Hello all...haven't written much lately but I read the posts everyday. So much has happened in the last month. Our condo is being foreclosed on and I have moved to a small apt. Very stressful but I'm adjusting to the new place pretty well. I'll be signing the bankruptcy papers next week. What has really thrown me for a loop is the phone call from the NF about a feeding tube for John. He has been on a pureed and pudding thick diet for about a year. Because of work, I haven't spent much meal time with him but apparently he has been choking and coughing throughout his meals for about two weeks. The nurse and speech therapist feel it is no longer safe for John to continue eating.
I will talk to the medical director tomorrow and then make a decision. I would appreciate hearing from anyone with experience or knowledge about feeding tubes. Thanks cs
cs i am so sorry for all you are going thru. bad enough we have to lose our homes and change our lifestyle on top of losing our spouse. i am happy you are adjusting to the new apt. feeding tubes are a very hard subject. there are valid points to both sides. only you would know if your spouse would want this type of support to live now. i will be thinking of you during this time of decisions. they are never easy. divvi
I would evaluate this situation in conjunction with your DHs overall condition. This is a really really difficult decision.. At one point, my mom started with the choking episodes. She was doing the chipmonk..keeping food in her mouth until she started to cough and then choke. This went on a few times. So we had to keep an eye on her to make sure she didn't do that. Finally, as the disease took it's toll, she really didn't eat much other than ensure, or pudding or any other soft food. We used those little dental sponges on a stick to moisten her mouth and gave her fluid using a special syringe at the side of her cheek. We were lucky if we got 500cc of fluid in her a day. This is not enough to sustain life. The subject of feeding tube did arise and my dad, a retired surgeon, said no. In his view the risk of infection was too great not to mention the outcome would still be the same.
On the other hand, my aunt, who had a massive stroke, showed some signs of recovery and so she did have a feeding tube. She lived 6 more months but died not of complications with the feeding tube but from a follow on stroke.
Really no one can advise you which way to go with this decision. I think you have to listen to what the doctors have to say and weigh the risks of infection against against the benefits. If your DH is still able to enjoy some facets of life, maybe it would aid him if not, if he is hanging on I suppose the question to answer is how kind is it to put him through this, how stressful might it be for him..
I'll keep you in prayer as you face making this very serious and difficult choice. Hugs.
CS - I would suggest seeking counsel regarding your options down the road. If you chose to have the feeding tube inserted now, would you have the option later to have it removed if his decline left him in a state he would choose not to live in? I think this could be very sticky. There are a couple folks on this board who could weigh in on this.
Dear friends..thanks for the responses. John still has a "spark". He dosen't speak anymore but sings along to familar songs, grins ear to ear when I'm there and holds my hand all the time. No wheelchair, he walks with an aide everywhere he needs to go. Based on those things I don't feel it's time to give up. NF just called to tell me the Dr. okayed the order but I put it on hold until I can speak to him tomorrow. Thenneck...you're reading my mind. I need to know the legal ramifications down the road. I'll post tomorrow after speaking with the Dr. Thanks again. cs
CS you are facing a difficult decision many of us will have to make and it is truly a personal decision as there are no rights or wrongs depending on your DH husband's wishes...if they were made known. Did he talk about his end of life wishes with you? What stage is he in and is the end near? If it were my husband and if the disease had progressed to where the end was in sight, I would not want to prolong his agony by putting a feeding tube in, as feeding tube diets often cause diarrhea and can only prolong life for so long. Withholding the feeding tube will not cause any pain or discomfort. Research has documented that withholding fluids and food in dying patients gives them euphoria, a sense of well being. And as Theneck so correctly suggested, might it not be harder to remove it once you have started the feedings.
Good site were I got the below paragraph; http://www.dyingwell.org/prnh.htm
"These clinical reviews, case reports and new research data lend credence to the clinical impression that, among the terminally ill, the risks of uncorrected malnutrition and dehydration are few. (In this circumstance, death is not properly regarded as a risk, since it is a principal expected outcome.) Considered together, they allow us to state that, at least within the context of adequate palliative care, the refusal of food and fluids does not contribute to suffering among the terminally ill. The literature is consistent on two points: a) rarely does fasting cause any discomfort beyond occasional and transient hunger, and b) symptoms referable to dehydration are few -- mostly dry oral and pharyngeal mucous membranes -- and are readily relieved by simple measures."
Meet with the Medical Director with your questions written down. And as I always counsel friends, ask the director...if this were your Dad, Wife, loved one what would you do?
I am sure your decision will be right for you and your husband. Do not feel rushed into making a decision....especially with all the issues you are dealing with. Take care of yourself.
Again and again..we are forced to make these horrible decisions for our loved ones. I would say, if I were in your shoes, search your heart for what your DH would want. You know him best. One concern I would have though, is with the agitation he is experiencing, would he leave the tube alone? or would he try to pull that out?
While I have not had to make this decision, be comforted to know, you do not walk this path alone. We are all here to support you with loving arms.
Forgive my confusion on the agitation..I got it confused with another post. I do have great compassion for your financial situation. I am about 6 months behind you in that whole process, but I have decided to hold my head high and I enter financial ruin, as my husband will be getting the best care and I could care less what bridge I live under. I have not come this far to let him down over finances.
Thanks again to all of you for your support and sharing. Spoke to Dr. this afternoon and he assured me using the feeding tube or not using it would be my decision only and he would back my choice. As a family we are all of the same mind on this issue so I do not anticipate any problems but felt I needed to ask.
If I sign a wavier, I can bring John "comfort" foods from home. He loves pureed twinkies. They don't encourage this but I will try and see how it goes. If he chokes or shows signs of aspiration I just won't do it.
Dr. said this would normally be an outpatient proceedure but because of other issues John will be admitted 4 days prior and probably spend 3 days after in the hospital. I have requested Atavan if he becomes agitated and requested a sitter if necessary. Hospitalizations have not gone well over the past 2 years but I think my DH has gone to his happy place. Of course I will be there most of the time. The plan right now is to possible admit him on Fri. and do the proceedure on Mon. I'm more concerned about the effects of the hospital stay than I am the insertion but I know I'm doing the right thing...for now. xox cs
scs has made all the good points. It IS a very personal decision. My John was on "comfort care only" during his last two months. He did NOT suffer. His passing was like a whisper. No trauma. He didn't take in any food or liquids for several days before his passing. These were his wishes, that his inevitable demise should not be prolonged. I know it is hard. Love and understanding, Jen
I took the approach of having this discussion with my wife while she is of sound mind, as to what her wishes are and I video taped the discussion so that family, if and when they choose to get involve will hear it from her when the time comes to make those decision. It will still be difficult to follow her wishes, but I know what they are and have documentation to support it.
My wife watched her mother die at 59 of EOAD and spent most of her life in fear that she shared her fate. When she was still capable of discussing such things she told me in no uncertain terms that she did not want to be kept alive by any means at all when the end came. No IV, no feeding tube...