Our Family’s First Experience with the Feeding Tube Decision

Being in his late 50’s he was considered young for the disease. My father-in-law, Olius began to show the symptoms of Alzheimer’s about a year before our son was born. I don’t ever remember him saying our son’s name. Instead he called our son, ‘old chap.’ It was very sad.

My thoughts and feelings about that time in my life is for another post. For now let’s just suffice it so say that I was in my late 20’s and my view of life is considerably different that it is now.

After several years of having this disease, his ability to talk, walk, eat, and recognize anyone was gone. It all happened so gradually, about 10 years from the first appearance of the symptoms until death. In his case the progression of the disease was agonizingly slow. At that time there were no Alzheimer’s medications that would improve his quality of life.

Again leaving many of the details of the progression of his illness to another post, the day came when he was unable to eat or drink. My husband, Rick, and my mother-in-law, Mary, (Rick’s mother) were at the hospital with him when the decision was made to insert the feeding tube. I was not there. Rick told me that the doctor came and asked Mary whether or not they wanted to put in the feeding tube and she said yes. That was it. No questions, not discussion, no debate.

Olius then existed with a feeding tube for approximately a year and a half. He could not sit up. He could not walk. He could not talk. Even though he would open his eyes, he could not focus on your face or give any sign that he recognized anyone. He could give no sign that he understood anything that was being said to him. In my opinion the feeding tube allowed him to just exist. Not live.

I do not believe that he would have wanted it this way. However, because he was never told that he had Alzheimer’s, he had no opportunity to express his wishes to anyone. It was not talked about. Period. Mary lived in denial until she could deny it no longer. By then it was too late for him to let us know his wishes.

His feeding tube was never removed. It stayed until his body, no longer able to function, shut down.

My feelings than and now are that the feeding tube was not helpful. It was hurtful. It was not kind. It was cruel. The feeding tube extended the dying process his body was in for well past a year. Even though he was given excellent care, he had no quality of life. Again, it was very sad.

There were several things that could have and should have been done as a family. First of all, the denial was helpful to no one, least of all Olius. The disease should have been recognized, admitted, and openly discussed. Our efforts in this regard were rebuffed by Mary. It was frustrating to all of us, but it was most of all not fair to Olius.

Additionaly, as a part of the dicsussion there should have been questions asked by health care professionals about the disease, its progression and what decisions were going to need to be made before the end came. Again, because of Mary’s denial, no questions were asked. Basically the family was ‘flying blind’ through this ordeal.

Also, when it was time decide about whether or not to insert a feeding tube, there should have been questions asked, discussion and even debate. Would Olius have wanted this? I think not.

In all fairness, Rick and his brother did the best they could in a difficult situation. They were young men at the time and their father, also young, was dying. It was hard. Would they do things differently now? Of course. But at this point, what do you do? Nothing can be changed, so you just go forward with your life applying the lessons you learned to future experiences. They have done that.

For families facing this most difficult of decisions, whether or not to insert a feeding tube into a precious loved one to sustain their life, please, please talk about it. Ask questions. Ask your doctor questions. Ask each other questions. Discuss. Debate. Do not make a decision one way or another without thinking about all the effects your decision will have on your ill family member and the rest of the family as well.

In my next post, I will discuss our decision to put a feeding tube in Mother.

Feeding Tube Discussion

This post is a response to a comment I received a few days ago. The comment was made on my post titled “Time to Say Good By to Mother” https://deborahfoster.wordpress.com/time-to-say-goodby-to-mother/

The comment came in the form of a post on another blog or website.

http://news.technophobiac.com/2008/03/27/how-not-to-say-goodbye-to-a-loved-one/

This comment was very respectful of us as a family and very understanding of our sorrow and grief.  I appreciate that. I also understand the writer’s position on the debate of whether or not to remove a feeding tube from a terminal patient, and do not disagree with the statements made in the comment.  I must, however, make one statement in my defense at this point.  Rightly or wrongly,  I did not know, yes, even in this post Terri Shiavo era, the physical effects  dehydration would have on my mother’s body.  At the time of Mother’s death, April 15, 2005, Terri Shiavo’s case was still very much in the media, but somehow, I just don’t remember those details being stated.  At any rate, the truth is I did not know and was not told about what she would experience as her body with through the process of dying resulting from the denial of hydration and nutrition.

As a result of this comment, however, I have mentally revisited the days of agony in which we first made the decision to insert a feeding tube in Mother and then the day in which the decision was made to remove it.

I also realized that almost everyday there is someone who reads my posts about Mother’s feeding tube as a result of a internet search for information about this subject. Additionally, realistically speaking, almost every family will one day face the feeding tube dilemma, as they make life and death decisions for a precious loved one.

It is so hard.  I don’t have enough wisdom to give every family advice.  However, I plan to do some writing about what we learned from this experience and also another time in my life when my father-in-law, dying from Alzheimer’s Disease, existed for a year and a half because of a feeding tube.

There is no doubt that this discussion of feeding tubes will be very emotional for all of us who have had to face ‘the decision’.  Please feel free to share your thoughts and experiences.  I know there are families who are wrangling with this delimma even as I write this post.  It is my prayer that my words, our discussion, perhaps even debate, will be helpful to you and your family.