Posted By: ShadowCG Hail Mary Pass - 02-06-2013 05:16 PM
In the summer of 2011, my wife Becky had surgery for cancer on the back of her tongue. After the surgery she had very limited swallowing ability, but it was improving, and her speech was of course impaired. Radiation and Chemo therapy in Oct 2011 took away what little remained of her swallowing ability. She receives all her nutrition through a tube in her stomach. By March 2012 Becky finally convinced the Dr to take action to help with her swallowing. May 2012 was to be her first dilatation, but the Dr found that Becky's esophagus was closed tighter than originally thought and they would have to try again to go down the throat while also going up from her stomach. That procedure took place July 2012. In December 2012, the third dilatation was performed and she is finally beginning to take small amounts of liquid and pureed food by mouth, and by small amounts I mean in the tablespoons per day range. It has taken her so long to get to this point, and with the tube feedings giving her problems with nausea and digestion irritation, Becky has decided to stop taking any nutrition, and only take water, by tube. She pushes each day to increase her intake by mouth, but the struggle with swallowing is really draining her. This sink or swim decision has me a bit scared, but I comprehend her wanting the torture to end, whether by death or improvement. Since she has a DNR, and I will abide by it, when the time comes, if that is the outcome, who should be contacted, and should there be some prearrangement with them?
Posted By: Maria Re: Hail Mary Pass - 02-06-2013 11:44 PM
Hi, Shadow
You are in a very difficult situation, and I'm not sure which aspect to think about first. Do her doctors know about this?
Maria
Posted By: ChristineB Re: Hail Mary Pass - 02-07-2013 12:42 AM
First, welcome to OCF!

This situation must be very difficult for not just your wife but also you as her caregiver. I think being a caregiver is a very hard task. You must carry all the weight of the household on your shoulders plus be the patients advocate thru the ups and downs all while keeping a smile on your face. Not easy at all!!!

Im going to ask you a delicate question, Im sorry if its upsetting. I do not mean any harm or disrespect at all. Does your wife wish to die? Without nutrition, her body will eventually fail her and shut down. I imagine starvation is not an easy death. But thats what will happen if she doesnt get nutrition. I understand living on a feeding tube isnt easy (I use one too for about half of my nutrition). Many people can live good productive lives even if they use a feeding tube or have speech, hearing or other physical limitations.

Would a therapist or psychologist be able to help? It sounds like your wife may be depressed. Surviving oral cancer and living with its after effects can be hard to handle. Maybe it would help her to join a group of other like herself. OCF may be a resource to allow her a place to vent and make friends. She could see she is not alone in her struggles. Maybe have a long talk with your wife and let her know you need her. Everyone needs to be needed, they need a reason to get up in the morning, a purpose in life. Could you help her by making her feel useful in some way? Possibly she doesnt see her own worth and could use some guidance.

We are here not just for the patient, we can also help you as her caregiver. Im sorry but I dont know of any agencies that you could contact besides hospice when she gets towards the end.

Wishing you both all the very best with everything.

Posted By: Brian Hill Re: Hail Mary Pass - 02-07-2013 02:02 AM
I have many friends I have made here that are on permanent PEG tubes. Their dysphagia and aspiration is bad enough where it is the only solution. One is employed full time as a code warrior/programmer, others are retired and traveling, one is Charm a regular here on the forum. The commonality in them all is that they have accepted that this is the nature of their future. For sure there are things missed, and there are compromises to live with. But all feel lucky to still be around, and all are leading happy lives with their significant others.

Said with great respect for others who have every right to choose their own path and live (or quit) in their own way and time, I don't understand her mindset. The path that she is on will end poorly as she is not going to get enough nutrition to stay healthy, or worse. I think that given this extreme choice, (again not desiring to offend) that she might be served well discussing this with professionals that deal with people with handicaps as a matter of routine.

For sure this is a handicap, and you can weigh that against people who have lost limbs, are wheelchair bound, are blind or whatever. I think that as long as your have your mind, your friends and family, you have a reason to find a way to endure and continue. I definitely think that there is still the opportunity to be a significant contributor to life and others. Counseling and intervention might realign the patient's perspective, if you could convince them to delve into that kind of interaction.

About 50 million Americans live with disabilities, 50% of them severe impairments. I like EricS's favorite saying, "He who has a "why" to live can bear with almost any "how"." -Nietzche
Posted By: klo Re: Hail Mary Pass - 02-07-2013 08:04 AM
Hi Shadow

Maybe a counsellor associated with a hospice or just the hospice for advice on how to handle the future?

I personally have no issue if she is choosing this way to die, but she (and you) needs to be very clear that there is a big risk that this is what she is doing.

I guess what I am trying to say is that your wife needs to understand the consequences of not eating, and everyone around her needs to be sure the decision is an informed one and not driven by depression or some other chemical imbalance, that might be clouding her judgement.

Clearly as her life partner and carer, you are already aware that you don't get to make the decision for her, and it is your job to support her in whatever she needs to do, but you DO get a vote at least. Are you okay with what she is doing? Are you confident she is making a considered decision and is fully aware of the consequences?

I am very sorry you are both going through this, it is something I dread myself - either making such a decision or supporting someone who has.

Posted By: Charm2017 Re: Hail Mary Pass - 02-07-2013 03:19 PM
Shadow
I do not know the full story of your wife ,only what you shared. Obviously I am very biased here if the only reasons your wife plans on suicide (make no bones about it by euphemisms like death with dignity, etc) are her speech impediments and a lifetime on a feeding tube. But even I supported some poster's suicide decisions when they were had no spouse or loved one in their daily life,or very lonely, they were past eighty and had no compelling reason to live. Your wife does not seem to fit that,
Instead my opinion is that the medical community has failed her spectactuarily in not informing her of basic ways to deal with what in reality are not as bad as they appear. Bear in mind that from your description both my speech and eating issues are far more severe than hers yet as Brian posted,,I have a good life despite them so I think my opinion is based on fact and proven by experience
First, she should have an AMT mini one low profile feeding tube or "button" put in to replace her undoubtedly horrific Mickey tube. The difference is life changing.
Second, she needs to buy a Vitamix blender and then she can eat most of the food you do and even have meals together again
Third, she needs to see a prothodontist to get an oral appliance that will greatly improve her speech
Fourth, she should be seeing a speech language therapist
Please try and convince her to use the lousy feeding tube and canned formulae inthe interim. Death is forever so it is not unreasonable to ask for 90days more to. Get all 4 things done.
Ironically, I am typing this advice from a hospital bed after complications from my third round of cancer. I had base of tongue cancer and surgery plus three different rounds of both radiation and chemo so trust me, I know very well just how difficult this can be and of course I have been depressed and felt like giving up. It is normal. But it is fair as a caregiver to ask for three months of trying to ameliorate these issues
My doctors are here and I. Have to go for now. Later today I will send links on each om 4 points. Don't give up on her or let her give up on herself without at least trying 4 simple steps
Charm
Posted By: Anne-Marie Re: Hail Mary Pass - 02-07-2013 05:25 PM
Shadow - I sure do hope that you and Becky will at least give yourselves a chance to put into practice the suggestions above before considering giving up on what could be a very meaningful life. You may not be able to see the light at the end of this dark tunnel you are in right now, but the light is there. You've been given hope by some of the very best we have on this forum. Hope is good. Embrace it!
Posted By: PaulB Re: Hail Mary Pass - 02-07-2013 09:13 PM
I think everyone has such thoughts when times are tough, and Charm summed everything up nicely. I had a DNR, and did worse, when I was in the hospital for several months, paraylized, lost 110lbs in a few weeks, with no sign of recovery or hope, as a result of my first treatment, which thankfully was not needed. Actually, the hospital tied me to the bed for my own protection for a few days one time. Today, you would not even know what I went through unless I told you. Your wife made improvements, Medicine and technology is improving, and there is always hope, and ways to work around any disabilities, which may only be temporary. Maybe your wife needs professional help as a suggestion. Good luck with everything.
Posted By: ShadowCG Re: Hail Mary Pass - 02-13-2013 07:28 PM
To try and fill in some of the blanks so folks aren't doing it on their own:

My wife does not want to die. She is not contemplating suicide.
She is getting nutrition. Since my original post her intake by mouth has increased dramatically, but, is still short of ideal.

As to Charm's four items:
1. Her tube issues have nothing to do with the type, brand, style of g-tube, or the fact that she may be on one for a long time. All the formulas make her ill (ie: nausea, vomiting, diarrhea, etc.). This is a placement issue and there isn't an alternative location because this is the alternative location (Best location destroyed the first time).
2. We have blenders and food processors and she is taking by mouth what I eat, and we have meals together.
3. & 4. Her speech impediment is not caused by her teeth or jaw and she is seeing a speech therapist.

Right now the Dr's are not going to put her on hospice. They probably won't until it is too little too late. I know there is a good chance she will not reach her nutritional goal, and want to be prepared.


Posted By: Maria Re: Hail Mary Pass - 02-13-2013 09:33 PM
Hi, Shadow
I am really glad to hear the the nutrition by mouth is increasing - that is great news. Have the doctors considered Total Parenteral Nutrition (TPN) by IV to help her along as she increases her intake?
I am sure you are packing the food that is blenderized with as many nutriants and calories as you can. My husband does breakfast shakes with fruit, oatmeal, milk and whey powder - they are VERY tasty.
Maria
Posted By: Charm2017 Re: Hail Mary Pass - 02-13-2013 10:51 PM
Shadow

I apologize for jumping to the wrong conclusion since it sounded like you had both given up on getting adequate nutrition. I had recently posted a link to man who had chosen not using his PEG for anything but water as a suicide method. Thank you for filling in those details. A much better, fuller, yet infinitely sadder portrait of what you and your wife are going through.
Yet I can't help but hope there are counter measures and in fact know of some your team may not have offered such as parenteral infusion.

I found a lot of very similar issues and problems discussed on the Yahoo groups of Blenderized diets and and some list servs on tube feeders. You have more on your plate than researching them

tube placement: usually if the G tube area is destroyed, a J tube can be used. In the very worst case, when enteral feeding does not work, there is the option of permanent IV feeding. According to the Oley foundation site, people thrive for years and years on it.

Nausea / diarrhea/vomiting from formula : extremely common and some of these kids were near death until switched to a blenderized diet. It's just a question of blending the food you already say you do a little finer so it goes down the feeding tube. I personally notice a major difference between Jevity and the blenderized food. Why not just try putting your blended food down the feeding tube instead of the formula. It will be thinner than what you are drinking or else it won't go down.

My teeth and jaw are just fine, yet I have a major speech impediment due to surgery at the base of tongue, so I'm not sure what that means.
She may want to ask the speech therapist about VitalStim, an electrical stimulator that has helped many. didn't work for me, but worth a try.

I understand that not taking extreme measures such as parenteral infusion ( IV - no tubes - no stomach) feeding for life is not the same as suicide even if it means not meeting the nutritional goals needed to live . It's just the finality and fatalism that I am reading into your posts on this thread do not square with what I know has been done for others similarly situated.
Charm
Posted By: ChristineB Re: Hail Mary Pass - 02-13-2013 11:02 PM
Shadow, there are at least a hundred of different forumlas on the market. I was one who struggled with finding the right one and was very ill from several of the types I tried. Talk this over with her doc. Ask for a nutritionist to help. They may be able to give you a few cans of different kinds to try. Some formulas are milder and easier on the stomach than others.

Ive used a feeding tube for a very long time and picked up several tips to make the formula easier to tolerate. Maybe some of the following ideas will help your wife. Besides trying different formulas, the most common things which cause stomach discomfort when using a feeding tube are speed and consistency. What about using a feeding pump? If you dont already have one, ask the doc for a prescription for one. That could make a huge difference! You can program it to run slowly. Also adding water to the formula can make a huge difference. When doing a feeding, she should be sitting up or only slightly reclined, never laying down. If using a feeding pump, try to raise the head of the bed about 6" and have your wife sleep on at least 3 pillows so she is laying inclined.

Please suggest these tried and proven helpful tips. Never know until you try them. Its worth a shot!!!

Good luck!!!
Posted By: ShadowCG Re: Hail Mary Pass - 02-13-2013 11:39 PM
I failed to mention in my last post that I do appreciate the responses and information I received.

For this I apologize.

It gave me additionsl directions to go in my searches.

As to the blended foods, this is something we have been discussing, and I think the clogging issue may be part of the resistance, in addition to the uncertainty of will her digestive system react to it the same as the fake stuff. I will continue on this front.

All of the responses I get about the VitalStim from anyone that tried it has been like Charms 'it didn't work for me', but, it's still out there, so it must have some positive responses, and is still an option.

@Charm2017 what type of oral appliance were you referring to that she would get from a prothodontist?

Thank you for your feedback and future responses.
Posted By: Charm2017 Re: Hail Mary Pass - 02-14-2013 12:09 AM
Shadow

Since the tongue surgery, my tongue does not go high enough to completely touch the top part of my mouth, the palate.
So my prothdontist made me a "a palate drop". It fits snugly against my palate but having been made from a mold where I pushed my tongue up flush with it, when I put the palate drop in, now there is closure between the tongue and top of mouth.
It's not an obdurator or anything to do with my jaw or openings in my palate just the very limited motion of my tongue after being reconstructed with a free flap. The hope was that it would actually let me propel the food hard enough to swallow.
and it has worked for lots of his patients. But then none of them had radiation twice so they did not have as much damage to their swallowing muscles.
the palate drop does signficantly improve my intelligibility in that I can form the sounds clearer and louder.

I too was very very leary of clogging my tube or the difficulty of getting down regular food, so much so that I suffered through that dangling tube for almost two years because the doctors had convinced me that the tiny 12FR anti reflux valve in the "button" would clog, while the tube has no valve so it was 16FR
(FR is the measurement of the diameter of the tube, the larger the number the bigger the inside of the tube is)
Yet it has never clogged and I am talking full meals here;
for example tonight: chicken breasts, carrots, broccoli, onions, mushrooms, a cup of yogurt, chopped banana, someleft over soup, all thrown into the vitamix, at setting 10 for 2 minutes. Then I use a strainer just to be sure and pour it into a bowl and syringe it in. It would probably be better for your wife's stomach to use a gravity bag, just hold the strainer over the bag and fill it up. It took a little while for my wife to get the water ratio right - and you do have to add two cups of water. But nary a clog or problem.
I have never heard of anyone preferring forumla over a blenderized diet. I'm thinking of going full time but right now just doing dinner is easier.

Last, as Christine noted, the rate of the food or formula going down the tube matters a great deal. Many many of the blenderized diet people use only a pump at slow speeds. Even the gravity bag is too fast for them, let alone the bolus syringe. It took me a year to work up to the fastest way possible, filling the syringe and depressing the plunger to send it flying, rather than the "bolus".letting it drip down the syringe without using the plunger.

Check out the Oley foundation website or the blenderized diet groups if you need more convincing
Charm

Posted By: donfoo Re: Hail Mary Pass - 02-14-2013 03:29 AM
[quote]I have never heard of anyone preferring forumla over a blenderized diet. I'm thinking of going full time but right now just doing dinner is easier.[/quote]What is the rationale for that? It can't be taste so is it that regular food is better accepted and absorbed by the stomach? This is all down the road for me but will loom up soon enough so better to get ready sooner rather than later.
Posted By: EricS Re: Hail Mary Pass - 02-14-2013 07:13 AM
I live off of a blenderized diet myself as I can still swallow liquids and some soft foods, however solide foods are largely out of reach. I believe there will be a time when I'll have to switch to a PEG full time and to be honest I don't like the idea but at the same time if that's what i have to do then that's what will happen.

I'm not a fan of the formula's as I haven't found one with ingredients I approve of as I'm generally very mindful of what I put in my body. This is actually why I enjoy blending and have an unnatural obsession with my blender. If you are going to live that type of life, having the proper tools is key which is why I recommend a Vitamix. With my blender I'm able to get the same consistency as the formulas and I can control my macronutrient breakdowns and make sure I get all my vitamins, minerals, antioxidants, etc...

I make a game out of it myself as I've shown where I can control some of my hormone levels, hydration, etc by my intake. It keeps my mind off of how bad it sucks not to eat solids. I still cook for my family as I love to cook, and sometimes it's hard but you find ways to cope. One of the ways I found that helps is to have conversations with others that share similar issues...like my friends on these forums.

Anyway I hope you and your wife find solutions that work, keep your chin up.

Eric
Posted By: Charm2017 Re: Hail Mary Pass - 02-14-2013 03:29 PM
Don

I do not want to hijack Shadow's thread with the long explanation of my comment. Please see the link below for some info but I will be starting a new thread on real food / blenderized diet tomorrow that we can hash this out in detail.

Shadow
Here is a link that spells out a lot of info on the advantages of real food. Bear in mind that the majority of PEG users do just fine on formula since it is usually less than a year.
But just as your wife has experienced far more problems with the PEG (the first site destroyed?), it stands to reason that she may need a more aggressive solution.
BD pro & con

Charm
Posted By: PaulB Re: Hail Mary Pass - 02-14-2013 04:27 PM
I have a vitamix also, and as mentioned, will liquify basically anything. I have a vegetable juicer too, which makes thinner juice without the pulp. Although, when going through my recent treatments, I preferred the canned nutrition due to the convienance, but it was only temporary. I did require TPN through my port when I lost too much weight back in 2010, and was unable to eat.
Posted By: ShadowCG Re: Hail Mary Pass - 02-14-2013 04:58 PM
[quote=Charm2017]
So my prothdontist made me a "a palate drop". It fits snugly against my palate but having been made from a mold where I pushed my tongue up flush with it, when I put the palate drop in, now there is closure between the tongue and top of mouth.
[/quote]

I am definitely checking into this, and feel that the doctors have dropped the ball by not suggesting it. I was confused when you first mentioned it since my quick search brought up just info on dentures and bridges.

Thanks for setting me straight!!
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