strict "no crying" policy) the Orthodox Jewish parents of one of the sicker(despite the fact that he was then several weeks old) babies in the unit arrived with their Rabbi to perform a ritual that is performed by orthodoxed parents where they symbolically "buy their children" back from the Rabbi. Shortly after they arrived and some prayers were said, the baby just ...crashed. It was NICU pandemonium nurses, doctors, RT's of every strip and kind jumped all over this tiny infant - at one point in the most anguished voice I had ever heard the Dad *pleaded* with the staff to stop. He was ignored at first, and as his cries became louder one of the Neo's shouted at them to leave at once that he had no input or choice in the matter of the "rescue" activities ... His wife was standing off to the side and you could see that she had simply "checked out" mentally and emotionally - she was purely shattered. The Rabbi, tenderly coaxed the family outside. The staff then ordered the rest of us parents out too. We all wound up in the parent room together, and this Dad was experiencing a toxic level of stress and anger. He begged the Rabbi to intervene - to make the Neo's understand that what was happening was against their faith etc..etc ... At that point the conversation switched to Hebrew so I didn't understand what the Rabbi said to calm the man. But he did calm. Two days later, their son mercifully did die with his parents and their Rabbi there. I saw quite a few neonatal deaths that week - and I don't think I saw another one in which the parents looked more peaceful AFTER the death than before. I talked at length with my favorite RT about the whole thing when he came to turn Kate's vent settings down - he was deeply disturbed and said - yep, the genie is out of the bottle and there's no damn easy way to get him to go back ...this is a total disaster gaining speed and momentum - an opinion I later found out was shared by about 20 percent of the NICU nursing staff.

Warmly,
sheila

terri w/2 said...

A sad day at work today - I am a new hire at a home nursing agency. A call came in yesterday, we're admitting to the agency a former 28 weeker, grade IV IVH, hydrocephalus, etc. The baby is now 8 months old and neurology report says "significantly delayed" in all areas. Last week it was noticed and dx that the baby is having infantile spasms. Mom is 19 and overwhelmed. .already. They asked me to go in as RN casemanager for this baby, and tomorrow is the day. I keep thinking why, WHY are these massive brain bleeds STILL happening all of these years after my gals were born? And why isn't more being done to support families that are facing these horrific outcomes? Quality of life issues big time.

Helen Harrison said...

The genie is out of the bottle, the train has left the station... Whatever metaphor you choose the result is overwheming... the train is being derailed...the genie is out of control...

We had to wait nearly three days with Edward in the hospital, almost comatose and NPO, before the neurosurgeon could get an operating room... I suspect this delay strongly contributed to the subsequent ileus,SBO, lung collapse (secondary to the ileus-SBO), his need for 2 1/2 days in the ICU, a PICC line and an NG tube, as well as as a two week stay in the hospital for a shunt replacement -- the 16th prematurity-related surgical marathon he has endured in 31 years (and that's not so many by preemie standards).

And we are still not out of the woods, to use yet another metaphor.

Ed's abdominal incision is infected, he has finished the last of the Keflex, and we have been trying for two days to get through to the neurosurgeon...or *anyone* in his office who can get Edward more/different antibiotics!

We have left numerous messages and no one seems to be available to act or even to return our calls.

The visiting nurse who is watching over Ed's incisions also tried to get through (on the special extension reserved for MDs)...no luck!

It is not that the neuros are slackers, they are just overwhelmed as, apparently, is the entire hospital at UCSF and every other one we've visited in recent memory... and yet the NICU keeps pushing back the margins of viability. Our hospitals, schools, and families are cearly suffering... not to mention the unfortunate children themselves!

Anonymous said...

gosh Helen, I was just thinking of you guys yesterday - I let Kate and two of her girlfriends in to Disneyland on my employee pass and on the way down, I followed a car that had a UC Berkeley sticker on it which made me think of the lovely dinner we shared at Disneyland with you guys. It also made me realize I hadn't heard an update. Are you scared that what he's got is some kind of nosocomial superbug ? bleh ! It's too bad that his other issues would prevent something like hyperbaric wound management - one of my dearest friends (an ICU nurse by profession) worked at a wound management unit of another hospital doing hyperbaric medicine 'dives' she shared a few really remarkable stories - but it wouldn't be good for Edward because of the confined space, though he wouldn't have to be alone they frequently dive a nurse with the patient. I hope they can knock Edwards cootie out with a course of some different bug juice (as my Ped refers to ABX).

You are in my thoughts all the time.

Hugs,
sheila

Helen Harrison said...

Thanks so much Sheila!

No sooner had I complained online, than a nurse from the Neuro's office got back to me. The Neuro is currently "on a plane," but will be consulted upon landing (sometime in the next 24 hours). Meanwhile, we are getting another day of Keflex for whatever that's worth.

I'm really hoping this isn't MRSA or something else that can't be easily knocked out. Above all I hope it hasn't already colonized the shunt, which will mean yet another surgical marathon (even worse than the last one!)

Poor Ed! With all his scars and incisions (some done without benefit of anesthesia or other painkillers), he looks like he's been run over by a truck! I think he feels that way today as well. So do I.

Anonymous said...

I am not sure why I am posting here again, as it always seems I get attacked, no matter what I say. But, here goes.

The therapy comment truly was meant to be helpful. Helen asked if everyone who feels overwhelmed and depressed should get therapy and to what end. My answer would be: If you feel overwhelmed, burdened, depressed....why wouldn't you get therapy? And to what end? To feel better, of course. After the birth of my first baby, I took an anti depressant and saw a therapist and found it extremely helpful. It really is possible to live a peaceful life in the midst of difficult circumstances.

Helen Harrison said...

To anonymous:

What "therapy" do you suggest for my son when he is in severe pain from shunt malfunction? And what therapy do you recommend when a malfunctioning medical system cannot give him timely or curative care?

What "therapies" do you think make parents "feel better" about watching their children suffer?

Anonymous said...

Wow. Attacked again. What a surprise. You are so very accepting of others' points of view.

Are you really saying seeing a therapist can't be helpful with the emotional challenges we face as parents of preemies?

Helen Harrison said...

To anonymous:

I hope you will discuss with your therapist why you feel *you* are the one attacked when it was *you* who began this conversation with an uncalled-for, anonymous, personal attack on "Terri w/2," that made you, in Dr. Bartram's words,"come across like a jackass"?

I think you might also consider recalibrating your antidepressant dosage and/or staying away from discussions that so seriously challenge your equilibrium.

Clark Bartram said...

Anonymous,

I'll buy that you sincerely just were looking out for these women. It is difficult to interpret without tone of voice and facial expressions, etc, etc. Perhaps a more productive way of broaching the situation might have been to phrase in as a general question as opposed to singling someone out. You could have asked whether anyone involved in the discussion had had any success coping with the difficulties of raising a disabled ex-premie with the help of a counselor or other mental health professional or just what do others think about such an endeavor.

Anonymous said...

Well, I must chime in, chuckle and ask, "When you have a severely disabled child that requires constant care, who has TIME to go to a counselor?"
I spend whatever free time I have resting or trying to sleep. There are some weeks when I get maybe three or four hours sleep a night, IF I am lucky. This week, I actually feel rested with 5 to 6 hours a night. I cannot remember WHEN I got 8 or 9 hours, which is what my body requires.
Heck, we could relegate him to a nursing home and get sleep and have a somewhat normal life. It may come to that someday, but we prefer to care for him despite the toll it takes, and even with part-time help and part-time school, it DOES take a toll.
Our schedule this month includes: 4-hour round trip yesterday to the big medical center. My husband made a six-hour round trip the previous week for a doctor's appt. with his father. In two weeks, his dad goes back for a major medical procedure. Next week, we go to the neurologist, a two-hour round trip. Two days later, another four-hour round trip back to the major medical center for x-rays. Next month, a two-day hospital stay for tests is set up. Like I said, by the time we take off work for all of this, who has TIME for counseling? Oh, and I also work part-time from home. Between all of this, I have case managers for his health department home health agency coming by without calling, like yesterday when I was trying to sleep, and there's a new rule that they have to check your bathroom to be sure the caregiver is cleaning the bathtub properly. So. who really has time for mental health care? Do counselors make house calls?

Helen Harrison said...

I'm guessing that "anonymous 8:22" and "anonymous 6:47" are *not* the same person, but to anon 8:22:

Not only is there no time for "counseling," but also very little time to attend to presssing parental medical issues.

Wishing us all some badly needed sleep!

The Preemie Experiment said...

Anonymous wrote: "I mean this sincerely - is there anyway you can see a therapist? Every time I read one of your posts I am struck with how overwhelmed and depressed you seem to feel."

Dear Anonymous,

In all honesty, the tone to your comment takes away from the reader possibly feeling that you are sincere.

Discussing the mental health of parents of preemies with special needs is an important topic. But when it's mentioned with a snarky tone, in direct response to a readers comment on the current topic, it can easily be misunderstood. I, myself, was completely put off by your tone.

I encourage you to continue to post and express yourself. But, please do so in a caring manner. We are all here to learn.

Anonymous said...

Acceptance. I could write a book about that subject, and someday I might.
Long ago, we accepted that one of our preemie sons would never live independently and would be severely disabled. The problem is that acceptance isn't just a one-time thing, then everything is all better.
Accepting the inevitable prepares a person to go on to the next step and have a kind of peace about the outcome.
However, with severely disabled preemies, acceptance is a many-pronged process. First, we were told he had a grade 4 IVH. That pretty much secured his cognitive ability to low. Then, we were told he had hypertonia. CP was never mentioned. Okay, Accepted!
Then we found out he had hydrocephalus and might need a shunt. Then, he had a punctured intestine and would die without surgery...gave him a 5 percent chance of survival. We prepared to lose him. Accepted! But he came through just fine. Then, he had kidney failure. Then, he needed a shunt, which had to be postponed due to the abdominal surgery and temporary colostomy. Then he kept having shunt infections. Then, he got a shunt. He improved. Then, he had bad reflux and had to be revived and reintubated. We were warned that he probably would not make it after all. Accepted! Then, we were told he was blind due to ROP. Unaccepted! That was the worst of all! Then, he came home and went through several ROP surgeries, none of which lasted. But, he gained weight and grew. There was hope after all. Eventually, we were told he would never walk. Accepted! Perhaps he would talk. He never really did. Accepted! At least he didn't have seizures! Then, he started having seizures. Accepted!
Throughout all this, he also had chronic ear infections and several sets of ear tubes. He must not lose his hearing! That was the only thing he had left, and that would be unacceptable.
He progressed during preschool, both physically and mentally. Then, he had a shunt malfunction which set him way back. Then, he had orthopedic surgery which set him back forever, and he never regained the weight he lost or came close to normal size again. Then, he had another shunt malfunction, another major setback. But the ortho docs said they didn't think he would ever have severe scoliosis so not to worry about that!
Now, he has severe scoliosis. Accepted! He also has severe reflux of which he nearly died from last year and very severe CP.
When the nurse drew five vials of his blood yesterday, three people held him, and he still was able to bite his hand almost to bits and nearly knock the vials from the nurse's hand.
Still, he has a charming personality and is a handsome young man. But every time we turn around, we are learning to accept more and more adverse diagnoses, and he endures more and more pain and procedures that he doesn't understand. So, acceptance never really ends.

The Preemie Experiment said...

I think something that everyone needs to understand is that this blog is not intended to make people feel good at all times.

It's not a blog full of fluff.

There are plenty of blogs out there that highlight the positives of having a child but very few are devoted to an honest account of daily life with a preemie.

To be clear... being honest about daily struggles does NOT mean that we do not have happiness in our lives.

It does NOT mean that we love our child any less. To the opposite, we are the parents who are constantly on line searching for new treatments and funding options. We are searching for other parents who understand. We are out there, on our own dime, trying to show the other side to prematurity, in hopes that some one will be able to improve the lives of future preemies.

We never give up on our children.

If hearing about our lives seems depressing, just be glad you are not in our shoes. But, just because it's hard for you to hear, don't assume that we are all clinically depressed.

Anonymous said...

Helen, dear, no need to get ugly. Especially since I never "attacked" anyone. You, and several others apparently, misinterpreted my tone. When I went on to explain what I meant and tried to answer the questions you posed, you get nasty? Why such hostility to the issue of therapy?

And by the way, I appreciate your concern for my mental health. (:

Anonymous said...

Stacy,

I just read your comments, posted while I was composing my last one. Maybe you could do an entry about preemie parents' mental health? What we go through? How we deal with it? Experiences we've had with therapists? Etc...

Helen Harrison said...

To anonymous 8:56:

Did you, or did you not, write the following in response to Terri w/2?

"Anonymous said...
How can you say a baby's quality of life depends on the burden that baby is to you? Wouldn't the burden affect YOUR quality of life?

I mean this sincerely - is there anyway you can see a therapist? Every time I read one of your posts I am struck with how overwhelmed and depressed you seem to feel.

July 9, 2007 9:22 AM"

Anonymous said...

Here's a quality of life scenario: Where is there a public restroom where you can change an adult who wears diapers? Restrooms like this don't even exist in doctors' offices or hospitals as far as I know, much less any other public place, not even shopping malls. At the doctor's office, your best hope is to change them on the examining table. The lack of such a place severely limits where these adults and their families/caregivers can go, which even includes a doctor's appointment! Pretty much relegates them to being homebodies.

Anonymous said...

By the way, in the above post, I am talking about adults who are wheelchair-bound and cannot change themselves but who otherwise are healthy enough and would enjoy getting out of the house.

Chris and Vic said...

Of course "caregiver burden" is a part of QOL. And I don't perceive that feeling the burden, acknowledging it, and even complaining about it (telling the truth about it, not making it seem all rosy and spiritually uplifting) is a problem.

I'm wondering how many have any type of respite care? Or, how do you manage your work lives when you have a child with special needs, or a multiply disabled child?

Any other creative solutions?
Chris and Vic

terri w/2 said...

Interestingly, a number of years back, there was a report on caregiver stress in one of the family caregiver publications - "situational depression" was a huge commonality among caregivers. (No amount of therapy in the world is going to really benefit a situational depression problem. Drugs might help though!:) Of course, these caregivers were adults caring for parents with alzheimers, spouses with MS. .don't think they included parents of children with disabilities. (Rarely do these types of studies include parent caregivers). I would think that depression would be higher in parents of kids with disabilities, since there is no end in sight as with Alzheimers, parents of young children are more severely stressed financially, less support, other family members to care for, etc. etc.

I think what parents need are good LOOOONG breaks - vacations in the tropics for 2 week stretches a couple of times per year while the child is being cared for in a qualified nursing facility. Four hour stretches or 1/2 days a time or two a week doesn't cut it.

Speaking of breaks, that is another thing that bites the dust - no dinners out with spouses, family vacations, attendance at family weddings, (even funerals) - without a hell of alot of advance planning, if at all. Another QOL issue.

Helen Harrison said...

Studies of parent caregivers of children with CP and other serious disorders found genetic damage (the shredding of the telomeres that protect genetic material) in the parents that appears to be stress related. This damage is expected to take about a decade off the life expectancy of the parent.

terri w/2 said...

Helen! I completely forgot about that study! It came out about 2 years ago - I did "stress" as a topic for a microbiology class - we had to pick a disease, disorder or problem and discuss biologically how it impacted a person. This was the one I picked because that study had JUST come out. Yes, chronic stress does shorten telomeres and most definitely is associated with premature aging. And the study was conducted using mothers of kids with disabilities.

'Nother argument for that lengthy tropical vacation, weekly massages and some good drugs:) That should be a given when taking a micropreemie home form the NICU.

Helen Harrison said...

To anons 8:22 and 8:46:

The discussion moves on, but your words continue to resonate...

Try to stay strong, and keep posting.

My heart goes out to you,

Helen

Rambling Round said...
This comment has been removed by the author.
twinsx2 said...

Well, the "therapy" posts,for the most part, seem to be because we may be messing with others' coping mechanisms. Remember, we are special moms, we can handle it, God knew what he was doing when he gave US special needs kids, and so one. So, when we DARE to object or to impart a little reality, we are "ungrateful". I used to be a little more judgemental too but nothing like a housefull of special needs kids to make you tolerant.

But, you know what? I rather be less tolerant and have NT kids. Oh, darn, there I go again questioning my lot in life. refusing to make lemonade for my "guests".

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Anonymous said...

I've gone back 4 1/2 years after this exchange on QOL, to re-read what we've said, and to re-evaluate my own position--or not.

At this juncture, Vic is about to go on to High School, after 4 years in an excellent program in middle school. He is an honor student within his sp ed pgm. He has had 5-plus years in Tae Kwon Do. He has developed a seizure disorder.

At his IEP this past week, I was asked to state our goals for Vic.
I am unable to do so. If I am unable to visualize Vic in a post-high-school job, does that impact upon his QOL--theoretically, or actually?

After all, Freud said there are 2 things in life: love and work. If I cannot imagine nor prepare Vic for some manner of productive work, is his life anywhere near fulfilling? Does never-living-independently impact negatively on QOL?

Anyone with older preemies have any thoughts? Actually, I welcome all thoughts from anyone . . . not just parents of older preemies . . .

Thanks
Chris and Vic

ThePreemie Experiment said...

Chris, I just sent you an email but I'm not sure if I have the correct email address. If you haven't gotten it can you please send me your current email address to me.

Stacy