To PEG or not to PEG, that is the question:

Status
Not open for further replies.
When the time comes I will be getting a PEG and eventually a trach. This is a personal decision that each person has to make. I respect each person's decision. I have told my family and they are supportive. I have also told them that I reserve the right to change my mind.

What really aggravates me are people who are convinced that their way is the only way.
 
I am in the minority here. I have chosen to go o natural. When and if I can no longer swallow I will no longer eat. I lay my life in gods hands. No one leaves this life before his or her time. I will say originally I left it open to change my mind but so far no change. I respect all of you who choose to fight. I don't fear the end as much as I do the process of....

if you are going the starvation route it can take weeks of suffering to die. you need to get doctor to put you on IV morphine so you don't know what is going on. better still give you 400 mg in one go and you will never wake up again
 
I spoke to the ALS Association social worker and a hospice nurse and a hospice doctor and they all told me that I could be made comfortable if I chose to not get a PEG.
 
You can be made comfortable, Lobster. My question to you is this: Is the consideration of NOT getting it INTRINSIC or EXTRINSIC?

If it's not something inside you personally that just doesn't think your quality of life is worth it--then don't get it.

If it's EXTRINSIC--because of concerns with health care, caregivers, family support--then I say "GO FOR IT and get that PEG"

I don't live your life--but I certainly find you to be a VALUABLE person--even to me personally.

You have NO obligation to society to not take advantage of every medical treatment available to sustain you until a cure is found--if you choose NOT to PEG, please choose it for the RIGHT reasons.

If it's solely a matter of caregiver support--move to FL--I guarantee you--you'll have a caregiver that WILL give you all the care you need for the RIGHT reasons.
 
Last edited:
Lostin I sense a little hostility in your response. I realize exactly what I would be sighning on for in both scenarios.
To suggest I be euthanized because I don't agree with you seems a little extreme.
I apologize for my first post and the light heartedness of my " o natural" comment. I did not mean to make lite a serious decision. Lobster I am sure you will make the right choice for you.
 
If it's solely a matter of caregiver support--move to FL--I guarantee you--you'll have a caregiver that WILL give you all the care you need for the RIGHT reasons.

Do they screen for "the right stuff" at the border? I have two paid caregivers; one is very nice but very inexperienced, the other is sadistic but also reliable. The latter is waiting me out... she knows that soon enough I will be completely paralyzed and unable to communicate so begging her to Wash and feed me will be a thing of the past.

I don't know how I will pay them or supervise them as time goes on. I have income enough to pay but how to get to the bank? How to train them? What if they quit or Need an unscheduled day off? I don't know if anyone else who is on their own (lostin?) Has any tips.

Michael, I assumed losTin was warning about the possible suffering involved in starving to death. Maybe it is a miserable way to go, I don't know. see my post above about that. I just don't know...
 
Do they screen for "the right stuff" at the border? I have two paid caregivers; one is very nice but very inexperienced, the other is sadistic but also reliable. The latter is waiting me out... she knows that soon enough I will be completely paralyzed and unable to communicate so begging her to Wash and feed me will be a thing of the past.

I don't know how I will pay them or supervise them as time goes on. I have income enough to pay but how to get to the bank? How to train them? What if they quit or Need an unscheduled day off? I don't know if anyone else who is on their own (lostin?) Has any tips.

Michael, I assumed losTin was warning about the possible suffering involved in starving to death. Maybe it is a miserable way to go, I don't know. see my post above about that. I just don't know...


Nope, no checks at the border. But "inexperienced" can be taught--sadistic should be out the door!

That's my personal nightmare--especially after one stroke.

I meant that if you were in the Orlando area--I'd make SURE you had good caregivers--if I had to find and teach them myself. I've actually refunded course fees to people that I feel would be sh***y caregivers. Many of my students want to do home healthcare.

Another member had a great idea she PM'd me. Start a community for PALS somewhere! It was an excellent idea.

I'm seriously considering finding a house and turning it into a place for PALS only with 24/7 support. Assisted Living for PALS. I'm going to look into the legalities of such next week. Courtney, from ALSA said there are a LOT of PALS in central Florida. There needs to be a place for those that don't have family to help care for them.

There are some very good assisted living places--more like a 'home' than a nursing home. Nursing homes suck. The care is usually sub-standard at best.

I teach all my students warning signs to look for that should turn them away from facilities. I tell them that if more than a very few have bedsores to work elsewhere. (The are caused by sheer negligence the majority of the time)

I'll get off my soapbox--but I was serious in the offer--if you move here--I will find you a caregiver--even a live-in one if that's what you need.

Lostin probably faces a lot of issues other PALS wouldn't face by living in a country that doesn't have the best in healthcare. But, at least he has his two ladies that care for him.

In this area, there are so many people looking for work in this field.

No one should have to live in fear of having their help not show up or being mistreated by their caregiver.

It's just not right that people like you have to decide on personal life-extending things based on worrying about being well taken care of when full-time care is needed.

I'm sure there are more that lurk and don't post in similar situations.

My 'fix the world' personality won't let me not try to find a solution for them.
 
I will have the peg placed on the 13th...I am so full of life, I dont want to miss a thing that God has created to help me with this disease. But i absolutely respect the choice of each pals....and you can always change your mind later....I remember that when all I had was a footdrop I made out my living will stating that I wanted even a ventalator....but I have no idea what I will do until my breathing gets that bad. Grace is only given in the moment....I will wait til then.
 
It is a personal choice, but it is also a timing choice. If you wait to long and breathing gets to bad you will not be able to undergo the procedure to get the peg. It all is a pretty crappy set of choices we have to make, but make them we must. Life is still a good choice.
 
Oh man, fire the sadistic one! Do you have a program called "Copes" in your area...they supply caregivers for a certain amount of time each day and they supervise them. You do not want someone who does not have your best interest at heart caring for you!
 
I've kind of been avoiding reading this thread carefully enough to give a reply. This morning I finally did.

It seems like everyone agrees its a personal choice, and I completely agree.

Like Barry said, I think the decision is less abstract for those who's onset involves the bulbar region, than for someone who has already been dealing with perhaps an aggressive progression of limb onset, and possibly thinking there is no real upside to prolonging everything.

The danger with that, is if one changes one's mind later on, then the surgery may be too risky.

My progression has been slow. This made it hard for me to get on the PEG bandwagon for quite a while, despite having aspirated in the past. Even as far back as a year ago, my swallow studies showed test bolus making it under "the flap" at all thicknesses, and I was advised that it was pointless to use thickener. They felt whatever I found palatable would make it easier to consume what was needed, and for many people, thickeners are definitely not appetite enhancers! But, even with poor test results, I was able to maintain my weight, had no more chest infections, andI still felt like it was a decision I could continue to put off making indefinitely.

The thing is, in many ways my life is still very normal. However, I really dislike being thirsty all the time. I hate feeling like I'm engaging in Russian Roulette every time I take my vitamins. It has become too much of a daily hassle trying to consume enough, its taking up too much of my emotional energy - needlessly. Could anyone tell me it how unpleasant this would be, say, a year ago? No, of course not. Well, they told me, but I wasn't listening. I heard but did not believe.

Many of you may have read the thread I started which talked the importance of correct FVC measurement. Let me tell you what, for those minutes when we thought my breathing had gone down to the 40's, (and the clinic had already stated many times before that they would not give me a recommendation for the surgery if it fell lower than 50%) I about panicked! All along, from the beginning I'd counted on that safety net, and to have it yanked away with no warning? no "last call"? Not a good feeling. In fact, a very very bad feeling. Much easier to decide to have PEG removed than be denied one.

So, of course, it really is a personal choice. There is no disputing that. For PALS who have not started having problems eating and drinking, it may be hard to imagine how unpleasant it is to deal with on a daily basis. It is not fun.... frustrated that you can't button that button? Can't open that packet of sugar? Well, translate that into looking at that glass of water in front of you...
 
Hello all
Some of you may remember me. Most of you will not. I am going to relate to you what i am going thru now because of this choice, and please forgive me. It's graphic and might be seemingly unfeeling.. but considering not to many people choose the "no peg" route.. you should go with eyes wide open if you do choose this way.

I am a caregiver to my mom who was diagnosed Feb 2010 with Bulbar onset. My mom had been a "denier" and adamantly refused all interventions. Most adamantly, the PEG. She used to tell doctors that if they even mentioned the word she walk out of the office. She thought she could manage it by herself with swallowing techniques and food prep. But she was so picky about what she would eat and what she woudn't eat (ensure, supplements) she wasn't able to manage the weight loss.

She weighs 80 pounds now. She was a slow progresser and believe it or not, she was still independent (her choice) up until 2 weeks ago. She still can walk, she can still grip things with her hands but because of her weight loss she has no strength. She is mostly bedridden now, on hospice and considered 'late stage'. They have an iv drip that she chooses to use intermittently.. and other than that she uses little or no medications.

She suffers no physical pain. What she does suffer is this constant hungry feeling, chronic fatigue and frustration that goes along with it. She still tries to eat. I'm constantly making her food, that she tries to eat by sitting up and leaning far over her bowl. (Because aspiration is such a possibity she long adapted a technique of eating her food leaning over so it will go down the right tube.) It comes out just as much as in.. and because of all the mucus and saliva it spills out over her lap and on her chest. She often is covered in her food by the end of it. It's agony for her caregivers because we are constantly having to adjust and remake the food over and over because it's not hot enough, not smooth enough, too lumpy, to thin. This wouldn't be the case of course if she just adapted to ALS techniques and used thickeners, etc. She often looks like an animal because the food is all over her face and she's spitting it up. And for all that work, she gets very little substance down. It's a LOT of work for the caregivers and it is in vain because not only is she starving.. she's not getting any pleasure from the act of eating. She thinks about food constantly and watches cooking show. When family comes she makes us make giant feast meals that we have to spend all day cooking, and she just obsessively watches us when we have to eat in front of her. Its' torturous on all involved.

Now she is finally considering a PEG tube. All that moral stance is gone out the window because she's so tired of the process and wants to live. It is quesitonalbe whether or not she is strong enough to get thru the surgury. But I like to hope.

So my sum up:

Pros for starvation method.

-You get to control what you eat for longer and may feel more "normal" for longer.
- It becomes a race between Progression vs starvation. Which will win out? While they seem to go hand and hand, (weaker you get = faster you progress) you are controlling how you will pass.
- there is no pain. All this talk about dehydration and painful agony just isn't true. Hospice can supply IV fluids and pain meds if necessary. My mom hasn't needed any pain meds yet.
- you will die quicker, if that is your goal.

CONS for Starvation

-Managing food prep when the patient can no longer swallow is harder on everyone involved. Takes a ton of time, when a PEG feeding would take 10-20 minutes.
- The mucus buildup often prevents you from swallowing at the end and if you are dehydrated it's worse. This is the most uncomfortable part for my mom and there is so much build up, even with a cough assist she feels like she's going to choke all the time.
- If you try to continue to eat, you often feel degraded and like an animal.
- psychologically, its devastating on everyone involved.
- You will die quicker, and more likely your thoughts will be about food.

So i hope this wasn't too harsh, but because no one really talks about the starvation choice in terms of what it is actually like.. I really felt I needed to be blunt.
-mel
 
Follow up, again this is my scenario, as we all know progression is very personal both in speed and in what and where.

I was originally diagnosed with bulbar onset, originally I thought when the time comes I would get a peg if I had quality of life for me, but my onset begin attacking all parts of my body, seemenly pretty fast to me. 8 months since diagnosis and my right hand is failing, footdrop in both feet, am barely able to walk, (leg ,thigh weakness)still swallowing with slow concentrated effort, lung capacity has dropped app 10% in 2 months (55%). I am not asking for a pity party just explaining I am not taking away quality time (by my definition) by making this choice.

For me, repeat, for me, selfish me, believe I will be miserable once I have lost my independence, other than learning to spell better,(lol) I have always been a very physical person and think I will be miserable in what I see in my near future. If I live into that point I will accept it and make the best of it but I do not choose it, if that makes sense. I dont believe I will have trouble with the no food part. I have been days without water or liquid and severe diets for as long as a year. I can deal with that part of it.

If I had a diffrent scenario a diffrent answer would be possible, we all have to face the question, ourselves in our time. I have nothing but respect for anyone dealing with the beast, either caregiver or pal, no matter what the choices they make.
 
My mom has chosen no PEG. I think the PEG would be so much easier for her because the swallowing and weight loss is causing her so much anxiety. As her daughter, I want her to have it, but I agree with Michael that each person's choice should be respected and I try to keep that in mind.

Since she has chosen not to have the PEG, I asked for some suggestions a while back about high calorie drinks and got some good feedback. I also found something called Scandi Shake (600 calories when mixed with 8oz milk) and Benecal which is only a few ounces but has I think 350 calories and can be mixed into anything.
 
Status
Not open for further replies.
Back
Top