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.

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The Latest on Captain Hook

I received these updates yesterday and today.  Within their words you can feel their peace with the seriousness of Don’s illness because of their trust in God and His care.  Don’s sense of humor is also evident when he writes.  His ability to laugh, joke and tease has made a huge difference in their outlook, I think.

March 28, update

“Well folks here we go with the last treatment(maybe).The Dr. told us yesterday that if my counts come back quick that he might give me one more treatment. We told him that was his call and not ours. We are just praying that GODS will will be done in this. All you cousin’s out there remember when I was a ornery and mean little boy, well you have to be meaner than a junk yard dog to go thru all this mess. I am asking all you out there to just pray that GOD’S will be done in this. To all our friends in good ole’ Big Spring Texas a big howdy from Houston Texas. Just sitting here waiting for them to get our room ready. I will let Jo Ann say a few words and don’t believe a word she says.

I will make this short and sweet because time is about to expire on this session. When it expires, you lose everything you have written.
I will update again after we get in a room.”

March 28, update

God is Good All The Time!!!! We were admitted into the hospital tonight at 8:15. They did blood work as soon as we got into the room so that they could check the platelet level. When the nurse got the blood report, she came in and told us that the platelet count was 59. She called our Dr. and he decided to give Don a platelet transfusion tonight and start the first chemo drug tomorrow morning. Our Dr. is on the Clinical Team this week and will be coming by to see us everyday. We are happy about that. Don is feeling good and ready to get the treatment started. We will get to sleep better tonight because the transfusion does not last as long as the chemo does.

We Praise God for His loving care through out this journey. Thank you all for your prayers. Please pray for smooth sailing through this treatment.

God bless you all, Captain and Mate

March 29, update

The good Lord has given us another beautiful day. The ship has docked and the Captain is picking on the nurses. We were able to rest last night. The Dr. came by this morning and told us that he had decided to start the treatment today. The first drug is called Retuxin. It takes six to seven to complete. Don has tolerated the drug well in the past. We have walked this morning and now we are waiting for the nurse to start the drug. As we were walking, we walked around the Children’s section. They are so precious and truly remind us of God’s angels. It allows us to see other’s problems and realize how blessed we are to be where we are in this journey. God has given us today and our prayer is that we might allow others to see Him in our walk.

Thank you and God bless each of you for your prayers. Remember to keep your light on – you never know when you will meet someone going through a storm.

Love, Captain and Mate

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.

Captain Hook Update

This update came from the CarePages of MD Anderson Hospital.

“Hello to our faithful Prayer Warriors: The Captain’s advisor told him today that he could drop anchor tomorrow. We will be admitted into the hospital for the fourth treatment. We had a blood draw and met with our Dr. for the results and a discussion about the Pet scan that we took before we went home. The Pet scan did not show any active cancer. We Praise our Heavenly Father for answered prayer with humbled hearts. The platelet count was 56 and the Dr. thought that it would be high enough by tomorrow to start the treatment. He also said that we may have one or two more treatments depending on how Don responds to the chemo and how quickly his platelet count comes up. We have put this journey in the loving hands of our Father and we trust that he knows best.

We will be able to update each day we are in the hospital. We want to say THANK YOU for each warrior that lifted us up through out this journey. We ask God to bless each of you ten fold.

God bless until tomorrow, Captain and Mate”

Update on Don (Captain Hook)

This is an update which comes through the CarePages from MD Anderson Hospital. Don and Jo Ann returned to Houston yesterday. Their updates are always fun and uplifting. Don is also known as Captain Hook and Jo Ann is the First Mate.

“AHOY to all of our faithful prayer warriors!!!! We were blessed with sixteen days at home and it was wonderful. We are so blessed with a wonderful family, a praying church family and pastor, and friends that have lifted us up to the Heavenly Father. THANK YOU!!! I thought that the ole Captain would be nicer after the break, but I was wrong. He is still a mess – I will just ask for an extra cup of GRACE each day.

We came to the Clinic as soon as we arrived in Houston. We had blood work done and than waited for the report. The report showed the platelet count was up to 48. THANK GOD!!! The nurse made an appointment for Thursday to have blood work done and scheduled admission into the hospital, if the platelets are high enough.

God bless you all,

CAPTAIN HOOK AND FIRST MATE”

“Miracle On I-20, Refinery Explosion” Pictures

I wish I knew who to give credit to for this power point, but it came to me via email from a friend. If there is someone out there in cyberland who knows the source of this presentation, please let me know. These pictures shows the power and intensity of the fire and the destruction of the explosion. There is much progress being made in the repair and rebuilding of the refinery, but there is oh, so much still to do. Once again, God’s presence was evident to all of us in Big Spring, Texas that day.

miracle-on-i-20-refinery-explosion.pps

Don, Jo Ann, and Non Hodgkins Lymphoma

Don and Jo Ann are precious dear friends.  They are members of my Sunday School Class, and have been examples of strength, courage, and faith as they once again journey down the cancer path.

Several years ago, I remember that JoAnn had breast cancer.  It was found early.  She had a lumpectomy and was treated with medication to prevent its return.  Her cancer has been in remission since then.  In fact, she may be classified as cured.

Don and Jo Ann watched a grandson, Sage, fight and lose his battle with rhabdomyosarcoma, a fast growing cancer in children.  At the age of 12, Sage was told, after enduring cancer treatment, that nothing more could be done.  During his remaining two or three weeks of life, Sage showed strength, faith, and grace that could only have come from God.   Yes, Sage may have lost his battle with cancer, but he was victorious in the way he faced death, inspiring everyone who knew him.

Don has battled Non Hodgkins Lymphoma three times.  This form of cancer is treatable, but not curable.  Don has been a patient at MD Anderson Hospital in Houston, and the two of them have made countless trips there.

Lymphoma first appeared in 1997,  in a testicle. It was small, the size of a BB. In 2003 it returned in the form of a volleyball sized mass around Don’s right kidney.  After four chemo treatments, this cancer when into remission.  Don was placed in a stem cell transplant clinical study.  His blood was enriched with neuprogin injections and then his own stem cells were harvested.  After another procedure in which they ‘burned him out’, he was reinjected with his own stem cells.

Don’s remission this time lasted only 3 1/2 years, and returned in Nov, 2007,  in his lower abdomen.   Once again the cancer has been put in remission by chemo treatments, and there is a possibility that he could have another stem cell treatment.  This time, however, the cells would come from Don’s brother who is a perfect match.  Don may decide to wait on the stem cell treatment, because hopefully this cancer treatment will keep the lymphoma in remission for a long time, and there is always a danger of rejection with stem cells even from a perfect match.

Don has one more chemo treatment to take which is basically an ‘insurance’ treatment, just in case the scans missed some malignant cells.

The challenge for Don with this recurrance is that his body is not recovering from the chemo treatments as quickly as it once did.  His blood counts and platelet counts have been very low, and they have been very slow to come up.  Normal platelet counts are from 140,000 to 440,000.  Don’s counts have been as low as 4,000.  He has had a total of 29 transfusions of blood and platelets since Dec, 2007.  In fact, his last treatment is being delayed due to low platelet counts.

It is so amazing to watch the faith and courage they both display to all of us. Even when blood tests don’t come back with the news they hoped for and prayed for, they know that God has all things in His hands, and they rest in His Peace and Comfort.  Oh, yes.  They have had a wonderful sense of humor about all of this also.  I know that has helped.

Please pray for Don.  Pray that his current state of remission will last, that his cancer will not return.  Pray that his blood counts and platelet counts will come up so that he can have his last chemo treatment.

Pray for Jo Ann. She is truly an amazing person and I consider it an honor to know her.  I know that she has times of exhaustion, frustration, and fear, but she is so very in tune with God that His Strength and His Grace meets her needs day by day.  Those of you who have been caregivers know what she needs and you know how to pray for her.  Please do so.