Lessons Learned From Donna’s Illness and Death

Yes. Every time I walk down the path of serious illness and death of a family member, I learn lessons.  Lessons that apply directly the next time I have a similar situation.  This is what I learned from Donna’s last days.

1. If there is a medical concern that is not being adequately addressed (in my opinion), I need to speak up.  Donna had restless legs syndrome and previous to her heart attack, had taken medication for that condition.  She used it regularly, and it worked well for her.  When she had her heart attack, the doctor took her off that medication.  He was concerned that her restless legs medication might exacerbate some of the mental and physical confusion she was exhibiting.  Because we did not believe that to be the case, Donna and Darla both asked the doctor to allow her to have the medication.  He refused them both.  Since they did not receive positive results from their requests, I did not follow-up with a request of my own. Looking back on this, I wish now that I had respectfully and forthrightly approached the doctor. Who knows? Perhaps I would have been able to help the doctor understand our concerns and place Donna back on the medication, thereby make her much more comfortable.  If he refused me as well, then I would know that at least I tried.  At least I tried. At least I tried.

2. You never know what or when a person’s last words will be.  So to the best of your ability, pay attention to every moment.  Stay engaged in the conversation when your family member feels like talking.  When it’s over, it’s over.

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Four Days in Hospice

Donna’s last four days were peaceful.  The nurses were very careful about keeping her comfortable by turning her in bed every two hours. Her pain level was very controlled with medication, and she was non responsive the entire time. Well almost. There was one moment gave us all a good chuckle.  A close family friend was sitting with Donna while I  stepped out for a little while.  When I came back, she told me that Donna had given her quite a scare.

It seems that Donna, who hadn’t spoken or moved on her own for three days, suddenly turned her head, opened her eyes, and tried to sit up in bed, Then she laid back down, closed her eyes, and turned her head back to the same position it was in previously.  Yes, our friend was very startled.  She frantically called for the nurse, who told her that it was just some involuntary movement and nothing more.

In the midst of the the humor we found in this incident we also realized with sadness that Donna was not coming back.  The emotional roller coaster continued.

The purpose of a  hospice in-patient unit is not merely to provide care and comfort to terminal patients in their last days.  It is also a calm, quiet place for families to gather and say good by.  Often there is also relationship “work” to be done in addition to letting go of a loved one.  Sometimes forgiveness needs to be asked for, and sometimes forgiveness needs to be extended to the dying family member.  On her last day, Donna and I had some of both to do.

It was a very emotional moment for me, but it gave me more peace about her death and more peace about my relationship with her. The issues Donna and I had are over. done. gone.

That evening, just after I dozed off to sleep, the nurses came in to check on her and woke me up to let me know that Donna had stepped into heaven. Her battle was over.

Wayne’s Battle with Pancreatic Cancer is Over

We are never happy with this kind of ending to valiant battles waged against any terminal illness. Our church prayed for Wayne.  We prayed first that initial diagnosis would be something other than cancer. It wasn’t.  We prayed that God would miraculously heal Wayne. We thought at first that He did, but He didn’t.  We prayed that the chemo and radiation would work.  We thought at first that it did, but it didn’t.  Finally, we prayed that God would be merciful and keep Wayne comfortable.  He did, and He took Wayne home just a few days ago, leaving a huge hole in our hearts, and our church.

We don’t understand why it has to be that way.  As our pastor said, we just know that God is still a loving God, and he cares for us in so many ways.  We were all blessed as we watched Wayne’s courage in the midst of his fear and pain.  We saw him share his faith in miraculous ways to people that he would not normally have even known.

Yes, we are sad and we miss him tremendously, but we know that for him, life is so much better.  Because now he is standing tall and whole, because his pain is erased, because we know Wayne has seen His face, we would never want him to leave heaven.  No, not at all.

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.

Updates on Wayne

It has been a while since I shared with you any news about Wayne.  As you may remember from previous posts, he is my Sunday School teacher and deacon in our church.  He was diagnosed with pancreatic cancer several months ago and has been undergoing chemotherapy and radiation treatments since then.

His radiation treatments are completed as are his first round of chemotherapy.   He is currently taking his second round which began about three ago.  He seems to be feeling better and is even gaining back some of the weight he had lost.  Low white cell and platelet counts are a problem and have delayed some of his treatments.

He hasn’t had any new scans since this round of chemo has begun so we don’t know what the cancer is doing, but we are praying that it is shrinking and that Wayne will be restored to health.

He continues to teach Sunday School, sing in the church choir and is even helping to build the new addition to our church.  We are so grateful that he feels well enough to do those things

Wayne and his wife, Glynn, are such an inspiration and blessing to each of us.  We pray for God’s hand to continue to be on them, comforting, strengthening, guiding, and protecting them as they travel down this very difficult path.

When Your Child Has Cancer

 I know what it feels like to grieve when your parents are terminally ill.  I have not experienced (thankfully) and do not know what it feels like when you have a child that is terminally ill.

In our church we have a couple who lost a grandchild to cancer.  He was about 13, I believe, when he passed away. Another couple in our church has an adult daughter who has an agressive cancer and is only expected to live perhaps another year, maybe two. Another family in our community has a daughter who is a young adult, and she is gravely ill with cancer.

My husband I were discussing these families and others who have children with cancer.  I suddenly had questions.  Is the emotional anguish different when you have a child who is terminally ill rather than a parent or even a spouse?  Is it different if the child is young as opposed to an adult child?  How does a parent feel when they realize there is nothing that can be done and their child is not going to live?  I can imagine feelings, anger, helplessness, denial, but I am sure there is much more.

Readers, I would like input from you on this subject.  If you have experienced the grief that comes from losing a child, or if you have a child or grandchild who it terminally ill,  please comment and share with us, how you felt, and how you process through your grief.  Share with us words of wisdom and encouragement, because there may be a hurting parent who would be touched by them.