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Topic Feeding tube issues Go to previous topic Go to next topic Go to higher level

By deflo On 2009.07.28 09:20
Hi all,
I haven't posted in a long time but have been reading the threads. My husband was hopitalized last week with chest pain and short breathing. They did an angiogram and found a blockage that couldn't be stented. He has a history of heart disease, pacemaker, afib, other stents etc. The cardio recommended single bypass surgery and Maze surgery to control the afib. We did the surgery on Friday and he is recovering nicely. He is still lathargic from the anestesia and in and out of it. He has a nose feeding tube right now, but they are going to do a swallow study on him tomorrow and if he doesn't pass it they want to put in a stomach tube. I am torn on this since he has an advanced directive, in fact, I am now torturing my self for even letting them do the bypass on him. I am blaming myself for putting him through all this and now I have to make the hardest decision of my life. Of course the doctors are pushing for the feeding tube if he doesn't pass the test, I will also have to deal with my kids and his family on this issue. No matter what I decide I am doomed on this one. I want to do what he would want, but he is in no mental condition to make that decision. It's easy to say when you are healthy and making out an advanced directive that you don't want anything, but when faced with it, it's a whole different ball game. He's a fighter and I want to do what's right but I also know there is no "right" cholce here. Many of you have been where I am right now, any words of advice are soo welcome!Thanks

By Ilovemydog On 2009.07.28 10:36
When my mother suddenly became ill with cancer the doctor's pushed and pushed for a feeding tube. My mother would change her mind constantly about having it put in. Because of all the drugs she did not know what she was doing.
My sister is the POA and never, ever looked at my parents living will. My sis had the tube installed only later to find out that my mother did not want it.
My father had PD and I will make sure that a feeding tube DOES not go into him. He doesn't want it, he made his will and knew exactly what he stated in said will.

Good luck

By deflo On 2009.07.28 14:10
Thanks for sharing your experience, I am hoping I don't have to make the decision but it helps to hear what others have done in the same circumstance.

By bandido1 On 2009.07.28 16:14
deflo my medical history parallels that of your patient. I provided an advanced directive several years ago and have recently restated a position on feeding tubes. If your husband is still able to communicate with you intelligently I would recommend being direct in transferring the decision to him. Have him blink his eyes, once for yes to the feeding tube and twice as a "no". Our prayers are with you and your husband. Bob C

By WitsEnd On 2009.07.28 16:47
I went through the feeding tube discussion. First, the feeding tube nutrients do not provide full nutrition. That's whether it is a nose feeding tube or the one they insert surgically. The doctor didn't tell me that.....hospice did. The patient who can't go back to eating still ultimately starves to death--just slower. Some doctors are gung ho about feeding tubes--they treat the disease--not the person.

Don't be intimidated by the doctors. Ask for second opinions or other options. Do what you need to do to get comfortable. In the end it is you who will have to live with whatever decisions you make--not the doctors.

You and your family have a decision to make. On one side of the line is prolonging life. On the other side is letting go. Nobody can make the decision for you as to which side of the line you should stand on.

Sometimes the best kind of love is the kind that let's go. It's hard to do especially after fighting so hard...and it's not the "natural" thing to do. It takes work and courage.

I will praying for you.

P.S. The "right" choice is whatever choice you make that you know in your heart you did the best you could do on out of love.

By annwood On 2009.07.28 20:32
It is a difficult decision - I had to make it for my husband. You can read my old threads on this. My husband was a physician, I am a nurse. We both had advance directives stating no feeding tube - we had seen pleanty of them in our professions. My husband developed PD dementia in year 16 of the diagnosis. He had a swallowing test which showed that he was aspirating food & liquids. The physicians put a great deal of pressure on me when I refused the feeding tube. My brother is a hospital attorney and he told me to tell the physicians that I wanted the case reviewed by the hospital ethetics committee - when I told them that they dropped the pressure. As with many PD dementia pts my husband would have unexplained periods of lucidity. He was "with it" on one visit by the physician in his hospital room. I asked him if he wanted a feeding tube and he said "absolutely not". Case closed. I brought him home and he lived for 5 more months. I will always believe that I did the right thing. Do not expect everyone to be in agreement - it just doesn't work that way. You are his spouse and you have to make the decision regarding how you think he would want. Good luck. I am thinking of you.

By lynn On 2009.07.28 20:56
Instead of thinking about the tube for this immediate situation think back to what your husband wanted. Let this guide you.

By rajenriver On 2009.07.29 17:29
We had no directive from my FIL outside of the fact that we knew he wanted to be full code. After he lost the ability to swallow he was diagnosed with aspiration pneumonia. They were unable to do a feeding tube through his nose. Tried about 4 times, even using an ultrasound to try to guide it. He was in support of doing this. About a week into the pneumonia, we had the PEG put in because without it, he could not get the medications he needed for his psychosis. There were no IV formulations. He was starting to see scary things in his mind so we had to do something.

He survived for a little less than a week after we put it in because the pneumonia was not getting better with the antibiotics. For us, it was the right decision because they could give him the meds he needed to help with the hallucinations.

It was not an easy decision, but even today, we feel we did the right thing. Had he survived the pneumonia, don't know how we would feel today.

By deflo On 2009.07.30 11:05
Thanks for all your advice, you are right about the doctors putting pressure on you to put one in, he had the swallow test yesterday and passed with flying colors, thank God, so I didn't have to make that decision. He is now up and about and flirting with the nurses. Everyone at the hospital is amazed at the diffence in him in 24 hours. He's a tough old guy and not willing to let go yet. If I am ever faced with this again, I will not allow them to put one in. I've read all your advice and listened to what friends faced with this have gone through and it's not the way to go.
Thanks again to all

By susger8 On 2009.07.30 11:26
I haven't faced this yet with my father, but he and I have discussed it and he told me he wouldn't want a tube. I know when the time comes, there will be a lot of pressure. I try to keep in mind something that annwood said here -- if you ask the doctor if he would want a tube for him/herself, the doctor will say no.

By WitsEnd On 2009.07.30 16:27
Someone made a good point earlier though. I agreed to a nose feeding tube temporarily because of dad's hallucinations and mental state and they couldn't get the PD meds in him. The doctor said if we got those in him that he would be more comfortable and so I reluctantly agreed. (With the dementia he pulled it out...they put it back.) After a few days he did get better and the tube was removed.

The second go round when he stopped eating he didn't have the combative mental stuff going on so it was an easy decision to NOT do the tube. Also, having tried it before and it really only lasting a matter of weeks, it was easier to accept letting go. It's difficult though anytime when a doctor is telling you that you ought to do it.

For me, it was the difference between temporary and permanent. They suggested a PEG the first time and I said absolutely not. That's permanent. What I agreed to the first time around was for comfort and was temporary....but again only the person making the decision has to live with it so you have to do what you feel best with. Nobody can make that decision for you when the time comes, if it does.

By annwood On 2009.07.30 19:59
Hospice taught me to give my husband's meds rectally. They use empty capsules and you place the meds inside of it and insert them rectally. The absorbtion is ok this way.

By deflo On 2009.07.31 04:35
Wow annwood, that's good advice to have about giving the meds rectally. That's one of the reasons the docs were pressuring me to have the tube put in place, that and how he would starve to death and what torture that would be, etc, etc. They really lay a guilt trip on you. Right now my husband is recuperating very nicely, but I know the disease is still there and last night it was evident when he started accusing me of abandoning him and going on with my life while he is stuck in the hospital. There are no good decisions with this disease, I even question why I let them do the surgery in the first place. It might have been kinder to just let his heart take him out.

By Mary On 2009.10.16 14:57
I looked up this old post on feeding tubes because my father has become very malnourished. I believe he has damaged his body permanently. Dad has expressed in the past not wanting a feeding tube. Dad is also dehydrated. I wonder how long he can live eating a bite or two of food every day. He is now living in a Veterans Home and I can only see him once a week due to the distance. Each week he looks so much thinner than the last. He said their food isn't good. They have to puree it for him and he says that tastes even worse. I think he makes up excuses not to eat because he doesn't even like chocolate or ice cream any more. My only consolation is that he doesn't seem to be in pain. His clothes look like he could walk right out of them. I can't begin to imagine how hard this disease has been on Dad. It has taken so much from him including his independence and dignity. Watching Dad struggle with the disease is the worst experience of my life. A big thank you to this forum for your support, past and present, Mary

By LOHENGR1N On 2009.10.16 17:00
Mary, Your post spoke to Me, maybe because I just read Punky's post. Sometimes We all can be blinded by what We see. We tend to look at things and compare them to the past or to how We think or react to situations. I may be overstepping bounds now or putting my nose where it doesn't belong. If so just tell me I'm full of it! (It's ok I can handle that! I've been told such before and probably will in the future.) Sometimes someone not so closely attached to a situation can view it a bit differently.

I'm sure watching your Dad struggle with Parkinson's has been terrorizing. Your Dad foresaw that things might go this way and expressed His not wanting feeding tubes. Independence and dignity. (You're not going to do that to my body or force me to eat) You say Your only consolation is He doesn't seem in pain. Mary, your Dad still has dignity (of not having tubes and machines attached to Him that he doesn't want, of choosing to eat or not.) He has the independence to meet this phase of Parkinson's as much on His terms as anyone can and meet it with dignity. There's not much I can do or say about this situation you find yourself in now. I can only say from a patients view feeding tubes either yea or nay to have the choice is independence, to eat or not independence. To face this stage the way We want, dignity. Parkinson's Disease may take a lot from family, friends, loved ones and Us, but dignity and independence must be given and as I see it Your Dad still has His. In this You can still take comfort. Maybe in my crude attempt to help make sense of this for you, when you see your Dad you'll will think of this view and understand your Dads decisions a little more. I don't know, I hope this is of some help. Take care, best of luck and hang in there.

By deflo On 2009.10.17 10:05
I have been mia for the past 10 weeks, I've been dealing with rehab, home health, therapists, nurses, doctor visists, etc, This disease has taken me hostage and my life revolves around it, but I will not be defined by it, nor will I let my husband be defined by it. He recovery has been nothing short of a miracle, he has an amazing abilitly to heal and as far as his heart is concerned, he's terrific, now if they could only tune up his brain the way they tuned up his heart, we'd been much better. Thanks to the dedication of a super speech therapist he passed his swallow study!! He's off pudding thick and can now eat and drink anything he wants! Hooray for that, however, I had a heart to heart with the speech therapist about feeding tubes. She said they are only good if the patient will benefit from them and there is a chance of getting off, in my husband's case, she would have advocated for a tube if he had needed it, thank God we didn't have to make that decision. She is totally against them in the end stages of any disease, not just PD. She also said that it deprives a person of their dignity and only prolongs the inevitable. They are a burden on the patient and the caregivers and can deplete you emotionally because you only end up second guessing yourself as to whether you made the right decision or not. Each case has to be evaluated individually, it's a very personal and heart wrenching decision, and believe me, what you say you would do and what you actually end up doing can be very different. We can say no way to tubes, or pull the plug or no extreme measures till we are blue in the face, but until you are faced with that decision, you don't know how you will react. My husband is doing remarkably well considering he is 80 and just went through a really tough time. But he has PD, it will get worse and I hope when the time comes I will have the courage to make the right choice.

By Mary On 2009.10.19 10:58
Al and deflo, thank you so much for your responses. I agree, deflo, that it is hard to know what you'd really do in these situations until you are in those shoes. However, after reading Al's post, I feel confident that it gives Dad his dignity and independence to make this choices not to be full of tubes and being full of tubes actually takes away the indepence and dignity I so want Dad to have in all of this. So, Al, thank you so much for shedding your spin on things and please never feel like you are overstepping. You are a valuable source to me and nothing you ever shared with me or this forum would ever offend. I want to know and be educated and be prepared as best I can be for Dad's sake and mine.

Al, is it difficult for you when us caregivers vent because of feelings of being overwhelmed or frustrated, etc.?

Hugs and blessings to all, Mary

By LOHENGR1N On 2009.10.19 19:32
Mary, You asked; "Al, is it difficult for you when us caregivers vent because of feelings of being overwhelmed or frustrated, etc.?" In all honesty at times Yes. However the vents, overwhelmed or frustrated feelings are necessary and need to be aired (posted). When I read about the problem, I may have My own knee jerk reaction, then I look at it and try to bring both sides together. A middle ground to make sense of what's going on. Without the vents I wouldn't be able to speak from our (patients) view of a problem or conception of a problem. I don't to claim to speak for all Parkinson's patients but I can give a general view of what's happening and might be the cause of miscommunication or misconception. I've been battling P.D. for a long time and seen many come and go. A lot of times a new poster will post and it's something that's been asked and answered many times, but that's ok because it's new to them and important they find an answer. I've been blessed with the ability to break down a lot of the medical terms and talk to layman understanding and will continue to try till this disease is able to stop Me. Thank You for asking Mary, I think that's the first time anyone's ever asked that of Me. Thanks for the concern again. No worries here, I've got broad shoulders plus as a perk of Parkinson's, they're rounded now so if things get too heavy they'll slid off! Just keep posting. Take care, best of luck and hang in there.

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