Hi,

So we got a phone call today to have a meeting with the Dr to talk about wether or not to go down the path of a feeding tube. Poppa is 74 years of age, living in a nursing home and has been on vitamised and very thickened fluids for the last 3 years.

am asking for any experiences on having to decide for you're loved one wether or not to go ahead with a feeding tube.

thank you



Edited 1 time(s). Last edit at 03/13/2013 09:17PM by lipacis89.

This is an issue where I have never seen such strong opinions on either side. My daughter is 30 yrs old and has had HD for about 14 years. She is still very much "with it." She uses her computer all day long, watches movies, and really enjoys her life. She is able to walk well enough that we go out about every day. She can not, however, swallow any solid foods. She lives on ensure, boost, yogurt, and ice cream. She lived at Laurel Lake Nursing Home for 5 1/2 years and, quite frankly, was not well cared for near the end of her stay. She lost about 50 pounds during her last six months there. Since coming home to live last April she has regained 10 pounds and despite not being able to eat solid foods has maintained her weight. We looked at putting in a feeding tube in Jan. Today is the day it was actually schedule to be put in. Some people were strongly for it and some were strongly against it. My daughter wanted it. In the end we cancelled it because her home care nurse scared her to death telling her she would be kept up all night tethered to a machine. We have since learned that this is not true. It has been rescheduled for May. I think that the decision comes down to the patients quality of life. In my daughter's case, she is more alert than the average person circulating our earth, loves her life, and wants to stay as healthy as she can for as long as she can. I think the feeding tube is appropriate. If the patient has to have somebody else make the decision, perhaps it is not a good idea. I am really tired of hearing everybody's perhaps well intentioned opinions on this. A tube does not stop somebody from eating if they still can and is actually not a real invasive procedure. It is ultimately the patient's decision!!!



Edited 1 time(s). Last edit at 03/14/2013 12:13PM by howard.

I'm with you, Howard. If your daughter needs the feeding tube and wants the feeding tube then that's that. No one else's opinion matters a hill of beans and they should not be giving it unsolicited.

Thank you Howard....

yes it is up to the patient but in our case our Poppa can no longer make this decision so it has come down to us.

thank you again for telling me part of your daughters story, its much appreciated.

Howard, your story is always inspiring. Your daughter is so fortunate to have you as an advocate.

Whether to put a feeding tube in is a very personal decision. If we are ever faced with that decision, I would seriously consider what quality of life are we preserving at the time. In Howard's daughter's case, as in my husband's, yes HD limits their ability to get out and hold a job, or do some things they would like to if they did not have HD, but they are still enjoying every day their activities with familie and passtimes. I would seriously consider whether or not to place a tube in my husband for the end of life stage. He has always expressed that he does not want to live bedbound and unable to participate in activities. That decision is still down the road for us, but if his ability to swallow and maintain his weight were lost tomorrow, and everything else stayed the same, I would encourage a feeding tube.

I hope you can make your decision with peace of mind.
Patty

I have strong opinions on feeding tubes. I do believe that in Howard's daughter's case, a feeding tube is the right decision. She is able to actively participate in life. If someone can make the decision themselves is key, in my opinion.

When my Dad was in end stage and was hospitalized because his pulse and oxygen were too low, he had to have a pacemaker put in. This did not help him in any way. There was one doctor who was encouraging putting a feeding tube in. He said, and I quote, "it's no big deal". He was even pushy about it. This upset me greatly because my Dad would not have benefited other than nutrition. It was obvious to us his body was shutting down. As hard as it was to say the words, we told the doctor we did not want a feeding tube for him. Dad was transferred to the Hospice house and died just a few days later. Would a feeding tube have prolonged his life? Probably. Would there have been any quality of life for Dad? I highly doubt it.

I have HD as well. I'm early stage with just cognitive issues so far, a little balance issues. If I was mid-stage and needed a feeding tube for nutrition, I might consider it if I was still lucid enough to make the decision. If I am end stage, or even nearing it, I do not want a feeding tube. I think it would be extremely hard for my family to say "it's time to take it out" and I could possibly live for years with no quality of life.

The bottom line is...
If I am unable to make the decision on my own, then it's a No.
If I require 24 hour care, then it's a No.
If I require care beyond family during the day, it's a No.

Best wishes, it's an extremely difficult time and decision.

Patty